There is a rift in the ME/CFS community. And as tempting as it is to get into the details and vent about it, I’m not going to because I don’t want to deepen the divide. Though if you’re reading this, you probably already know about it or can easily figure it out.
The thing about these types of internal conflicts is that although they’re unpleasant, they’re also indicative of the broader state of the community. We are frustrated and angry, and when no one else will hear us, we sometimes take it out on each other. The frustration shows on our faces, creeping out from within us, pulsing through our fingers as we type out our thoughts.
In many ways, this frustration is counterproductive, but it may also be part of the advocacy process, however unfortunately. It reminds me of a scene in How to Survive a Plague, an Oscar-nominated documentary about the HIV/AIDS crisis. The scene showed a room full of passionate HIV/AIDS activists, many literally dying from the disease, screaming at each other. I don’t remember exactly what they were arguing about, but I suppose that makes a larger point. The collective frustrations in a group are more memorable than any one particular issue that is disagreed upon. Five years from now, heck even in a few months, most of us won’t remember what this latest conflict within the ME/CFS community was about. But it’s almost certain that we will still be frustrated, still angry that we’re sick, still pissed that we’re struggling to get the resources we need.
I suppose this is indicative of something else too. We may disagree on certain things, various issues that may or may not eventually fade to the recesses of our minds, but in truth, we agree on far more things and far bigger things than we disagree on. And ultimately we all agree on the most important thing: the need for a cure. In the disagreements that I’ve had with other patients in the ME/CFS community over the years, I’ve never disagreed with anyone on the fact that our illness needs more research funding and more treatments. These basic needs will never be disagreed upon within the community, and it is especially important to remind ourselves of that when things get heated.
We all have the same goal, some of us just have different ideas about how to get there, and some of us cope with our frustrations in different ways, some unproductive ways. I’ve been guilty of this at times, publicly venting about the egregious fees that doctors charge or verbally sparring with other patients about the best way to advocate for our cause. So I don’t take it personally when someone else does these things, even if to a greater extent. I do, however, wish to quickly get back to a more harmonious effort, a unified chorus that should always prevail, one that can serve to heal any internal fractures.
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