As I waited in the examination room, my excitement grew about seeing one of the world’s leading specialists for my condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I had seen him six months prior and felt that we were finally ready to get down to the business of improving my health. I have been chronically ill for 10 years and, for five of those years, I have been undergoing intensive treatment for tick-borne illness. I felt excited about the prospect of having access to new treatments and being on the leading edge in this field.
Instead of hearing about the latest breakthroughs in ME/CFS research, my appointment focused on lifestyle choices and pacing. It’s no coincidence that many patients with ME/CFS have type-A personalities – hard-driving, ambitious, energetic, seeking. That was me, like so many others, before I fell ill. Although my illness has forced me to slow down substantially, I seem to have a high tolerance for feeling poorly and pushing through my symptoms. And the second I feel a little better, I am out trying to do as much as I can get done. Until I crash.
Learning to Avoid Post-Exertional Malaise
A hallmark of ME/CFS is a phenomenon called post-exertional malaise, or PEM. It is poorly understood, but people with ME/CFS (as well as many autoimmune diseases) experience a crash after engaging in physical, mental or emotional activity. The triggers differ for people and the activity is often decoupled from the crash by days sometimes, making it hard to know which types of activities lead to PEM.
My doctor told me that PEM must be avoided at all costs and that, if I do not, I would not get better, and even run the risk of getting worse. This is the first time during my chronic illness that a doctor has said this to me. If I didn’t get on top of PEM, he told me I could decrease my chances for certain drugs to work. He informed me that the hard part isn’t when patients feel very sick – those are the times when we are already in bed and resting. It’s when we start to feel better that the trouble begins. This happened to me this past fall – I started a new treatment but was still working part-time and, for the first time in a long while, I started to feel dramatically better. Despite my doctor’s advice, I treated this as a license to push harder and harder with each gain in my health. Naturally, I crashed and am at a much lower baseline and the medications no longer appear to be having an effect.
What if the thing hampering recovery from chronic illness is your personality?
I like to live life large, even in my much diminished capacity. I love people, ideas and places and gain great satisfaction from being deeply engaged with these things. I love to make people feel good and probably have the people-pleaser gene that seems to get passed down to many women. I love exploring the natural world even though I have not been able to experience it the way I like to for years. I love my work – teaching ecology and conservation at the university level. I love being a part of the community – volunteering in my son’s school, serving on boards, working with local organizations. I have cut way back on all of these things. But even my vastly shrunken world takes energy I do not have and most of the time I am pushing through, only to crash again and again.
I don’t yet have the answers to this predicament but suspect it has everything to do with how I frame the challenge. Rather than viewing it as a process of giving up my favorite parts of who I am, I am seeing that much of what drove me in the past came from some unhealthy places and patterns. As a chronically ill person, I can still show people that I care about them and make meaningful contributions to society. I can relax in the moment more than I do and discover who I am in those spaces. Instead of feeling sidelined by my illness and doing everything I can to preserve the last vestiges of life as I knew it before falling ill, I can remind myself that resting even when I feel better may hold the key to a meaningful recovery. I can also uphold my end of the bargain with my doctor – by learning to avoid PEM, I stand a better chance of the treatments working and perhaps increase his willingness to try new drugs with me when they become available.
This morning I stumbled upon a quote by Elizabeth Gilbert that seemed to provide a clue for how this might go for me: “When you come to the end of yourself is where all the interesting stuff starts.” We shall see.
Published in The Mighty: