What I think about various chronic illness labels

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There are quite a number of labels people use for the name of their chronic illness. On this page, I discuss some of the ones I encounter the most as well as some of my own. Why do I care about labels? For a few reasons:

  1. For better or worse, labels are used as a rallying cry to try to get governmental (and other) organizations to conduct research on the illnesses. I may still benefit from research done for a label that doesn’t apply to me, but it seems less likely because the people doing that research would be fundamentally confused about what sort of disease they are even studying.
  2. Labels are used to exclude people (see example below of a Facebook group that rejected my request to join because my post-viral illness wasn’t from COVID; I also probably can’t get any disability income in the US because I have no formal diagnosis despite having seen about a dozen doctors). If some conditions are “more similar than different”, then using labels that exclude some people will unfairly prevent those people from accessing resources such as care/support, money, knowledge, etc.
  3. Labels are handy for quickly communicating to others what I am dealing with. It’s sadly not possible to have nuanced communication all the time, so having a quick-but-accurate label allows me to communicate the most important information quickly.

And now, here’s the list of labels:

Conferences like “UniteToFight” that brand themselves as being for “ME/CFS and Long COVID” exclude other conditions (including mine) that are more similar than different. There’s a lot of weird politics going on here where the ME/CFS community built up their own labels (“ME”, “ME/CFS”) and have been doing activism for years, but now that COVID is a huge thing, they’ve started labeling a lot of things (including the conference here) as being about “ME/CFS and Long COVID”, so that they can jump on the “long COVID” bandwagon. Meanwhile, cases like mine don’t even have an official diagnostic name! Imagine being in the nameless minority group of an already-marginalized condition! That’s where I currently am.

Basically, when you name a disease, you either have to use something about the symptom (e.g. hepatitis, scarlet fever), something about the cause (e.g. e coli), or both (e.g. HIV), or use some random dude’s name (e.g. alzheimer’s disease). In this case, since the macro-level causes are numerous (virus, bacteria, fungi, child birth, etc.), and the microscopic causes are not well-understood, we ideally wouldn’t use the cause to name the disease, at least for now. But also the symptoms are too numerous to list! And it’s not clear what dude’s name we should use to name the thing. So my preferred approach is to be honest about how little we know, but still use some aspects of the cause and/or symptoms, in a way that is not very exclusionary to all the different ways people experience the illness. Hence something like “post-something multi-system disease”.