This thread has brought up a whole lot of issues for me: I think some of my family members with autoimmune problems have done others of us a disservice by not acknowledging them themselves - I include mum in this, as until very recently I really didn't have much idea at all of what her problems really were, and now I find when we are talking much more that she was going through all the same kind of stuff as me many years ago. had I known then, I certainly would have considered seeing doctors much earlier, which might have helped get a formal diagnosis, instead of just sucking it up.
The fluctuations of level of disability and problems is also a big issue. I cope pretty well at work, so few people in our community really realise how much pain and disability I have, even though they see me walking with crutches. I often have to cancel out of social activity or going to community events because work just wipes me out so much, but I don't think most folk recognise that is the reason.
Also, with not having a formal diagnosis its so much harder to explain to folk what is going on. I like the idea of talking about the unpredictability of it all - that sometimes it knocks me right out, and other times I can just get on with stuff. Also having a way of describing it other than using any kind of arthritis terminology (for example calling it a disease that attacks the spine causing major inflammation, pain, and ultimately fusing, rather than just spinal arthritis). Also talking about treatments being on a par (in seriousness) with things like cancer (having to take cancer drugs like MTX to keep the immune system under control), or having to take far more than routine painkillers to keep functioning.
The comments about planning vs just winging it - that really hits home too in that I used to be able to just grab my backpack and take off travelling using public transport and staying in hostels. Now its a military exercise to make sure I will be able to take appropriate breaks, accessible bathrooms, help with luggage, etc.
There always will be folk who dont understand or don't want to understand, my sister being a classic, so I suppose the only way to deal with it is to just not let what they say affect me. I got told once by a therapist "you always have a choice, even in extremely difficult situations and even if the only choice is whether you react or choose not to react". That is so true. Choosing not to react can sometimes be the most powerful choice out there.
