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!