Am I Still One of the Millions Missing?

May is ME/CFS Awareness Month.

A year ago I suspected that I had POTS and was waiting to be tested and seen by an autonomic disorders specialist, but I thought it was a likely diagnosis in addition to the probable ME/CFS I thought I had. No one seemed comfortable officially diagnosing me with ME/CFS, but I had doctors bring it up and agree that it seemed likely it was what I had, and my experiences in the patient community made me feel like I had found people who “got it.”

Last year I was involved with a local group of activists planning and organizing a Millions Missing visibility action in my city to raise awareness for ME/CFS and call for more research funding. I volunteered to print posters and brought multiple pairs of tagged shoes to represent people who were unable to make it to an event near them either because there wasn’t one close by or because they were bed- or housebound by their symptoms. I also put out a pair of shoes for myself to represent the life I was missing due to my own disabling symptoms.

This year I’m not so sure where I stand. (Postural pun unintended for once, but sure.)

What has changed since last year’s Millions Missing event that has led to this sort-of identity crisis?

ME/CFS and POTS

Shortly after last year’s Millions Missing, I was diagnosed with POTS. After almost three years of symptoms, I tested positive for something and was officially diagnosed; I finally had some semblance of an answer to what was happening to me and what I could do about it. The more I learned about POTS and dysautonomia in general and spent time in those patient groups, the more it felt like it really fit me and my experiences, often even more than ME/CFS. I can even point back to things that have been true about me as long as I can remember that line up with POTS, like being totally wiped out by donating blood and my hands getting tingly when holding them above my head. POTS/dysautonomia just makes sense for me.

But POTS and ME/CFS are not mutually exclusive; a lot of people are diagnosed with both. Fatigue is still my main symptom and I do not tolerate exercise well which points slightly more towards ME/CFS (exercise is often helpful for POTS), but at the same time I don’t have the neuroimmune symptoms common in ME/CFS after exertion, and a lot of POTS patients do also complain of fatigue and exercise intolerance.

So I know I have POTS, but I don’t know if I also have ME/CFS. If only there were a diagnostic test for it…

Am I still missing?

The short answer is yes, I am still missing from some important things that I thought would be part of my life right now (working mainly). But the longer answer is that, despite this, I am trying not to think of myself as missing from my life and instead focus on the life I do have and making it the best it can be. Thinking about myself as “missing” feels more at odds with how I’ve been thinking of myself lately than it did last year. Thinking of myself as “missing” right now makes me focus my attention on what I’ve lost rather than what I still have or what I even have gained, and I don’t really like it. I don’t know if that means I’m burying negative feelings I should let myself feel or if it’s just choosing where to focus my attention, but I’m working on that with my therapist.

The “missing” concept overall does work well for ME/CFS as the idea is that all of these people get sick and just sort of disappear from their lives so no one really knows anything is wrong unless they reach out. They (we?) are the Millions Missing. I’m just personally struggling with the idea this year because of where I am emotionally in the ongoing process of adapting to my not-so-new-anymore limitations. Maybe I’ll feel differently next year.

So…what am I doing this year?

I was not really involved at all in the planning this time around. I don’t know if it was just bad timing (things have been a bit busy), or if I felt too conflicted about my place in it all. Most likely it was some combination of the two.

I am definitely planning to attend my local Millions Missing event and will wear my red Millions Missing shirt. I will be there to show my support at least as a chronically ill ally with POTS, if not as a patient with ME/CFS. I will probably still put out a pair of shoes for myself including the things I do still feel I am missing from. I feel a little weird about it since I don’t know that I am missing due to ME/CFS, but I figure I am still missing in a similar and possibly-related way, and I am still someone who would benefit from the development of a diagnostic test to help determine what all I am actually dealing with. After thinking through the shoe dilemma I realized I hadn’t actually seen anything about a shoe display at my local event so I may be off the hook for that bit this year.

All that to say…am I still one of the millions missing? I don’t really know. I guess I’ll try to get comfortable back in some diagnostic ambiguity for now.