Support group

This is disappointing me. I'm on a TTP support group on Facebook, and in the past it's been really good for sharing stories and making me feel like I'm not completely missing something from my basic make up when I can't remember things or my brain stops working. When I'm so tired that getting out of bed is an achievement. When people can sympathise because I can count eight bruises I did not come by normally.

But lately … okay, first off, my doctor said at the fundraiser event I went to last month that a lot of research into TTP coming out of America, if not from two or three key hospitals or based on her own research, was unlikely to actually be based on TTP. They diagnose HUS as TTP (or TTP-HUS) just to be sure of saving a patient, although HUS is nowhere near as bad as TTP. It's still horrible, and a good precaution. But it's not the same thing.

Anyway, so knowing that, someone mentioned something about genealogy, and I mentioned that, as far as research has gone so far, there was no genetic predisposition to TTP, but there might be some basic haematological fault in the genes that manifests. That's what they know so far. I know my doctor is investing in a machine that will explore if there could be something hereditary, but these things take years, so for now, I'll go with the official line. And I got chewed out. Like the person was presuming I knew nothing about my illness and I had it a thousand years ago and how dare I not keep up with current methods? I felt like throwing the above paragraph in her face. There's 670 members on there, and although a lot of them are relatives of patients, there's no way they're all TTP patients. That's like, double the average amount of Brits who suffer from it, survivors or no.

That made me disheartened enough, but now a bunch of people are demanding the group go private. This came up some months ago, and there's already a few private groups out there for TTP, and the beauty of this page is that other people can go on it and see that I'm not completely off my gourd when I say I'm tired when I've had eight hours sleep, or when I say I can't understand something simple. But there we go, people are saying they don't want to promote the illness anymore. It's like, if you don't want it showing up on your news feed, why not select the options for who sees it? I feel like I'm arguing to save something huge, but it's falling on deaf ears. I just said - and it sounds callous but there we go - that I'll leave the group if it goes private. I will. I want people to know the devastation their own bodies are capable of, I want them to know the warning signs for themselves, and the after effects for those of us fortunate enough to survive and try to make life worthwhile again. I have not worked my ass off every day for the last six years to feel like I'm being silenced, like all that expended effort was irrelevant, in the end.

I hate feeling like that. Who walks away from their support network? Who says that they need to cut ties because the understanding has gone? But then, who seems so stalwart that they won't consider much of an alternative until they get their way?

I guess, silver lining time, my doctor said she'd forward me the email of a woman who has done huge things in TTP over here, so I can do more fundraisers that are relevant to TTP, rather than the general hospital charities. We talked about the website connected with the hospital and the charity too, and what I thought about that. I guess this is a one-door-closing-as-another-opens sort of thing, isn't it?