Look Forward

Recovery and Identity: Why Sharing Is Tricky

I got some lovely responses to my post on Noise in the Body. Most complimented me in some way for being brave.

I was also encouraged to speak more about my experience. In a few weeks, I’m scheduled to do a short Instagram Live storytelling session with Curable; other friends encouraged me to expand my post into a talk, or even a book.

This sort of encouragement is extremely kind. When you’re used to hiding something, it’s very comforting to hear “You’re doing great! I think the world needs to hear more!” And this is probably true; I suspect the world really does need to hear more detailed stories about stress illness.

Early on in my most recent recovery journey, I relied heavily on my faith for the wisdom and motivation to keep on going. One of my favorite writings stated “Nam-myoho-renge-kyo is like a roar of lion; what sickness can therefore be an obstacle?”

Following this thread, I was encouraged to work hard at recovering so that my victory could be a motivation to others suffering the same afflication. Once I started to feel like I was on a bit of an upward spiral, I had all sorts of ideas about how to do this. I would give talks about my recovery! I would change careers and become a pain psychologist! I would write to Curable and see if I could use my technology background to work with them!

It was around this time that I enrolled in Curable Groups. The program starts with a lecture on how we carry many identities, and how stressors can disrupt many of those identities at once. (I wrote about this in the context of the pandemic, but I learned it from the context of stress illness.)

We were told a very interesting story in this first lecture. The way I remember it, there was a migraine sufferer whose life was almost destroyed by chronic migraines. They had several a day for years, and it was all they could do to go on living.

This person eventually learned more about PPDs and started to recover. The frequency of their headaches reduced to once a day; eventually, it got down to once a week. They were understandably ecstatic (and, I hope, very proud of themselves.) They were so inspired and grateful for the relief that they immediately made it their mission to help other migraine sufferers.

They started a blog about their migraine recovery journey, and then a newsletter. Talking about migraine recovery turned into a successful business. They became a migraine celebrity.

On paper, this is a heroic story. Someone suffers through immense adversity, transcends it, and then uses what they’ve learned to help thousands of people.

Can you guess what happened next?

At some point, some folks in the “migraine community” began to question how much this person could relate to their pain. After all, they’d recovered; how could they really understand what anyone in constant pain was really going through?

Over time, the hero of our story started to experience more frequent migraines. From what I remember, they once again became a daily occurrence.

In their attempt to turn their recovery into life mission, “migraine sufferer” had become a durable part of their identity.

When someone has been through intense suffering, it’s natural for that experience to become a large part of their lives. This can manifest in different ways; however, for those suffering from stress illness, belief has a very powerful impact on the illness itself. This is why you might often hear people who are recovering from such an illness to say they “experience” pain instead of “having” it; it’s important to believe the pain is something that you move in and out of, something that can change. Believing that it’s something you have or that you are can be a significant obstacle to recovery.

It wasn’t until after I wrote Noise in the Body that I realized why I’d written it. It’s a common occurrence in my life for someone to ask: “Hey, do you remember [this period of time]” or “What’s going on with you right now?”. I often struggle to answer. It’s difficult for me to lightly approach the topic of “Oh during that time, I was barely surviving because my nervous system went berserk”; it’s also difficult to feign nonchalance or make something up. I kind of either want to share all of it, or none of it.

I wrote that post so that I could reference it in situations like this. Do you want to know what I was going through at that time? OK, I am very happy to share. Here is a pointer to the entire experience that you can dereference at your leisure, but I would prefer not to relive any part of it right now.

This lesson was a very important one for me to learn. I no longer want to be a pain psychologist, or to work for Curable. I don’t want to spend every day of my life helping the world recover from stress illness. However, if there are tactical, one-off ways that I can help – like showing up on a single Instagram Live session for a company that played a large role in my recovery – I’ll take the time to prepare myself for it, and I’ll do it. I’m happy to.

This illness of mine is born of ignorance and feelings of attachment. Because all living beings are sick, therefore I am sick.

If all living beings are relieved of sickness, then my sickness will be mended. Why? Because the Bodhisattva for the sake of living beings enters the realm of birth and death, and because he is in the realm of birth and death he suffers illness.

If living beings can gain release from illness, then the Bodhisattva will no longer be ill.

—Vimalakirti Sutra