A Spoonie's Annual Report

A Spoonie's Annual Report

"Spoonie," if you’re not familiar, is a moniker for folks with chronic pain, illness, or mental illness, who have more limited energy than the average person.

2017 was my seventeenth year being a spoonie. In many ways, it was one of my healthiest years, which was a blessing. I also saw this year that I might have a shot of being pain and disease-free, a gift that many spoonies do not receive.

2017 was also my first year coaching full time. I quit my part-time job, coaching college students, in February. I was able to make the transition, and pay for some medical expenses later in the year, with financial support from my family. I initially felt a lot of shame about asking and accepting that support – like A LOT of shame – even though they were happy to help.

I asked because I’d cleaned out my savings paying for medicine and was operating at 40-60% of the average 32 year old’s energetic capacity. I saw that coaching full time would both help me make more money and spend more time healing but I didn't have the bridge to get there. 

Given what I could produce in the limited time I had on top of my part-time job, it could have taken me years to make the transition to coaching full-time. Even though that was just the truth, I kept saying to myself, “I have a degree and lots of privilege. I can work hard. I should be able to make this happen on my own.” And being hard on myself like this didn't make any of it easier. 

I see this shame + being hard on the self combo in a lot in my clients too. I think we get swept up in the American rugged individualism narrative and feel like failures when we can't be "successful" on our own, even when we're facing tremendous obstacles that no one could overcome solo. 

I eventually found some compassion for myself and, after a lot of coaching, let myself accept the support and follow my dream. I also realized that it’s not uncommon, across cultures, for families to support each other in business ventures and health crises when they can. It's what you do when you love someone and have resources to share.

I wanted to share openly my experience with support, and what I was able to accomplish this year as a result, in case it’s supportive for other folks. Being a business owner with a chronic illness IS challenging. Being an entrepreneur on its own is challenging, particularly the unstable income part. When you throw limited energy, flare-ups, and lots of doctor’s appointments into the mix, it can be a pretty stressful affair. That said, there are huge upsides, namely having control of your schedule and being able to take naps whenever it’s called for. I wrote about the ups and downs of my experience earlier this year in a post called Adventures in Spooniepreneurship.

Making spoonieprenuership work requires mastering the art of conserving energy and asking for and receiving a lot of support. For most of 2017, I didn’t really see a lot of people. I was saving energy (spoons) for my coaching business. I’m grateful for the friends who made it easy for me, who came and cooked for me, took me out to dinner, or were willing to go on walks or yoga dates. Eventually, I was able to branch out and have more fun, which was crucial for my sanity. I did, as you’ll see below, still get to go on some sweet adventures. There were some I didn’t make it to, and I feel okay about that. Sometimes rest is best.

Going over my personal data points for the last year helped me see clearly what I DID accomplish this year. It helped me shift my mindset in a productive way. I had previously been feeling like a failure, focusing my attention on all the things I didn’t do. I definitely set some goals last year that were really unrealistic, i.e. tripling my income and finishing a book draft. Because doing that on top of starting a business made sense? I live and learn! It was a great reminder that new projects always, always take way more energy than we anticipate. :)

When I look at these numbers I think, for year one of a new business, in a year that included six weeks of mold-related homelessness and an unexpected move across the state, I feel pretty stoked about this.

Spoonies can get sh*t done. Don’t let anyone tell you otherwise.

Noelle’s 2017 by the Numbers:


Total clients: 36

Coaching hours: 201

Coaching groups launched: 5

Online workshops: 8

In-person workshops and speaking gigs: 6

Yoga classes taught and subbed: 21

Coaching/yoga/healing/marketing workshops attended: 10

Videos posted: 21

Blog posts published: 26

Pieces in other places: 4

Total income: > $30,000



Doctors appointments: 15

Ondamed treatments: 15

Acupuncture appointments: 14

Chiropractic appointments: 33

Intuitive healing sessions: 20 (This is estimated as many were informal)

Yoga classes attended: too many to count



Voice lessons: 10

Camping Trips: 3

Art Museums Visited: 3

Pirate Museums Visited: 1

Plays seen: 5

Trips to see old friends out of state: 2

Friends visited me from out of state: 2

(Small) Mountains Climbed: 2

Potato varieties grown for the first time: 3

Expanding Enrollment for the Fight Against White Supremacy

Expanding Enrollment for the Fight Against White Supremacy

I wonder what Dr. King have to say about the state of our country today? I imagine he’d note how many more white people are now aware of the hatred that is still alive and well in our country. While there is still much, much work to be done, there are seemingly many more people interested in doing that work. And that’s a good thing, right?

As anyone who’s failed to keep a new year’s resolution knows, desire doesn’t always translate into action. But that lack of action isn’t always a result of ignorance or laziness as many assume. I have seen in my work as a coach that more often people are overwhelmed and unsure, paralyzed by not knowing how to contribute. Some folks truly don’t know what to do. Others don’t feel like they fit the mold of a typical activist, or don’t have time to volunteer for an organized campaign because of work and family obligations, or they simply can’t physically participate the way others can. I’ve talked to so many sick and disabled folks who want to be marching in the streets and haven’t figured out what they can do from home. All these people are deeply saddened and worried about their seeming inability to help with one of the most important challenges of our time.

Meanwhile, others work themselves to death. The recent passing of Erica Garner, daughter of Eric Garner who was killed by police in Staten Island in 2004, has had me thinking about how we can better support our most vulnerable activists. The 27-year-old mother of two had been fiercely campaigning against police brutality since her father’s death when she died from a heart attack caused by an asthma attack. We don’t know exactly what contributed to Erica’s health challenges but we know that health outcomes in African-American communities are the worst of any racial group in America. Erica was a perfect example of how often the most oppressed among us disproportionately shoulder the heaviest burden of reversing that oppression.

In the organizational side of the social change community, there has been a growing shift towards partnering with and supporting these most vulnerable front-line activists. That is necessary and good but activists need more than coalition partners. Who is feeding them, babysitting their kids, coaching them to delegate more, and encouraging them to rest because we want them in the movement for the long haul?

Everyone and their mom wants to start a non-profit, right? I’d love to see one that connects the up-until-now paralyzed would-be activists with existing front-line activists in their area. If you’ve ever been a burnt out activist yourself, you know how freaking amazing it would be if one of your neighbors texted to say, “Hey, I’m making vegetarian chili and cornbread. Can I bring you some?”

pie and white supremacy.png

Providing care is a vital role in the movement. Think of all the families who housed and cooked for civil rights marchers. While they may not have joined in the streets, they were serious heroes too. The work would not have happened without them. Now that many historic community-building institutions have crumbled and we’re all glued to our phones, we need to find new ways to connect natural caregivers to frontliners.

If we are going to create the deep and diverse relationships needed to truly dismantle white supremacy in this country, we must be willing to take care of one another. We, white activists, talk about the need to speak up, educated, and hold accountable our own neighbors, friends, and family members. Yes, we do. And, we need to start asking our neighbors and activist friends, especially the POC, if we can bring them a pie, watch their kiddos, or otherwise support them. A pie wouldn't have saved Erica Garner, but if we were all supporting each other in deeper ways, we may get to keep warriors like her around for longer in the future.

Dr. King said, “Life’s most urgent and persistent question is, What are you doing for others?” Let’s remember that care, while undervalued by capitalism, is the lifeblood of our revolutions.

Be Your Own Healer

Be Your Own Healer

As anyone with a complex, poorly understood illness can tell you, there’s a lot more to managing your health than doing what the doctor suggests. We usually find our way to complementary or alternative therapies that help us feel better and we learn, sometimes the hard way, how to eat right, manage our energy, and life-hack our way to the best reality we can create for ourselves. Living well, and healing is so much more than just taking care of the body.

You’ve probably seen the phrases “mind, body, spirit” or “mind-body connection” tossed around, but what does that really mean? It’s the ancient understanding that these three integral parts of us are intimately connected. Emotional pain can cause physical pain, physical pain can cause emotional pain, spiritual distress can cause emotional distress, etc. Every part of us is connected.

And, while our mainstream medical establishment acknowledges this connection, as evidenced by the increasing number of yoga and meditation programs in hospitals, most of the instruction we get from our doctors is strictly body-focused and often limited to medications and physical therapy.

In hanging out with so many people over the years with Lyme and other so-called “chronic” conditions, I’ve observed that the big difference between people who recover and the people who stay sick is always this mind, body, spirit link. Folks can do all the therapies and take all the medicines, but if they aren’t also nourishing their mind and spirit, they don’t fully recover. In the Lyme world, this looks like people who are sick for decades, or continue to get well but relapse over and over. It’s really important to address mind, body, and spirit with equal intention. Just as I would never suggest that someone focus only on the body, I would never suggest that someone strictly try and meditate their pain away either.

Why “so-called ‘chronic’ illness?” After supporting so many folks with health challenges, I believe strongly that many illnesses become and stay chronic precisely because people are not addressing all three parts – mind, body, spirit – with equal care and attention.

If you’re not addressing all three right now, that’s okay! It’s not like we learn how to do that in school, and so many of us grow up without spiritual nurturing, even if we grew up with a religious tradition. Also, you can start healing these other parts of your at any time. It doesn’t have to be complicated or require any money either. Simply taking more conscious deep breaths every day could change your life.

The late author and metaphysical healer Louise Hay popularized the spelling “dis-ease,” to illustrate that the cause of illness is a disruption to our natural state of ease. The Latin prefix “dis-” means “apart” or “away.” Illness happens when we get away from our body, mind, and spirit’s natural way of being, usually because of chronic stress or trauma that weakens the body’s natural healing abilities. The trauma can be emotional, physical, or psychological. And the physical cause could be something like a viral or bacterial infection.

I’ve found in my work that most people with chronic conditions have experienced multiple kinds of trauma, i.e. family abuse, multiple concussions, and grief over the loss of a loved one. On top of that, being sick for a long time is, in itself, traumatic, even if you don’t experience medical trauma.

And here’s the thing, you can’t heal trauma with a drug. You might be able to ameliorate the symptoms but the underlying trauma remains and can only be healed by nurturing the mind and spirit. This is where you have to learn to be your own healer.

I know. You just want someone else to make it all better. We all do. But that’s just not how it works, Beautiful. You may want to have teachers, healers, and mentors to support you along the way, but ultimately you are the one who knows you best.

So where to start? I’m actually writing a book about this (stay tuned!) but here are my initial recommendations:

Set the table for healing. Develop some daily practices that reduce stress and calm your nervous system. I recommend that everyone have a mindfulness practice, even if it’s 10 minutes of meditation a day, done in bed. Insight Timer is an incredible resource for starting a practice. Having a regular gratitude practice will begin to shift your mindset from scarcity towards abundance, which naturally reduces stress. Notice when you’re being hard on yourself or stuck in a worry loop. It’s super normal to be stressed and scared when you’re sick but the good news is you can shift your attention. Activist and healer Adrienne Maree Brown says, “what you pay attention to grows.” Focus your attention on the things that serve you.

Learn about spiritual practices and know that they don’t have to be religious. Spirituality, at its core, is about connection – to the divine, but also to the earth and other humans. It might be that sitting by the window and watching the birds helps you feel connected. That’s great. You might just set the intention to explore your spirituality and see what happens. Make stuff up. Create your own rituals. Try out existing spiritual practices. There’s no right way to feed your spirit.

Be curious and explore different avenues for healing support. If you’ve never seen a therapist or a counselor, that might be a great place to start, especially if your health insurance covers it. Know that not all mental health professionals are the same and it may take some time trial and error before you find someone who is a good fit for you. It’s ideal if you can find someone who is literate in your condition(s) and experience. Like, if you’re trans, definitely look for someone who isn’t going to misgender you constantly. If the idea of talking about your experience isn’t appealing, check out yoga therapy. It’s a wonderful healing modality that gets you out of your brain and into your body.

I also recommend exploring some of the often-called “woo woo” modalities to see if they speak to you. I’ve seen even super science-based folks get deep into the woo in the name of healing. You might explore reiki, energy healing, astrology, shamanic journeying, and plant-spirit medicine.

If you don’t have the budget to explore healing modalities outside of allopathic medicine right now, look for free opportunities. A lot of practitioners offer free healing sessions and workshops. They also get that being sick is expensive so ask about sliding scale pricing, or work-trade opportunities if your energy will allow for that. I also ran a video series called Healcast in which I interviewed different holistic practitioners about their work so you can learn the basics of some popular healing modalities like reiki, energy healing, acupuncture, and yoga therapy.

Play. Dance, even if it’s a finger dance. Talk to yourself. Explore and strengthen your intuition by making guesses about things that are verifiable, i.e. how many letters will be in the mailbox today? Place your hands where it hurts and imagine guiding healing energy into the space. See what happens. Be silly and look for hilarity everywhere.Laugh as much as possible. 

For support with any of the above, get in touch! Self-healing is my favorite topic!

Setting Goals You Will Score

Setting Goals You Will Score

You’ve probably heard the statistic that 80% of people who set New Year’s resolutions fail to stick to them after six weeks. Why is that?

It turns out it’s all about joy.

Most people set resolutions around things they “should” do rather than things they want to do. Recent research showed that enjoyment was the major factor in whether or not people did what they said they would do.

Let’s get rid of the “shoulds.” No one ever lived an incredible, fulfilling life by choosing again and again to do only what they “should” do. I’m not saying you can bypass everything that feels hard or unpleasant, but there might be a way to wrap it in something that brings you joy. More on that in a moment.

But what is a “resolution” anyway?

The dictionary defines it as “a firm decision to do or not to do something.” A decision, it turns out, is not an action. For many of us, simply deciding to do something doesn’t mean we will. I suggest that we get rid of New Years resolutions in favor of goals.

“Goal” is defined as “a desired result.” It’s so much more specific and actionable than a decision. Setting a goal doesn’t necessarily mean you’ll score it, but it can help you focus your energy and attention. The goal in itself defines success and gives you something to work towards.

Here is an example of the difference between a resolution and a goal.

  • Health-related resolution: I will go running three times a week in 2018.
  • Health-related goal: I complete a 10k race by April 15, 2018.

The desired result of both is to get fit and establish a running routine but isn’t the second one so much more exciting and motivating? To score that goal, you will have to run regularly. You will know you’ve been successful when you complete the race. After you complete the race, you can celebrate and set a new goal to keep yourself running.

So when you look at your 2018, instead of asking “what will I do?” you might ask, “what are the results I am willing to produce?”

To hone your goal-setting skills and get ready to produce some juicy results this year, come to my workshop on 1/17, Your Ultimate 2018.

Rest, Ritual, and Enjoying the Holidays

Rest, Ritual, and Enjoying the Holidays

If you've been feeling sick, depressed, anxious or otherwise off lately, let me tell you: you ARE NOT alone! I've had so many people reschedule this week because they are WORN OUT. Even the most intentional and focused in my circles are feeling off and I've noticed this happens every year.

The holiday frenzy means we're busier, often facing increased social and financial pressure, missing loved ones who aren't around, and on top of that, these are some of the shortest, darkest days of the year! Tomorrow, Thursday, is the winter solstice, officially the shortest day of the year.

We talked in the Spoonie Action Academy coaching group last night about what we need most right now and some great themes came up around purpose, rest, ease, and being gentle with ourselves. Inspired by that conversation, here are some of my tips for getting and staying grounded through the rest of the winter holiday season:

  • Be purposeful in your actions. If you don't have a meaningful reason to go to a holiday party and you'd rather rest, get your rest on!
  • Practice deep breathing and grounding exercises throughout the day to shift and focus your attention. Just taking three deep breaths before packing a suitcase will help you pack faster and with more ease.
  • Divide up your to-do's into small sweet steps and focus on them one at a time to prevent overwhelm. It's so simple but how often do you do it? :)
  • Take time for yourself. This is especially important for introverts and the chronic illness crowd. Socializing takes a lot of energy and it's important to recharge. This could be as simple as taking a walk alone or getting 10 mins of quiet time at the beginning of the day meditating, coloring, reading, or otherwise doing something you love.
  • Honor the sun by celebrating the solstice! You'll find that a lot of yoga studios have special restorative solstice classes designed to help you rest and celebrate the change in seasons. Not so into yoga? Here are some ideas for rituals you can do at home with friends, family, and chosen family. 

Take good care of yourself! It will support you and everyone around you to have a more joyous holiday season. 💛

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 whose  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.


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

Lessons in Emotional Acceptance

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, 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 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.


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!