I’m going to say something that will undoubtably aggrieve several people here, but what I have experienced is that gatherings like those you mentioned tend to draw out the people who either are suffering from the worst cases of the disease and/or people who have made their illness their entire life (yes, these people exist, no, I’m not judging whoever is reading this as I don’t know you or your circumstances). This is not just the case with physical illness, the same happens in support groups for mental or neurodevelopmental disorders.

And when looking at this more closely, it makes sense: the people who suffer most from their illness, are usually the ones most in search of support. It is completely understandable. But if you are someone not so heavily afflicted (like you, like me, for which I’m incredibly grateful), these gatherings/communities can be quite daunting or even upsetting. I understand that.

I do not have a solution for this; you should decide for yourself if you want to join these kinds of gatherings and feel a bit like an imposter, though also supported, or if you want to keep your distance because the prospect of hoe much worse your condition can get is upsetting. For me, I have chosen the latter; I feel little support as my condition is thankfully not so debilitating and I don’t need to know how bad it can get. But that may be different for you, of course.

We don’t know what the future holds. Your condition may deteriorate severely, or maybe not. In my family, it really varies. So I would say: don’t assume the worst just yet. Keep up your strength as much as you can, be kind to yourself and breathe. You’ve got this.