I'm not sick anymore!?

I'm not sick anymore!?

Perhaps like many other American families, my family’s most steadfast Thanksgiving tradition is to go around the table before we eat and invite each person to share something they’re thankful for. My mom this year shared, with teary eyes, how thankful she was that I’m feeling better. It was a sweet moment because my mom has invested A LOT in my healing – she was the one who researched my symptoms and pushed me to get a Lyme diagnosis – and it feels like all our collective hard work is paying off. It was also sweet for me because, before my mom shared her gratitude, I wasn’t really present to just how much my energy had shifted. Healing had snuck up on me. 

I've historically found holidays difficult. The travel, socializing, and food traditions all presented their own set of challenges. I made them work, with lots of rest and support requests, but they still always felt like a big energy investment that I’d pay for afterward. Even with recent positive shifts in my healing, I was anticipating some challenges with year’s festivities, as I mention in this Huffington Post piece about how spoonies prep for the holidays,

My recent refrain has been that I’m not quite 100%, but feeling better than I have since high school. That has been true but just in the last couple weeks, I’ve been feeling so good that I’m not sure I can fairly call myself a sick person anymore.

What produced this miracle? I’ve gotten a big boost in the last six months from getting Ondamed treatments and doing a lot of intuitive work (solo and with support) but it’s the Dynamic Neural Retraining System (DNRS) that really took things to another level. I started the program on the 11th, just an hour after chatting with the writer of the Huff Post piece. This past week, starting on the 20th, I went on a serious bender. I didn’t do any drugs or alcohol but I did a BUNCH of things that would have previously landed me on my back, potentially for a couple days. I drank coffee. I stayed up ‘til midnight two days in a row. I ate everything that people brought to my partner’s birthday potluck, including a slice of cake with buttercream frosting (made with a bunch of foods that usually make me sick), I did more than half the driving on two 10 hour car rides, I went for a hike, I won a game of Scrabble, and won a game of darts. And not only did I do all those things, but I didn’t worry much about the consequences.

I have to give a little credit to the tiny amounts of caffeine I had, as well as activated charcoal capsules, which seem to keep me from having my usual reaction to gluten. But, for the most part, I credit DNRS. I have also noticed a profound change in my sound sensitivity. I was able to listen to loud music in the car yesterday and today without feeling like someone was poking sharp sticks in my ears. In fact, it felt pleasant.

If you haven’t heard of DNRS, look that sucker up. It’s a drug-free treatment program that can completely reverse symptoms of multiple chemical sensitivities (MCS), chronic pain, fibromyalgia, Lyme disease, ME/CFS, anxiety, depression, POTS, and PTSD. DNRS creator Annie Hopper suffered from severe MCS and discovered that these illnesses are a result of limbic system impairment and that, through repetitive neuroplasticity exercises, they can be healed.

As a refresher, the limbic system in the brain deals with motivation, emotions, and arousal and it includes the amygdala, which regulates our fight or flight response. It is closely integrated with the immune, endocrine, and autonomic nervous systems. A limbic system impairment, caused by trauma (chemical, emotional, physical, or otherwise), can cause our bodies to perceive threats everywhere in the form of pain, anxiety, food allergies, and more, even when we’re perfectly safe, and it can last for decades. Hopper says the impairment is simply a cross wiring in the limbic system and by practicing the DNRS exercises an hour a day for six months, you can rewire your brain and feel TOTALLY NORMAL.  

If you’ve been living with treacherous symptoms for years, or most of your life, that sounds way too good to be true.

I have a couple buddies who started the program a couple months ago and even though they were raving about the results, I was resistant, for two reasons. First, I didn’t want to add yet another thing to my long daily self-care routine. Second, I felt like I might need to feel all the feels and dig deeper into my emotional baggage to heal fully. In reference to the first worry, doing DNRS has allowed me to cut things out of my routine. I no longer feel the need to do daily coffee enemas and while I still want to meditate and do yoga every morning, I don’t feel like I have to do 40 minutes of it to have a pain-free day anymore. That’s nice because I feel freed up to do other kinds of exercise. The DNRS training rounds can be split up into two 30-minute chunks and they’re mood-boosting, so it really doesn’t feel like a chore. Regarding the emotional work, DNRS has helped me see clearly just how many negative emotions and behaviors I was still holding on to. It has been good to be aware of them and a relief to see that I can train myself out of them.  I probably could have had the same breakthrough on my own but it would have taken a lot longer for me to get there.

If you want to learn more about DNRS and hear from someone who’s a couple months into the program, I’ll be on Facebook Live this Friday at 1pm EST interviewing my buddy Eli about his experience. After just a couple months of DNRS, he went from living in a tent in his mom’s backyard because of crippling mold and chemical sensitivities to getting on a plane and enjoying a trip to New York City. You can get the link to join us and sign up to get a reminder when we go live on Facebook here.

Perpetuating the Illusion of Having Your Shit Together

Perpetuating the Illusion of Having Your Shit Together

Today you have permission to be authentic. 

Something that has come up a lot recently in my coaching sessions is the pressure to show up as "doing great" when that's far from the truth- because of relationship difficulties, challenges at work, health issues, a recent loss, or something else. One of my clients described this as pressure to stay poised even when she was feeling REALLY sick.  This isn't good for us because it doesn't allow us to feel all the feels we need to feel AND we actually expend more energy. We spend energy feeling the thing and MORE energy suppressing it/lying about how we're doing. Acting in this way also perpetuates this totally false assumption that some people somewhere always have their shit together, always feel good, and are always successfully cruising through life without the support of anyone else. 

Let's be real, no one has their shit together all the time. In fact, most people are struggling with at least one thing most of the time. 

So why do we spend so much energy trying to stay poised and uphold the illusion of being fine and having our shit together? 

We usually try to stay poised out of fear – fear that we'll push others away or fear that they won't be able to handle our truth, especially if it's something that's been true for a long time (like years of being in pain).  It's true that they might not be able to handle it, but that's not about you. They just may not have the tools to handle their own discomfort. And when you withhold what's true for you, you're actually doing a disservice to yourself and others. You're robbing yourself of the opportunity to be seen and loved fully, and you're robbing others of the opportunity to support you, love you, and be connected with you. 

That pressure we put on ourselves to show up as having it together is upholding a capitalist construct that hurts everyone. Our capitalist society thrives because of a binary that certain things are the norm, i.e. wellness, happiness, financial success, productivity, independence, and that other things are not normal, like sickness, depression, financial struggles, and needing support from others. We know in our hearts that all humans struggle with these supposedly not normal things, but we still hold ourselves up to that norm sometimes. And it that can feel reeeeeaaaaallly shittty. 

With everything that's going on in our country and the world right now, it's more important than ever for us to be connected and build connection wherever we can. We're all struggling with something, so let's be in community with that and support each other through it instead of suffering alone.  When we are real with someone, we give them the gift of being real too, and we both get the opportunity to connect. 

The holidays are approaching which can mean a lot of time with family, seeing people at holiday parties, and a lot of the "how are you?" question. I want you to invite you to seize that as an opportunity to experiment with being courageous and truthful about what's going on for you. If things are difficult at work right now, it can be as simple as saying, "you know, things are difficult at work right now." You might find that the person you're talking to says, "Yeah. Same here."  Boom! That takes way less energy than saying things are great!

Let's call bullshit on that binary and give ourselves a real shot at true connection.  

Note: I want to give a shout out to Johanna Hedva who's essay "Sick Woman Theory" influenced this piece. 

Discovering the Value of Embodiment and Play

Discovering the Value of Embodiment and Play

This weekend I got to attend a symposium for rising practitioners organized by Mobius Executive Leadership in Newton, Mass. It was so cool just to be in a room with other young coaches for two days, and especially coaches who approach the work in pretty different ways. Everyone there was equally committed to facilitating social change, on an individual and global level, and doing it in the most playful way possible. It was a refreshing reminder that personal development doesn't have to be "work." 

I most appreciated the emphasis on physical movement and connecting from a centered place that seemed to be a guiding principle throughout the weekend. Nearly everything we did either started with a movement exercise and/or taking a moment to get grounded and turn inward. On the second day, for example, we started the day with some contact improv, which was followed by a song, meditation, and a visualization exercise. Then we had short dance parties between each afternoon session. It felt so good!

I often feel way too tied to my computer, too static, and it was such a treat to move and use my body as much, or maybe even more than, my brain. That helped me see that I want to organize my life around movement instead of the other way around. I am also going to do more in-person sessions with clients so we can walk, move, dance, etc. as it feels right. One of the symposium’s organizers, Yotam Schachter, shared with me that this embodied approach to coaching and facilitation is growing in popularity and will soon be as hip as mindfulness has been in recent years. If that’s what the future of this work looks like, full of movement, play, and centering, I’m super into it.

“Embodied coaching” is defined here as “concerned with posture, movement, breathing, intention, and awareness.” It also considers emotions to have geography in the body, which psychologists and trauma specialists have understood for a long time and which has led to the rise of somatic practices in counseling, psychology, and elsewhere, I have not seen this as much in the coaching space.

There are several embodied coaching approaches though, and I’m excited to see them used more widely, especially in corporate settings. I personally look forward to integrating somatics and ontology in a deeper way in my work. It just makes sense. In ontological coaching, we are always encouraging observation. That generally means observation of thoughts and the quality of your energy, but why not also foster greater body awareness at the same time? 

I had the opportunity to be on the receiving end of a very somatic experience with Ishita Sharma of Come to Center this weekend. Ishita is emphatic about not being a coach, so I won’t call it a coaching session, but the session, whatever it was, was both the most playful and profound I have experienced with any healer or coach. 

At one point I was talking about the sadness I was experiencing and Ishita encouraged me to fully experience it in my body, through all five senses. I won’t go into all the details but I ended up feeling and resolving some pretty significant physical pain, I cried, I sang, I did wheel pose, I lied on the ground in savansa, and I got a kiss on the cheek at the end, which I opted into. I also saw so clearly something that I’d been missing in my quest to really love myself, which was fully embracing my pain, physical and emotional, and expressing gratitude for it. It’s so obvious to me now that part of the reason I’ve been struggling in the last couple months is that I wasn’t embracing my wholeness. I was fighting and questioning parts of myself instead of inviting them in and loving them. We can’t compartmentalize ourselves and expect to heal. We can only heal fully and we do that by loving and fully experiencing all of ourselves – the good, the bad, and the painful. I know this, and I tell others all the time, but I haven’t been doing it for myself. And even though I've been writing and sharing gratitudes daily for a couple years, I haven't once expressed gratitude for the physical pain that's been most present and persistent. Seeing that was a huge breakthrough for me.

I’d already started playing with a more embodied approach to coaching before this weekend and now I’m super pumped to integrate what I learned and bring even more body awareness and play into my practice. If you’re interested in being my guinea pig, send me a note and we’ll set something up. :)

Unrest: A Must-See Film

Unrest: A Must-See Film

I got to see Unrest last night, the new documentary about Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) by Jennifer Brea. At the time she got sick, Brea, a journalist, was too ill to write about her experience so she began filming herself. The film is her story of trying to get medical help and learning about the illness through conversations with doctors and other longtime patients.

I was reminded while watching it on the big screen at Coolidge Corner Theatre that just being able to attend the screening was a privilege. Most of the people Brea interviews in the film haven’t been able to get up and go to a movie theatre for over a decade. They are too sick to get out of bed. One featured patient hasn’t spoken in a year.  Even folks with ME who aren’t bed-bound are much too sensitive to sound, light, and scents to be in a movie theatre. I learned about the film from a friend who is bed-bound with ME, Lyme and severe mold sensitivity. She is so sick that something like trying to go to a movie theatre could be fatal for her. Still, she’s a huge activist and ME advocate and hands down one the strongest spoonie I know. It felt important to see the film, and bring people to see it, to honor her and the hard work of so many people like her.

I also felt called to see the film because I knew it would speak to my experience, specifically the often untold but infuriating story of living with a debilitating illness that is largely ignored by the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) and poorly understood by the medical field in general. ME is not a rare illness yet it gets a teeny tiny fraction of research funding. The same is true for Lyme. In both communities, suicide is very prevalent but because there’s so little money for research, we don’t have the data to show how widespread it really is.

Here’s what we do know about research funding:

  • Parkinson’s, which affects about one million Americans, garnered $169 million in the NIH Fiscal Year 2018 research budget.
  • HIV affects 1.1 million Americans and got an estimated $2,471 million in the same budget.
  • Lyme got $22 million. Because the NIH and CDC do not recognize chronic Lyme, we don’t know how many people are living with it. We know that somewhere between 300,000 - 500,000 people get it every year.
  • We don’t really know how many Americans are living with ME because it’s so poorly diagnosed but I’ve read numbers from 800,000 to 2.5 million. The estimated research funding for ME in FY2018 was only $6 million.

It’s important for everyone to understand just how many people are left behind by modern medicine and to know specifically which illnesses aren’t getting any attention so we can build the political will to change the status quo.

I took my partner and two friends to the screening and I’m asking all my friends and family members to see it. It’s also just an excellent film. It has 100% on Rotten Tomatoes so far so I’m not the only one who thinks so.

I often walk away from justice-oriented documentary screenings with a feeling of despair because I feel more educated about a problem that I feel mostly or totally helpless to do anything about. In stark contrast to that, I left Unrest feeling super pumped. It was so unbelievably empowering to see my struggles and the struggles of my community on the big screen. I was pleased by how Brea portrayed her difficult journey to getting a diagnosis. Just like me and so many of my friends and clients, her pleas for help with her mysterious and incredibly debilitating symptoms (i.e. not being able to walk) were initially dismissed by doctors as stress-related. She was getting her PhD at the time and her doctor explained her symptoms by saying she was probably too stressed about her exams. I was told the same thing again and again in my journey. One of my more painful memories is one of trying to explain to a rheumatologist that I couldn’t do my hair anymore because I couldn’t hold my arms up long enough to blow dry or even brush it. (This is why I have short hair today.) Her response? “Yeah. That stuff’s exhausting. I hate how much energy it takes to look nice too.” WTF LADY!?!? I’m trying to tell you I can’t hold my arms above my head. Brea shares in the film that it wasn’t until she showed one of her doctors a video of her in a moment when she was unable to move that he finally took her seriously. More doctors need to understand this aspect of the patient experience.

Unrest also shows, in a very inspiring way, just how much people with even very severe chronic illness can accomplish. Brea made the film from her bed, conducting interviews on skype with patients and doctors all over the world. The most common theme in all the reviews I’ve seen and heard about the film so far is how incredible it is that Jennifer was able to create it all while being so sick. It is incredible. And people like us do incredible things against seemingly impossible odds every day. People with chronic illness raise families, run businesses, make beautiful and poignant art, and get legislation passed. This isn’t common knowledge because for the most part these people are invisible, knocked out of society by the illness. There are also thousands of people who are able to function but because their illness is invisible, you would never know that they’re in excruciating pain every day, or pushing through severe fatigue. Part of my mission as a coach is to support more of these invisible people to be open about their experience, for the sake of their healing and as a public service, so everyone is more aware of how widespread these illnesses are.

Unrest highlights the invisibility problem and how it disproportionately affects women. It specifically calls out the long history of gender discrimination in medicine, going back as far as the Ancient Greeks, and shows so clearly how little we’ve evolved on this front. Thankfully the film is fueling a recent uptick in public discourse about gender bias in medical research and treatment. I appreciated this recent piece on the Harvard Health Blog and am eagerly awaiting Maya Dusenberry’s book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick set to come out next Spring.

Finally, Brea gets mad points for her clear call to action after the film. Like the great organizer that she is, Jennifer joined us by Skype for a Q&A session after the screening and told people how they could plugin to help spread the message of the film. Her advocacy organization #MEAction is running a campaign to get the film shown in doctors’ offices, hospitals, medical schools, and in front of elected leaders to further educate people on ME/CFS and the broader issues in medicine that put ME/CFS patients at a particular disadvantage. A clipboard was passed around to capture the emails of interested parties. Nearly everyone in my row signed up to stay informed. Unrest is going to light a fire and I can’t wait to see where it goes.

Definitely, see the film and invite everyone you know so we can begin to turn the tide on this immense and unnecessary suffering. Click here to find a showing near you or find it on iTunes. 


 

We Need More Than Medicine

We Need More Than Medicine

About a year ago I called the leader of a Lyme support group to ask if her group would be interested in a mindfulness workshop. I offered to teach the participants tools for stress relief and pain relief so they might experience a little more ease in their long battles with Lyme. The organizer said, “you can come if you want but these people don’t need mindfulness, they need antibiotics.”

Another person recently emailed to say she was hesitant to share one of my workshops on bringing ease to decision-making and strengthening intuition with their autoimmune buddies. Their friends, they said, were focused on healing autoimmune disease and even if I saw a connection between that and strengthening intuition, she didn’t think they’d make the leap.

There’s two things that irk me about these kinds of interactions:

  1. Both of these individuals were making decisions on behalf of people with chronic illness. They weren’t letting them have any agency in the decision. I’ve seen this a lot and it feels pretty disempowering to be on the other end of it, to see other people project their assumptions on to you and completely leave you out of the decision-making process. People assume they know what we need or don’t need. They assume we won’t be able to help them with something because we’re wrapped up in our own crisis. They assume we are too sick to hang out. They assume we won’t be interested in a certain kind of treatment and they don’t ask us. They don’t give us the opportunity to say “no.” I would always rather be asked and have to say “no.” While saying “no” can be painful, it’s not nearly as painful as learning that you were never asked because of someone else’s incorrect assumption.

  2. When someone reacts this way to an offering, it highlights a big misunderstanding in what it really takes to heal fully. Even though healers like Louise Hay (RIP!), Dr. Andrew Weil, Deepak Chopra and others have been in the mainstream media for years talking about self-healing and the mind-body connection, it seems the majority of people have to get knocked over the head with a horrendous health crisis before they get it. And even then, many are still resistant to the idea that they have to do more than follow doctors’ orders. If antibiotics alone actually healed people from late-stage Lyme, we wouldn’t so people who’ve been sick for 10, 20, 30 years. If medicine healed people, we wouldn’t have chronic illness! It takes more than medicine to heal. The mind/body/spirit connection is real. Because of Jon Kabat-Zinn and others, we have the science to prove that mindfulness can change our gene expression.

So, if even science has proven the power of the mind/body connection, why are so many people still so worried about finding the right doctor, the right medicine, the cure?

Practitioners, how can we make this message more powerful?

Spoonies, how can we reclaim our agency when illness and pain have incapacitated us in the eyes of others?

 

I plan to write more about all of this but I’d love to hear from you!

Think Less, Get Better Results

Think Less, Get Better Results

All of us are born with a strong intuition. If you’ve spent much time with kids, you know this to be true. They’re crazy intuitive. Unfortunately, our public education system emphasizing thinking over feeling so most of us aren’t ever given space to foster our intuition. Over time we lose it and mistrust it. Then, when we graduate from school and start facing big decisions and challenges, we try to use our critical thinking skills to think our way to the answer, rather than taking the time to ask ourselves, “what do we truly want?” And that’s not to say that critical thinking isn’t helpful, but it’s only one of the tools at your disposal. Trying to go through life with critical thinking as your only tool for uncertainty is like trying to make a gourmet meal with only a paring knife. In certain circumstances, it’s infuriating. If you’re trying to slice a watermelon, for example, having a chef’s knife makes the whole experience way easier and more fun. And your intuition is like that chef’s knife. It needs to be sharp to be useful. We need to practice using our intuition, both to sharpen it and so we begin to trust it.

Another way to think about intuition is the unconscious mind. (In this case, I’m lumping subconscious into the unconscious.) While it’s not totally clear, many scientists agree that 95-98% of our decisions every day are made in the unconscious mind. We probably only spend 2-5% of every day making conscious decisions. So if the unconscious mind is what’s really running the show for us, does it really make sense for us to leave the conscious mind in charge of important decisions? Probably not but the conscious mind is sneaky. We don’t realize how much it’s doing for us. We don’t really notice it, appreciate it, or tap into it very often. Like strangers with candy, we’re not quick to trust it.

I used to never trust my intuition and I still don’t sometimes. I see myself doing something, like carrying too many things, and I think, “that’s not a good idea,” and then I do it anyway and spill rice all over the floor. That’s a small example but humans do this in bigger ways all the time: we take jobs that deep down we know we won’t like, we make out with people when we intuitively know they’re not a good fit. And when it doesn’t work out we usually make up some story that places the blame elsewhere. Conversely, when we make a choice to do something from our intuition and get great results, we call it luck.

About six months ago another life coach named Elizabeth Granfort, who describes herself and as deeply intuitive, told me that the right side of your body is your masculine side and is concerned with critical thinking, while your left side is your feminine and more intuitive side. This set off a light bulb for me. Going back to 2004, all of my chronic pain has been on the right side of my body. No doctor, herbalist, chiropractor, or body worker has been able to explain why it was so one-sided. It occurred to me while talking to Elizabeth that my pain could be the result of years of ignoring my intuition and I decided to start playing with it. I began to regularly ask myself questions, starting small. At the grocery store, I’d put my hand on a certain bag of chips or piece of fruit and ask myself silently, will my body like this? I have a lot of food sensitivities and my body is changing all the time so eating the right things can be tricky. Interestingly, I always got a clear “yes” or “no” when I asked. When I ignored my intuition and ate things that got a clear “no” on, because I was stubborn and wanted to eat vegan sugar-free ice cream no matter the consequences, I got a stomach ache every time. When I lost my car key at the grocery store recently and couldn’t find it anywhere in the store or the parking lot, I asked myself, “where is my key?” I got a clear “in the car.” I didn’t believe that because when I shined a flashlight in the car I couldn’t see a key anywhere. I also mistakenly thought that my fairly new car was smart enough to prevent me from locking myself out. Two hours later, when I got in with a spare, I found my key wedged between the seat and the center console, just out of sight.

These are just small things I’ve been playing with but learning to ask and trust your intuition can be useful on a much broader and deeper level. It can help you make big decisions with more ease and confidence, perform better at work, and certainly improve your game in sports.

In “The Inner Game of Tennis,” author Timothy Gallwey writes about how the best tennis is played from the unconscious mind. He divides the self into two parts, Self 1 and Self 2. Self 1 is the conscious, thinking mind and Self 2 is the unconscious, intuitive mind, where the natural talent lies. While training tennis players, Gallwey noticed that his students were way more successful when they were playing from Self 2. When he’d say, “hold your racket like this, and put your feet like this,” they started thinking about what to do and didn’t play as well. When he had them simply watch him hit 10 balls in a row and then asked them to imitate him, without instruction, their form drastically improved.

If you’d like an opportunity to get out of your conscious mind and start playing with your intuition, come to my workshop, Stop Second Guessing Yourself and Channel Your Inner Wisdom.  The workshop will give you both a chance to practice your intuition and tools and prompts so you can practice at home.

Pain Is the Medicine

Pain Is the Medicine

Last week I had the pleasure of attending a workshop at the Omega Institute in New York called “Ignite Your Intuitive Healer.” It was led by homeopath, spiritual healer, and author Katina Makris, and author and founder of the Gateless Writing method, Suzanne Kingsbury. Both women are Lyme survivors and both of them look at least 10 years younger than they are. So we can assume they’re doing something right.

My fellow workshop participants were Lyme and chronic pain survivors, as well as some folks who were grieving great losses. Everyone was a writer. Our mission for the week was to tap into the energy of each of our seven chakras and write about what came up, without judgment or any kind of editing.

Chakras are energy centers in the body that run from the crown of the head to the base of the spine. Each chakra is associated with particular organs and systems in the body, and has a metaphysical association. The root chakra, for example, is associated with the skeletal system, as well as security and balance. So someone who often worries about their own safety and well-being, even unconsciously, might be said to have root chakra issues.

chakras.jpeg

We meditated on each chakra, then were given writing prompts for each. Words just poured out of us. It didn’t feel cognitive at all like spirit was just moving through us onto the page. I was surprised by what came up for me. It often wasn’t what I would have expected given the prompts. That’s the magic of the Katina-Suzanne duo.

So there we were – nine strangers together in a room for a week, expected to share our deepest, darkest pain and desires. We were all super willing. I think chronic pain and grief will do that to you. You get used to being raw with people. Sharing was a really sweet experience and we actually laughed a lot more than we cried. We were not allowed to comment on the content of each other’s writing. We could say we liked it, that it touched us, or that is was powerful, but that’s about it. That explicit boundary created a very safe container in which we could release, transform, and connect deeply with each other. It was completely unlike my academic writing experience, which centered around criticism and feedback.

The beauty of the Omega Institute isn’t just the amazing facilitators it brings in, the beautiful grounds, the full scholarships they give out (!), and the local vegetarian fare they serve up at every meal. Both times I’ve been, I’ve appreciated the opportunity to connect with some of the other growth-oriented, spiritual seekers that it attracts.

During breakfast on the last day, a guy my age who’d attended a different workshop asked me if I wanted to dine with him and debrief our respective experiences. Umm, duh. I love a good debrief. His workshop was called “The Healing Power of Unconditional Presence” and he said one of his big learnings from the week of meditating was that, for him, pain is the medicine. Sitting with the painful things that came up for him, and exploring them instead of breathing them away, allowed him to move through them and come out lighter and stronger on the other side. I had a very similar experience in my workshop. Even though I’ve danced with my emotional pain before, I learned I still had some deep stuff lurking in my chakras.

My biggest breakthrough was acknowledging that I have experienced trauma. There’s a HUGE connection between trauma and Lyme (and Fibro and other conditions too). Katina and others talk about this, and I’ve historically puzzled over how I fit into that mold, given that I hadn’t had any significant trauma. Because I was lucky enough not to be repeatedly raped by a family member as a child, or experience something similarly vile, I was telling myself that I hadn’t experienced trauma.

Like many women, I am a victim of sexual assault. I have pretty much never talked about it because I told myself it wasn’t a big deal. I don’t know if any of my best friends even know about it, but my fourth chakra sure does.

The fourth chakra governs the heart, circulatory system, spleen, and immune system. It’s associated with love, compassion, jealousy, betrayal, and relationships, among other things. Our second writing prompt for the fourth chakra asked us to write about something we wished we could have said. An account of what I wanted to say to one of my assailants just poured out me. Literally, I didn’t even think for a beat between being given the prompt and starting to write. It was wild. Sharing it with the group was really, really hard, but also very cleansing and freeing.

After nearly six weeks of moving around, squatting in the homes of generous friends as a mold refugee, I showed up to the workshop super worn out, ungrounded and a little panicky. I left with a great lightness in my heart, and a lot of confidence that I will heal fully, run a thriving business,  and make friends in my new town, even if I don’t know how yet. It was a real treat to continue to strengthen my intuition, something I’ve put a lot of intention towards in the last six months. I’m excited to share some of my favorite intuition-building tools in a workshop I’m leading next week called, “Stop Second Guessing Yourself and Channel Your Inner Wisdom.” Check it out here.

Why Positive Thinking Won't Heal You

Why Positive Thinking Won't Heal You

Many of my clients, whether they’re living with a chronic illness or not, say to me at some point, “I just need to be positive” or “I just need to keep a positive attitude.” This isn't surprising since positive thinking shows up in the workplace, the military, and nearly every corner of our lives  The Mayo Clinic touts it as a strategy for reducing stress and improving health.

My reply to my clients is that positive thinking is for suckers. And to the Mayo Clinic, I’d ask “what about removing the sources of stress? Doesn’t that seem way more efficient?”

Sure, it’s probably better to look on the bright side than to be a negative nancy but those aren’t the only two options, even if popular opinion might say otherwise. There’s not a lot of room in our society for negative feelings around hard stuff like death, illness, and other forms of loss. And our societal discomfort with negativity causes real harm, particularly for people with anxiety, depression, or chronic illness because they rarely feel supported in feeling all the feels. More on that here.

Thinking positively is just not a good strategy for addressing your life’s biggest challenges and it can actually make your physical and mental health worse in two big ways:

  1. It’s an energy suck. To say that you need to think positively assumes that your feelings or experience are bad. So, to think positively, you’re expending energy thinking about how negative an experience is and then you’re spending more energy to engineer some alternate, more positive, and potentially false reality for yourself.

  2. If you’re telling yourself that your pain or suffering isn’t that bad when it’s actually really bad, you’re allowing whatever you’re experiencing to go untreated and worsen. If you’re not acknowledging your pain, you’re also not asking for the support you need to resolve the situation. And as I wrote in a post called “Why You Shouldn’t Ignore Your Pain,” the “I’ll just suck it up approach” doesn’t just hurt you but the people around you as well.

Here’s the thing, negative feelings are 100% normal and worth being acknowledged. Also, not everything is about feelings. That’s an important tenet of the ontological coaching I practice and part of the reason I love it so much. 

When I’m working with a client, I’m not concerned with how they’re feeling. I’m helping them first to just see what they’re telling themselves about a particular situation. The story could be positive, negative, or otherwise. It really doesn’t matter. What matters is whether or not that story is helping them get where they want to go. Often it’s not, and that’s why they feel stuck, worried, helpless, etc. If the client is willing to let go of the false, unhelpful story, it creates space for them to create a new one that is motivating, inspiring, and more true to who they really are. It’s pretty much the best!

So, the next time you have a negative emotion, be compassionate with yourself and know that it’s okay and totally normal. And if you hear yourself say, “I just need to think positively about this,” take a closer look at what “this” really is and what needs to be done about it. That might support you in moving forward. 

 

 

Building a Support Dream Team

Building a Support Dream Team

Modern folklore will have us believe that there are a lot of things we “should” be able to do on our own like start a business, heal from a complex illness, or get into the grad school of our dreams. But that’s about as real as a jackalope riding a unicorn.

In reality, no one, ever, in the history of the world, has achieved great things entirely on their own.

We all need support to achieve the things that are most important to us. And to be successful, we need to be willing to ask for that support. My favorite way to ensure success in any endeavor is to intentionally build a Support Dream Team. In the social entrepreneurship world, this is often called building your own board of directors. Same idea but if you want more than just advice like if you really just want someone to bring you soup once a week, that title might not make sense. Hence, Support Dream Team.

How to build your own support dream team:

1. Get clear on what kind of support you want and make a list. I advise everyone to write a vision statement for the life they’d love because once the vision is clear, you can look at it and ask yourself, “who do I need on my team to help me make this vision real?” If you don't have a written vision yet, read this, and write a short outline or paragraph of what you're trying to do. Then list out all the tasks/projects you are going to want support with.  If you’re writing a book this might look like, “copy editor, graphic designer, writing coach, an accountability buddy, chief cheerleader,” etc.

2. Begin filling in the team roster, i.e. Copy Editor: my friend Kaz, Chief Cheerleader: Barry.

3. Note any holes in the roster and brainstorm how you might find those people. If you don’t already know a graphic designer who can help you make a book cover and you’re not interested in doing it yourself, who could you ask for recommendations? Are you willing to post on social media and ask for recommendations?

4. Start asking! Start with the easy asks – the people who are likely to say yes. This will help build your confidence and allow you to practice explaining your vision before you try to enroll people you don’t know into supporting you. If asking for help feels really hard, get some support to ask for support. Ask a friend who’s good at lovingly kicking your ass, or hire a coach like me.  :) One of the single most valuable things I got out of coaching was overcoming my fear of asking for support.

If you’re asking friends and/or family for support, sometimes it can feel nice to make a declaration to the group as a whole, then follow up with people individually. This might look like an e-mail titled, “Be on my Dream Team?”  If there’s anything you need to communicate to a wide audience like “I’m not going to be able to hang out as much because I’m focused on building this business” you can do that at the same time. Members of the Spoonie Superstars Facebook group can check out a beautiful example here of an email someone wrote to all her girlfriends asking them to come hang out with her so she wouldn’t feel so isolated while she’s healing from Lyme disease. 

Notes on Networking

When you reach out to people you don’t know, or don’t know well, about being on your support team, try to be really clear with them about what you’re asking for. There’s this common assumption that you need to have tea or a meeting with someone to build a relationship. While that might seem like the polite thing to do, it could actually work against you if someone is really busy. So, before you email someone, or call them, or reach out to them on LinkedIn, get super clear yourself on what you’re asking for, whether it’s a recommendation for a person or organization, articles, resources, or some other aspect of their expertise. Definitely, do your research on the person before you reach out and demonstrate that you’ve done so, i.e. “I really appreciated your blog post on baby goat yoga.” This shows respect for their work and their time.

Assume that people want to support you and share your expertise with you. Wouldn’t you?

Follow up at least twice. Do you respond to every single email and message you get on all your social media platforms always, after the first message? If so, you get a sticker. Most of us don’t. If someone doesn’t respond to you, it doesn’t mean they were offended by your message or don’t like you. It could mean that, but it could also mean that your message is drowning in their crowded inbox, or that they’re on vacation, or just had a baby. Definitely, follow up.

My First Dream Team

I built a small but mighty Support Dream Team when I went back to working and living on my own after eight months of living with my parents, resting like a boss. I’d been getting a ton of support from my parents – cooking, paying for food, etc. – and I was going to move in with my partner back in Boston, who also had a chronic illness. I wrote my five closest friends in Boston, explained that I was excited to be back, wanted to see them, but was still sick and in need of support. Would they help in the following X, Y, and Z ways?

One of those friends still cooks me dinner at least once a month because she knows I love it and it brings her joy. Another friend took me out to dinner a bunch at places where I could actually eat. She picked up the tab and it gave us a chance to go out when I didn’t have the cash to. A couple other friends helped me move three different times in the following eighteen months. It was the f-ing best, let me tell you and my friends have told me that they’re grateful that I was real with them and asked for help. Previously they’d wanted to help but didn’t know how. They were so happy to have concrete ways to help me get better.  Contrary to all my biggest worries, I’m still friends with all of them and now that I’m feeling better, I have more and more energy to support them, something I worried I wouldn’t be able to do.

While we like to get super guilty and weird about asking for help, when we ask for support, we are actually being a contribution to the people we are asking. 

To Able-Bodied People: We Have Ambitions Too

To Able-Bodied People: We Have Ambitions Too

A person very close to me told me last week that based on the way I appeared to be living my life, they didn’t think I had any ambition. Hearing that was very painful on a personal level because I feel like I’m busting ass to improve my health and build a meaningful and sustainable business, but the comment also reminded me of how frequently able-bodied individuals misunderstand the experience of having a chronic invisible illness. Just because we’re not applying to law school, or meeting other societal measures of “success,” does not mean we aren’t holding big hopes and dreams in our hearts. Some of us are simply on a different, much longer timeline. Some of us are putting an enormous amount of energy into being as well as possible so we can do even very small things that bring us joy and fulfillment.

It really gets me when able-bodied people wonder what we do with our time, or belittle our dedication to our health, because of the social pressure to prioritize everything else before self-care – job, family, housework – is precisely why so many people struggle with it. Nearly every person I’ve had as a client has said that they know that doing x, y, or z would help them feel better but they aren’t doing it or aren’t doing it consistently enough to get the results they want because they don’t feel justified in putting their health first. Usually, it is a worry about being selfish, sacrificing career goals, or not making enough money that holds people back from doing what they know they need to do.  It’s just true in our society that you need money for basic needs but usually coupled with that financial-flavored worry is a bunch of worries about what others will think if we take time off, say no to a “great opportunity,” or make other choices that seem crazy to a well person.

I used to be there, wrapped up in all that worry and struggling to do things the way other people do them. I chose instead the sometimes unpopular path of putting the health of my mind, body, AND soul first, so I can get back to my metaphorical fighting weight. All I want to do is to kick ass. I envision myself as a changemaker, movement leader, or maybe even elected official, ideally reconstructing the American healthcare system and more generally pushing America to live up to its full potential. I also want to be a dog owner, a published author, a hobbyist farmer, a homeowner, an awesome coach, and a regular hiker and biker. I see, now more than ever, that I can never do all of that as long as I’m belted into my seat on the struggle bus. 

But, as many of my spoonie brethren understand, choosing to step off the struggle bus is not without its side effects. The choice can mean delaying or even eschewing a lot of the common social indicators of success and this can be especially hard for us younger folks, both because we want those things and because we can face scrutiny from people who don’t get it and wonder why we aren’t doing what our peers are doing.

The person who said I had no ambition was holding me up against other 32-year-olds with my education and opportunities. I've been very privileged yet I’m not married, I don’t have kids, and I live in a rented house with six other people. I don’t have a masters degree, and I’m building my own business instead of working a “good” job. I can’t think of anyone in my college educated peer group who doesn’t have at least one of these social success indicators on lock. I’m certain that I could have all those markers of “success” right now, but I’m sure I would be in pain, exhausted, miserable, and isolated. I still want some of those things, but I’m happy to wait.  In my present life, I’m happy, in love, making plans, I have time and energy to do things I love, and while I still have bad days, I’m seeing measurable improvements in my health. The only thing that sucks about being an outlier, other than not getting to eat pizza, is other people completely misunderstanding my motivations.

I can see how it’s easy for someone to assume that I’ve chosen this lifestyle because I’m a hippy, or lazy, or an idealist. The truth is that, at least in the near term, I have chosen to chase a different kind of success. I’m pursuing a PhD in being alive and considering health my wealth right now. I’m looking forward to being the Alice Walton of physical vitality. Just because the choice to prioritize health is not valued in our society, does not mean it’s not incredibly valuable.

Lessons in Emotional Acceptance & The Chinese Medicine Body Clock

Lessons in Emotional Acceptance & The Chinese Medicine Body Clock

One thing that really gets me is not knowing what’s going on with my body. I know I’m not alone in this. I spoke to a brave soul in a consult last week who is on a serious mission to get to the root of her chronic pain. She’s getting all the tests done, and seeing all the practitioners she can, including unconventional ones. All she wants in the world right now is the answer.

I feel her. I know what it’s like to be a medical mystery and nevertheless determined to find a root cause. That’s been most of my experience for the last 17 years. It takes a lot of energy and emotional fortitude. While I’m now more okay with not knowing what’s going on, I still get panicky, or impatient sometimes, and frantically search for people who can help me. It happens when I get depressed too. I think, “I NEED to get support. Who can I call?”

 What I’m learning though, through my experience, and that of so many people in my community, is that a huge part of the answer to what ails us lies within. But, when we are frantically searching for answers outside ourselves, we can’t be present to the answers inside. That perpetual outward gaze sets us up in a cycle that keeps us sick. We spend a ton of energy going to the doctor. We don’t get answers, or the meds don’t work, and then we’re sad and frustrated. A lot of us know intuitively that the outward gaze isn’t working and there is information inside us, but because we’re so conditioned to look outward, we keep doing it, even when it’s not working for us.

Here’s an alternative approach: Create space to talk to yourself and listen to what you hear. If you do it a few times and feel stuck, or aren’t sure what to do with the information you get, call in the support of people who can help you interpret what you’re hearing. I’m not saying don’t go to the doctor. Do! But just as you go to the doctor for support with your body, you’ll want to find folks who can support you with the mind and soul side of healing too. You can learn so much on your own though, simply by creating some space to be with your body’s signals, a.k.a. symptoms and emotions.

I’ll share a recent example from my own life.

Since January I’ve been having intermittent one-sided pain in the middle of my back after I eat. I did my due diligence and got an ultrasound to rule out gallstones. I didn’t have any stones and everything looked normal. I saw a gastroenterologist who said it could be an acid issue or nerve pain. To explore the acid issue, I started taking HCL and it did go away. Then it came back, starting slowly and then getting much more persistent. I also began waking up every morning between 4-5am. One of my practitioners said something about waking up at “lung time” and I wanted to explore that further.

In Traditional Chinese Medicine, consistent late night/early morning waking times (and midday sleepiness) are associated with different meridians, or energy channels in the body.

TCM clock.jpeg

 

Each meridian is paired with an element – earth, water, metal, wood, and fire – and each element is associated with certain emotions. My 4-5am slot is metal, which corresponds to grief and loss.

TCM organs and emotions.png

When I saw that, my first reaction was frustration, “I haven’t had any losses. There’s nothing to grieve.” My herbalist and others have told me that the right side headaches I’ve had for years are associated with anger and my reaction to that has been similar, “My life is pretty great, What is there to be angry about?” But, since I was sick of my back hurting every single time I ate, no matter what I ate, and even sometimes when I didn’t eat, I decided to give myself some space to ask these questions and listen to the answers. I sat down on my back porch with some herbal tea one morning and wrote down the words “grief and loss.” Then I wrote the questions, “What might I be grieving? What have I lost?” And I started writing. It turned out to be a long, emotional list. I had a good long cry about it and it was a pretty cathartic experience overall. My back hurt a lot less afterwards and I stopped waking up at 4am.

In general in my life, I like to focus on what I’m grateful for and how to move forward. Lately, I’ve been so focused on getting treatment and growing my business that, outside of the yoga studio and a couple neat workshops, I haven’t given myself much space to just be with what’s coming up for me. I certainly haven’t allowed myself to acknowledge that living with a chronic illness is actually pretty hard. Sometimes I forget that.

It’s just true that I have to spend a lot of time doing things for my health that other people don’t have to do. It’s true that I don’t have as much money as a lot of my peers because I’ve spent a lot of time not working and spend all my money on treatment.  It’s also true that I can’t just decide tomorrow to take a sweet management job at my favorite solar company, or launch a healthcare revolution, or pursue my dream of being a U.S. Senator. It could be a long time before I’m able to do any of those things.  I may not get to do them at all. And, I’m seeing again that  it’s okay to be bummed about that. Allowing myself to feel that loss and sadness doesn’t mean I’m going to get mired in it and lose everything I’ve achieved so far. (I have that fear sometimes.)

I often tell my clients that positive thinking is for suckers and I really do believe that. We can’t just think our way out of our suffering. We do get to decide how we want to be with whatever is happening in our lives – pain, loss, an annoying coworker –  but first we have to see clearly what the truth about that is for us. Even though most of us in America aren’t taught how to see our truth, there are a lot of ways to do it. It could look like meditation, sitting in quiet reflection, journaling, shamanic journeying, getting hypnotized, getting your butt coached by someone like me, or something else that resonates with you.

When we lose sight of the truth, which everyone does, we can choose to be compassionate with ourselves and simply turn our attention back towards it. All the above tools are there to support us in seeing it again, honoring it, and choosing again how we want to be with it. It’s kind of like getting to have a recommitment ceremony with yourself again and again for the rest of your life. That wouldn’t be the worst thing in the world, right?

If you’re thinking, “That sounds nice, you crazy hippy…” I hear you. I would have said the same thing five years ago. And, if all you’ve ever known is science-based medicine, this may sound very foreign and quacky. Just know that we have a lot of wisdom in our bodies and there are many ways to access it. It’s not something you learn overnight. It takes dedication and an open mind.

Sex and Chronic Illness

Sex and Chronic Illness

 

I don’t think we talk about sex enough in the chronic illness space. There’s so much I could write about but the conversations I have with folks tend to fall into three main categories:

  1. Not being able to have sex, because of pain, lack of energy, and loss of libido,

  2. Figuring out how to have sex in light of health-related limitations, and

  3. Communicating with sexual partners who do not fully understand limitations.

Really we could write books about this but I’m going to do my best to talk a little about all three today. I’m going to get a little personal with you all so if you don’t want to think about me as a sexual being, you can stop here and turn your attention to puppies instead.

First, there are different schools of thought around whether or not we should be having sex while we’re on a healing journey.  I’ve read in multiple places that men, in particular, should refrain from sex while they’re healing. Something about ejaculation being a waste of vital life-force energy needed for healing. I say do what you can and use your best judgment. Even if you can’t do it the way you used to, with yourself or others, it’s worth experimenting. Sex helps you feel alive and it can be an incredible pain reliever. If you have a partner or partners, it can help you feel connected and fight the isolation that can come with chronic health challenges. Of course, if you’re asexual, rock on with your bad self. Sex isn’t the only way to heal and feel alive.

Though there have been times in my healing journey when, even with the best toys, I was too exhausted to masturbate, let alone have sex, I have mostly found sex to be a powerful healing tool. Sex is the only thing that always dissipates my cluster headaches. It can take awhile for me to get me into the mood when I’m in pain, but I feel like a million bucks post-orgasm.

IF YOU CAN'T HAVE SEX THE WAY YOU USED TO

If, because of your health challenges you can’t have sex the way you used to, see what you CAN do. There are more ways to orgasm than there are spoken languages and now we have the internet so you can learn about all those ways. If research isn’t your thing, experiment and play! If you’d like to experiment with toys or get some one-on-one advice, my friend Rachel Dwight runs an online sex shop for people with non-normative bodies and does consultations. 

IF YOU CAN'T HAVE SEX

If you really can’t have sex because of pain or loss of libido, take a conscious break. It can be devastating at first and it can bring up a lot of shame, guilt, and awkwardness if you have a sweetie, or sweeties, who want to make sweet love to you. Plus, it just sucks when you can’t have sex as much as you want or the way that you want to because sex helps us feel alive.

But, pain can be healed and so can the causes of libido loss, and taking a break can be an important part of your healing journey. Remember that it doesn’t mean you’ll never do it again. (Of course, because of paralysis and other conditions, you may not be able to have sex at all. I will not address that in this post.)

 If your libido is missing in action, here are some things to keep in mind:

  • You’re not alone. If you are in a support group for your illness, you will probably find a lot of others in the same boat sex-wise. If you aren’t familiar with pelvic floor dysfunction, vaginismus, or volvodynia, do a quick Google search. Folks with those conditions aren’t having a lot, if any sex, and some have bravely shared their stories on Facebook, blogs, and probably wherever you consume your media.  
  • People complain a lot about loss of libido as a side effect of psychiatric drugs. Sometimes drugs are needed, I’ve taken them, but educate yourself on the alternatives like herbs, breathwork, and the Walsh Approach.
  • Maca powder, ashwagandha, and cannabis are known to boost libido. If you’re not excited about taking another supplement or powder, there is cannabis lube that can be very stimulating.

COMMUNICATING WITH PARTNERS

It’s natural for your partner to be disappointed if your health challenge changes your sex life in a significant way. See if you can have compassion for them and yourself at the same time. If you want your partner to do something differently with you in the bedroom, ask! They can’t read your mind but they’re probably happy to oblige. If you try something new and it’s awkward the first time, it doesn’t mean it’s never going to work. If you try something new and it doesn’t work, it doesn’t mean another thing won’t work. Talk about how you can both create a safe space for creative trial and error with each other.

 If you’re not able to effectively communicate your physical reality to your partner, or they aren’t able to understand it, it might be a good time to get some support from a couples counselor or life coach who works with couples. I was shocked to learn recently that talking about sex is just starting to be an integral part of couples counseling. When you’re shopping for a counselor, seek out one that has training and/or expertise in talking about sex.

If you haven’t already, you might have a conversation about non-monogamy. It’s becoming more popular and it can actually bring couples closer together. It only works if all participants are consensual and happy with the arrangement though. More good info on practicing ethical non-monogamy, sometimes called polyamory, here. If that is something you’re interested in, and you’d like some relationship support anyway, know that there are counselors and coaches who have experience helping couples open up and navigate non-monogamy.

If your partner refuses to hear you or believe you and isn’t open to getting support, or becomes abusive in anyway, seek out support for yourself right away. Nothing will accelerate your health challenges like abuse and/or trauma.

The Upsides of Being Open at Work

The Upsides of Being Open at Work

Clients and other spoonies I meet frequently ask, “how much should I say about my chronic illness at work?” I always say, be as open as you’re willing to be without sharing the juicy details or your bathroom visits and doctor's’ appointments. That said, being open about your health challenges, even just a little, can bring up a lot of what-ifs.  What if I lose my job? What if people don’t understand and give me unsolicited advice I don’t want to hear? What if my boss and coworkers look down on me or stop giving me meaningful work? What if people think that it’s all in my head because I look fine?

Experiencing worry about these things is totally normal. It is true that sometimes people don’t get it and sometimes workplace discrimination occurs. But, being willing to be courageous and open up about your challenges can have huge upsides. I’ve helped a ton of my clients overcome the fear and reap the benefits of being open.

Based on my experience and those of my clients, here are just some of the possible effects of being open about your health challenges. Being open can help you:  

  • Be more honest with yourself about how you’re feeling and what you can and can’t do.
  • Get accommodations so you can work, or keep working with a new sense of ease.
  • Connect with others who have your same challenge(s) and can help you find doctors, support groups, etc.
  • Be yourself so it doesn’t feel like you’re hiding or wearing a mask all day.
  • Save energy because you’re not always pretending or worrying that people will learn your secret, or trying to do things that are really hard for you physically.
  • Ask for and receive support from people who love you and want to make your life easier.
  • Build more meaningful relationships because you’re being vulnerable and courageous and people feel comfortable being those things in your presence.

Not too shabby, eh? If all that sounds good and you’re still scared to be open at work, know that that is normal and consider that, while it’s possible to get a bad response, it’s also just as possible that your employer could be understanding, supportive, and accommodating. And would it be okay with you to work in any other kind of environment?  Think about how much of your time you spend working. If you do not feel safe and supported at work, it can have a huge impact on your physical and mental health. Toxic and unsatisfying work environments can even be the cause of chronic health conditions. Still, people frequently stay in positions that don’t work for them out of fear of losing health insurance, income, etc.  This pattern is so prevalent that another chronic illness coach named Rosalind Joffe specializes in helping folks get out of toxic work environments.  It can be scary to jump ship but it can also be an extremely effective step in regaining your health.

So what does being open about your health challenges at work really entail? It’s entirely up to you. You get to decide how much you want to share and when you want to share it. By law, you don’t have to disclose anything, but even saying that you have something, without being specific, can support you in getting accommodations that might make your work a million times more pleasant.

It might seem like a stretch at first, especially if you’re undiagnosed, but it is useful to see your health challenge(s) as a disability. Under the Americans with Disabilities Act (ADA), which protects individuals with disabilities from discrimination in their place of employment (and elsewhere), you have a disability if you have a physical or mental impairment that substantially limits one or more major life activities. More here on what constitutes a disability under ADA.

And when do you tell an employer that you have a health challenge?  When starting a new job, I’ve both been upfront about my limitations and accessibility needs in the interview, and have waited until receiving a job offer to reveal that I may need special accommodations. It has worked well for me both ways. When I was first diagnosed, I waited until I said I was leaving to tell my boss but I wish I had told her much earlier. She was incredibly supportive and has since offered me part-time positions and connected me with other employers.

If you see that you desperately want to be open with people but you’re having trouble actually doing it, you may want to hire a coach to get you over the hump. It’s totally worth it.

Adventures in Spooniepreneurship

Adventures in Spooniepreneurship

I haven’t written in a month and it’s because I was learning some valuable lessons about Spooniepreneurship, or the willingness to start and manage a business as someone with a chronic illness (people with chronic illness = spoonies).

In late 2014 I hired a coach because I was sick of burning out, and sick of being sick. It became clear in our work together that the best way for me to do work I loved and have the time I needed to take care of myself was to start my own business. I’ve always been entrepreneurial, and I’ve started a lot of things, but I usually got sick before I could see them through. So, I dove into this adventure head first but always with some doubt about how I’d be able to make it sustainable.

Some of my biggest worries early on were that:

  • I wouldn’t be able to work enough to run a business when a) I spend a lot of time in bed and b) I have to spend 20-30 hours a week on self care. (I made a spreadsheet and calculated all the time I spend on self care.)
  • Clients would fire me if I rescheduled them too much.
  • Learning about internet marketing, taxes, and business stuff would be frustrating and mean a ton of time looking at a screen, which I hate.
  • People would think I was dumb because I get brain fog, lose words, and can’t remember things.

 At this point, I’m a certified coach, I’ve been coaching for two years, and coaching is my primary source of income. I can’t speak to people thinking that I’m dumb but so far no one has fired me for rescheduling. In fact, my clients have been very supportive, and I’ve seen that I can keep the business moving even if I can only work 10 hours some weeks. I do a lot of things differently from how a non-spoonie entrepreneur might. I’ve done some pretty productive writing from my bed, for example, and I rarely work more than 3-4 hours at a time without a significant break. In sum, I learned that all those fears I had were pretty silly. My number one biggest challenge, it turns out, was my fear - and in particular, my fear of not being successful.

Recently, I got a little too stressed about my work, ignored signals from my body to take it easy, and ended up in the Emergency Room with heart attack-like symptoms. All the tests came back normal and I later learned the symptoms could have been Lyme-related or related to a viral upper respiratory infection. I had been extra tired before the incident and on either side of the ER visit, I spent a lot of time in bed, and a lot of time crying. I was scared and super sad about being sick again after almost a year of feeling much better. I also felt sure that this recurrence of symptoms would lead to the inevitable moment when I’d have to bail on my business.

I see now that this latest health adventure was really just my body, the essence of my being, the Universe, or whatever you want to call it, telling me that I needed to chill out and take everything down a few notches. Instead of listening to that incredibly useful message, I was listening to my Monkey Mind (the internal dialogue we all experience that’s full of self-doubt, what-ifs, judgment, and criticism) like it was my beloved guru. “Oh yeah, this is gonna suck and you’re going to fail, just like all those other times.” As a result, I was stressed and working more than I should have been to prove my Monkey Mind wrong. You can see how well that worked out for me.

We all have patterns and internal conversations like this that contribute to our dis-ease. Becoming a spoonieprenuer really put my patterns front and center for me. Some amazing coaches and energy healers have helped me see just how clearly the patterns not only hold me back but keep me sick. Seeing that clearly hasn’t always been a party but it has given me the opportunity to choose something different. In my case, I’m regularly seeing scarcity thinking and choosing instead to look for abundance. When I’m not worried about not having enough time or money or health to be successful, I can see so clearly what I do have.

Historically, one of my most familiar worries has been that I’ll have to do everything alone, that no one is going to help me. And, as if someone was trying to say, “oh yeah? Let me show you how wrong you are!” I’ve been showered with support in the last year. An old friend has offered me countless hours of social media marketing advice and even sent me money to sponsor some video content. Someone I met at a support group three years ago called me to offer advice on a new program. My herbalist snuck me in for a last minute appointment last week without charge. Two different business coaches have offered me complimentary access to their programs. Clients old and new have reached out to share how much they’ve been inspired by my work and to urge me to keep it up. In choosing to look for evidence of abundance instead of scarcity, I can see that people want to support me in doing this big thing and I need to allow them to do that.

Coaching is a great way to identify and overcome these patterns and it’s a huge part of the work I do, but there are other modalities too.  I had great conversations about patterns recently with energy healer Heather Smith and yoga therapist Alex Bauermeister in the first two episodes of Healcast, a series of interview and Q&A sessions with holistic healers on Facebook Live. You can watch the videos here. If you feel called to get clear on your patterns, I recommend trying a few of these modalities to see what resonates with you. Heal on!

YOGA FOR TRAVEL

YOGA FOR TRAVEL

I have the privilege of calling the extremely talented and ever-so-lovely multi-instrumentalist Rob Flax one of my yoga clients. He's about to go on a big tour and he asked me this week what kind of yoga he could do on the road. I put together this list of modified poses to keep his body feeling as good as possible between countless hours of traveling and playing.

Of course, anyone, musician or otherwise, can benefit from doing these stretches to counteract all the sitting that comes with modern travel. If you experience any kind of back and/or neck pain while traveling, you are going to like this post! All these poses can while traveling – on a bus, on a plane, or in a waiting area.

Many thanks to actor Glen Moore for being my model.

SEATED FIGURE 4

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You can do this one right in your seat! Start with both feet firmly on the floor, lift the crown of your head and find a long straight spine. Place your right foot on top of your left knee. Flex the foot. Then you can begin to hinge forward from the hips if you have the space. You may not need to fold very deeply to feel a stretch in the back of the right hip. Hold for at least ten breaths, then switch feet and repeat on the other side. 

NECK

Put your hands in your lap and relax your shoulders. Take an inhale and on the exhale, tip your right ear to your right shoulder, stretching out the left side of your neck. Stay for a couple breaths, come back to center on an inhale, and then tip your left ear to your left shoulder on an exhale. Take a few breaths. Come back to center. Then bring your chin to your chest to stretch out the back of your neck. Stay for at least five breaths in each place. 

HAND AND FINGERS

Reach both arms out in front of you, and spin your right hand around so your palm is facing up and your fingers are pointing down towards the floor.  Wrap all the fingers on your left hand around all the fingers on your right and  gently pull your right fingers back towards you. You can bend your right elbow if you want a little more stretch. Take 5-10 breaths and switch sides. 

Then, stretch each finger individually, starting with the pinky and finishing with the thumb. Be sure to wrap all four fingers of the left hand around each finger you're stretching on the right hand. Then switch hands. 

 

QUAD STRETCH

Stand with both feet firmly on the ground. Grab the seat in front of you or next to you for support and grab your right foot with your right hand. Reach your knee down and back and pull your foot closer to your backside. Hold for 5-10 breaths. Switch sides. 

I've done this both at my seat on a bus (while it was parked) and in the aisle on a plane. 

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If you can find the space to stand in a lunge, do that too, and hold for 10-15 breaths on each side. Make sure your front knee is over your front ankle and you have a small bend in your back knee. Always do both sides. 

FORWARD FOLD

This forward fold is also great if you can find the space to do it. 

First stand tall and interlace your fingers at the base of your spine. Reach your knuckles down towards the floor and spread your collarbones wide. Then bend your knees and fold forward. Stay for a few breaths. If you don't have the space to fold, you can still get a lot out of the interlace and stretching your knuckles down towards the floor. 

FOREARMS 

This one is probably best suited for a waiting area as it requires you to stretch out to your full wingspan. Reach your arms straight out at shoulder height. Then lift your fingertips up to the sky for a nice stretch through the underside of the forearms. Stay for a few breaths. 

Keeping your arms out, rotate your arms so your palms face forward. Then fold your thumbs into your palms and wrap your fingers around your thumbs.

Then point your knuckles down towards the floor and pull gently on your thumbs for a nice stretch across the tops of the arms.

LEGS UP THE WALL

I've only been able to do this in the airport. If you can find a mostly empty waiting area with a free wall, you can take the deeply restorative viparita kirani at the wall. I was told by another yogi years ago that 20 minutes of viparita kirani is as restorative as two hours of sleep. As someone who's always tired, this is my go to pose. It is really good for surviving delays, long trips, hangovers, or sleep deprivation.

Sit on the floor with your right hip up against the wall. Rotate your torso and legs to the right so your back is on the floor and your legs are up against the wall with heels pointing to the ceiling. Stay as long as you like but really take your time coming out of the pose. Roll on to your side, stay there for a few moments, then come to a seated position on the floor. Stay seated for a few breaths before attempting to rise to avoid a head rush. 

OTHER TIPS FOR MORE COMFORTABLE TRAVEL

  • Drink lots of water. Staying hydrated will help your body feel better through all the transition. 
  • Have some kind of lumbar support. You can buy a special pillow just for this but even rolling up a jacket and placing it behind the lowest part of the curve of your spine can give you some support and make sitting for long periods much easier. 
  • Most airports have prayer and meditation rooms. Seek one out to get some peace and quiet, and a break from screens. It might even be a good place to put your legs up the wall.
  • Bring healthy snacks. It can be hard to eat well on the road but avoiding sugar and processed foods can make a big difference in keeping your body comfortable. Plan ahead and buy your favorite granola bars, pemmican (like Epic or Tanka), or other snacks in bulk. Travel will often back you up so prunes are a great snack to keep on hand too.  : )

The Challenge of Being Idle

The Challenge of Being Idle

I’ve been coming across more and more people of my generation who are very uncomfortable with unstructured time. Like the rest of America, they are so busy most of the time that when they are not busy, they don’t know what to do. Furthermore, they worry that if they rest or enjoy even a few hours of idleness, it will mean they are being lazy, unproductive, or even worthless. Throw in a debilitating chronic illness that keeps someone in the house, in bed, or generally unable to do a lot of things, and this discomfort and worry is compounded in a huge way.  

Interestingly, it’s our inability to be still and idle that lands so many of us in doctor’s offices in the first place. We’re not designed to be “on” all the time. The brain and body need time to rest. We also know now that idleness actually increases blood flow to parts of the brain which can improve creativity, and make you more productive later on.

So what’s our beef with doing nothing? Some of it is cultural, for sure. The norm is to always be busy, and, as the second article linked above mentions, defaming idleness has been on the rise since the Industrial Revolution. Additionally, some of us millenials had very structured childhoods, full of not only school but endless sports events, club meetings, concerts, and recitals. We didn’t get a lot of opportunities to entertain ourselves and explore. And smartphones certainly don’t help the situation for any of us. Remember how people used to have brilliant ideas while they were on the toilet or in the shower? Now we take our phones into the bathroom to check e-mail or listen to podcasts. We’re allowing ourselves less and less time to space out.

I am a recovering workaholic and chronic overachiever myself. One of my college professors even called me the latter, and while I took it as a compliment, I sort of didn’t believe him and felt like I always had to be doing more to try to make the world a better place.

After burning out from a demanding non-profit job in my early twenties, I took jobs at a cafe and a farm to explore a less stressful lifestyle and take some time to get my health in order. I was surprised to find that I suddenly had ideas for poems and art pieces again. I began blogging about anything and everything, and I doubled the size of my vegetable garden plot. I was pretty happy with my downtime. Then at some point I decided I needed to get back into the career game. I took a cushy academic 9-5 job that I was really pumped about. My boss was great and so were the benefits. I did interesting work but didn’t have to take it home with me. When I stayed late I got overtime. I saved money and had time to do other things.

After about six months of suckling on the teat of academia, I began worrying again that I wasn’t doing enough. I was supporting people in learning about the Middle East but I felt like I needed to be organizing, working in the community, trying to make more change happen locally. One volunteer gig led to another and before I knew it I was the Board President of a brand new non-profit, managing 15 people and building a volunteer program, on top of my day job, at the bright young age of 26. I was always working and always saying “yes.” I went to a ton of parties in that time and felt like I was really crushing life. That is, until I got in a bike crash, got a semi-serious concussion and experienced a huge resurgence in symptoms that I later learned were Lyme and Bartonella. Interestingly the non-profit was a bike advocacy one. The coincidence was not lost on me. It took me a little while but eventually, I saw the crash for the wakeup call that it was.

I had to leave the job and the non-profit because I was sick and my brain wasn’t working anymore. That was my third big burnout. It took one more before I finally began to slow down in earnest and embrace the slower life. I took eight months off from working. I’m very grateful that I was able to do that, because I might have worked myself to death otherwise. It took a little while to settle into doing nothing. I spent my 30th birthday on my parent's couch but surprisingly didn’t feel that bad about it. I was determined to set a different tone in my next decade on the planet. I began meditating, practicing yin yoga (which was so hard but so good), taking walks in the woods when I could, and intentionally cutting down on screen time. It made a difference in my energy, my brain function, and overtime it’s taught me SO much about how to listen to my body. I now regularly take time to stare at the wall or out the window and I treasure that time. None of these blog posts would happen without it!

I’m still an organizer and an activist at heart but I see now that the revolution will not happen from a place of exhaustion. Rest and unstructured time are crucial ingredients in a healthy and well-lived life. Why not strive to march into every battle – personal and political – well rested and with a smile on our face? That is what I’m striving for.

Why You Shouldn't Ignore Your Pain

Why You Shouldn't Ignore Your Pain

It is not normal to be in pain all of the time. If that has been your reality for years, though, it can be hard to remember what life was like without it. If it doesn’t regularly land you in the hospital, or even if it does, you might feel like the back pain, the foot pain, the cough, the stomach aches, chronic migraines, whatever you experience, is just you. That that is just who you are. And when doctors are unable to determine the cause of the pain, they can reinforce this feeling of hopelessness by making you feel like your pain is all in your head. If you’ve had this experience, you know devastating it can be. 

It is extremely frustrating not to know the cause and feel without solutions. It’s not surprising that a lot of us give up on finding the cause and do our best to ignore or push through whatever pain we are experiencing.

But let us take a moment to examine the consequences of ignoring our pain or illness. And I’m writing as a former professional ignorer myself.

At the most basic level, by ignoring pain and other symptoms you are ignoring a distress signal from your body. When ignoring the signal becomes your norm it’s like you’re perpetually living on a sinking ship. Even if the ship is just taking on water for years without sinking, it’s going to be pretty wet on board and it certainly is not going to get to port anytime soon. As the captain of this ship, you’re probably also at least a little worried about drowning or expending a lot of energy telling yourself that you’re not worried about drowning.

Worse still, pushing through or ignoring symptoms all the time makes you an asshole. Think about it. If you have been living on a sinking ship, with soggy socks and cold feet, for weeks, months, or even years, it is only natural that the chronic unpleasantness creeps into the rest of your life and impacts your career, your relationships, and your everyday interactions. It zaps your capacity to be patient, compassionate, kind, and loving, to others and yourself.

If you are living with a chronic condition and have embraced it, chances are you see the suffering in others all the time: that snappy woman at the grocery store, that man who gets unreasonably pissed at the café when his latte has the wrong milk in it.

The good news is that we can all choose a different path. Instead of being an ignorance-induced asshole, we can choose to be compassionate healers, heroes on our own healing journeys.

The first step is simply being willing – willing to acknowledge the symptoms and to do your best to get to the root of them, even if you’re not sure how right now.

So, my healing hero, are you willing?

How I learned to love solitude

How I learned to love solitude

Historically, I have hated being lonely and feared being alone. It started in high school and continued into my early thirties. Sometimes I felt lonely even when I was with people, and I hated that too. Some of it was related to being sick and feeling like no one had any idea what I was experiencing. I also had to opt out of a lot of social things because I didn’t have the energy. Before I was open with people about my illness, there were nights I would be home alone crying my eyes out, wishing someone would just come sit on my bed with me. I felt like there was no one I could call, and like it would be a burden to ask anyone to accommodate my special needs. I got over that but then swung in the other direction when I started feeling better.    

I’ve experienced huge strides in my healing in the last year. At some point, I woke up and had energy that I had not had in years. Suddenly I could go out again, go to concerts occasionally, and make appearances at birthday parties. I remember going to a concert in February 2016 and celebrating with my best friend afterward because I had stood the whole time and my feet didn’t hurt. It felt like a miracle. That energy was not consistent though. I had good days and bad days, and I went through a three-month period of experiencing flu-like symptoms for two days almost every week. But after feeling so isolated for so long, I seized what energy I did have and jumped on every opportunity I could to hang out with people, even if it meant spending a lot of time in bed later. Eventually, I recognized that I needed to reign in the social commitments, and I bumped up against the challenge of preserving my newfound energy. I found a new kind of anguish in having to say “no” to people a lot, sometimes at the very last minute. Sure, sometimes I felt a little guilty, but mostly I just wanted to be with people.  I’m grateful for the trips I did go on and the parties I got to attend, but as a super extrovert, it was painful to miss the wedding of two old friends, the camping trip that I had planned, and countless other events.

I decided that I needed a break from saying “no.” Even though I knew each time I said “no” that it was what was best for me and my health in the moment, it still sucked, and it was zapping a lot of my emotional energy. I realized just how much energy it was taking out of me when I left my home in Boston for two months and lived alone in Western Massachusetts. Within a couple days of being there, I felt an incredible sense of spaciousness. I had a ton of new ideas about my business and my writing. I found a new sense of ease in all my self-care practices and my health responded in positive ways.

Before the move, I’d been worried about being alone. My mom and my friends were worried too. Everyone seemed confused by my decision to step away from my rich support network. While I am extremely grateful for that network, I wanted to prove to myself that I was not wholly dependent on it. I wanted to see solitude as a gift and not a curse. I also wanted to see what it was like to isolate myself intentionally instead of feeling like I was forced into isolation. It turns out choosing isolation really works for me. I so enjoyed having my own space and the ability to do whatever I wanted whenever I wanted. I loved being able to put my supplements all over the house so I remembered to take them, and I loved the chance to go on lots of little solo adventures.  I had a couple visitors to feed my extroverted side, and that was fun, but I loved being alone again when they left. I only felt lonely on one day in the entire two month period and that was inauguration day. I was scared that day and just really wanted a hug. Luckily participating in a local Women’s March the next day cured the lonely feeling. Overall the experience was nothing but empowering.

Now that I’m back in Boston, in my house with six roommates, interacting with friends and colleagues, I’m feeling great about protecting my Noelle Time. I’m also finding a new ease in saying “no” to things because I know that I will be rewarded later for spending more time with me, myself and I. I have seen that when I take more time to be alone, I am much more present in my interactions with others and that contributes to my health, my career, and my relationships. 

After being home for six weeks, I had another breakthrough around loneliness and solitude just last week. I woke up on a Sunday feeling sad, angry, empty, and totally disconnected from my body and what drives me. There was no apparent reason or cause. I didn’t know how to be with it but it felt familiar. I found myself really wanting someone to come distract me from the icky feeling. I worried that maybe I was getting depressed again. Then I realized, this is how I used to feel ALL the time. I saw that there wasn’t anything wrong with me, I had just become disconnected and the reason why wasn’t terribly important. I also saw that what I really needed was some solo time to right my ship. And, after practicing yoga, meditating, crying, giving myself a lot of space, and getting some support from an energy healer friend, I felt like myself again, in less than 24 hours. Even though my instinct was to get someone over to fill the emptiness, solitude was the remedy.

Edited by: Kazmira Pytlak Nedeau

We Need to Stop Hating Our Bodies

We Need to Stop Hating Our Bodies

There are a lot of reasons that so many people in America are sick right now. We’re overrun with toxins in our food, our homes, and our personal care products; and our cultural norms produce a lot of stress. This week I was reminded of just how problematic our culture’s relationship with our bodies is while following the news of the Trump administration's decision to roll back protections for trans youth, and seeing the negative comments garnered by this recent viral video of a woman practicing yoga while her period bled through her pants.

In this piece on NPR, former North Carolina Governor Pat McCrory seemed most worried about transgender and cisgender youth sharing showers. So a cisgender boy sees a transgender boy with a vagina. So what? Why is this so unacceptable? And is this even a realistic fear? When I was in middle school and high school, us girls censored our own bodies — no one dared to use the shower in the locker room for fear of anyone seeing us naked — so McCrory’s concern seems baseless.

Our collective fear of genitalia, menstruating, defecating, fat, and our bodies in general causes great harm. It perpetuates bullying, sexual violence, and eating disorders, among other things. More subtly perhaps, it keeps us very disconnected from our bodies and makes it very difficult for us to appreciate all that they do for us.

I believe very strongly that in order to heal from illness, we must be in loving partnership with our bodies. Cultivating that kind of relationship is a big ask when you grow up in an environment that teaches you to hate your body, that your body is something to hide and to be ashamed of.  Hating our bodies and ourselves a social norm in America. Even some of the wellness movement perpetuates it. We value self-deprecating humor and we’re taught that abusing the body is cool, whether it’s through drinking, doing extreme sports, or simply just pushing ourselves to do everything. This is a big part of why we are so sick. So many of my clients, in addition to having a chronic illness, have a super negative body image and self-image in general. They also see that they’re awesome but they believe that they’ve only achieved what they have by beating themselves up. The result of that outlook is health challenges. The body pleading for a different way of doing things.

The good news is that we can choose to be non-normative in our body relationships. We can choose love and healing instead of hate and disease. We spend so much energy covering or hiding our bodies out of fear, shame, and hatred. When we accept our bodies as our partners in healing, we can shift that energy to listening, observing, and being present to what the body wants. And when we are present, we get a lot of valuable information. It could be that a certain food is a bad fit, or that a particular exercise is really helpful. Over time, all these little bits of information can add up to a whole new way of living.

There’s no one way to get there — it takes time and some trial and error, but it is possible for everyone to build a loving partnership with their body. If you decide to be a lover instead of a fighter when it comes to your body, you’re probably going to want some support. You might meet with a yoga therapist, a coach, energy healer, or some kind of spiritual mentor. Allow yourself to try a few different paths. If you hate the first thing you try, it doesn’t mean you failed. You may love the next thing! And just like with romantic relationships, there will be ups and downs and you will question your body just like you’d question a lover. Know that that’s all normal. Keep breathing, keep listening, and remember that your body already loves you. It is doing everything it possibly can for you. So, just like the girl in French class who has a crush on you, you might give your body a chance. :)

And if you’d love some support on what to try first, send me an email and we can have a chat about it!



 

Not Enough Money for Treatment? Consider Crowdfunding

Not Enough Money for Treatment? Consider Crowdfunding

Here’s what we know:

  1. Healthcare is expensive and not always helpful (sometimes completely useless) when you have a complex illness.

  2. Alternative medicine and healing modalities take some financial investment.

  3. It can be hard to pay for the treatment you need when you are sick, especially if you’re not working, or not working very much.

These truths leave a lot of people stuck. They see treatment options they want to explore but they do not have the funds to try those options or continue them once they start.

If this is you, you might consider crowdfunding for your treatment.

Before you close out of this blog post in disgust and move on, know that it is 100% normal to not want to ask people for money. Most people, aside from professional fundraisers, experience extreme discomfort at the thought of asking others for monetary support. You are not alone.

I too was once petrified by the thought of asking for money, for myself or others, and now I’m one of the weirdos who LOVES fundraising. I have done door-to-door fundraising, big event fundraising, letter campaigns, and a whole lot of crowdfunding, for myself, organizations, and people I love. I paid for most of my first two coaching trainings with crowdfunding campaigns because I was unemployed when I signed up for them. 

Here’s a little secret that I learned early on: people love to give money to support things they care about, and especially people they love. Not everyone can give, but that does not mean they do not want to.

And here’s another even cooler secret I learned from some wise coaches: When you ask people to support you, you are contributing to them. People want to support you and when you give them a clear way to do that, they are pumped!

Have you ever been to a party or at someone’s place for dinner and when you ask how you can help, they say, “I’ve got it” and then you feel awkward because you have nothing to do? And then have you experienced immense relief when you ask how you can help and someone says “you can open the salsa and put the chips in a bowl?” It’s pretty much just like that. Giving people a clear way to support you is like giving them a gift.

Chances are people who love you have been wanting to support you, even if they don’t know the ins and outs of your health challenge. And maybe you haven’t talked to them in years but you made them laugh so much at summer camp that they’ll say “yes” to anything you ask for. You don’t know this yet, because you haven’t asked, and that’s one of the best parts about crowdfunding -- it’s full of surprises!

You might be thinking, “That sounds nice but who will I ask?” The short answer is anyone who might say “yes.” Think friends, family, family friends, co-workers, former co-workers, classmates, and members of any groups, communities, or sports teams you are part of or have been part of in the past. Of course, you may want to be more choosy if you are not yet open with everyone about your health challenge or disability, or if you do not speak to your family, or for other reasons. Start making a list and see where it takes you. If can list between 50-100 people, you can likely run a good little crowdfunder.

If after doing that, if you think you might want to do this, the next step is to get clear on what you want to fundraise for and how much money you want to raise. My recommendation is to ask for a little more than what you need. This is both to cover unexpected expenses and the transaction fees for credit card payments. I recommend using the Generosity or YouCaring platforms because they do not charge a service fee. If you want to use video in your campaign, choose YouCaring. On these two sites, you only pay the transaction fee (3% + 30 cents on every donation). Kickstarter, GoFundMe, and others charge 5% on top of the 3-5% transaction fees. That’s up to 10% of your hard earned fundraised cash lost to fees. Some people think that being on one of the more well-known platforms will help them get exposure. That might be true if you were launching a cool new eco hammock company but it is unlikely to happen with a campaign for one person’s medical treatment. If you have a really great story, strangers will be inspired to give, but they aren’t going to find you because they’re browsing Kickstarter, they’ll find you because someone they know shared your page with them.

Your next step is to tell a really compelling story. Other than you just being awesome, why should people support you? What are you healing for? What are you about in the world? Focus more on what you’re working towards than how hard things have been for you. People like to invest in hope.

Then, you want to get your campaign out there to ask many people as possible using all your available communication channels. And then you will follow up, a few different times.

It definitely takes some energy, but it will be well worth it when you are getting the regular bodywork you need or seeing the specialist you’ve had your eye on for years.

If you want some more support on running a successful crowdfunding campaign, let’s talk! I’ve coached dozens of people to run successful crowdfunding campaigns and have resources to walk you through every step of the process. I offer 1 hour crowdfunding consultations to help you craft a great story, building your list, and plan your outreach so that all the people who want to give actually do. You can schedule a consultation here. Happy crowdfunding!