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.
Also, with not having a formal diagnosis its so much harder to explain to folk what is going on.
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
these points of yours especially hit home for me.
1. i remember my mom having "arthritis" from the time she was in her 30s. the doctors never dx'ed it past that. had her believing it was OA (until now that i'm dx'ed, now she understands that its spondy, and now things make a lot more sense for her as well). but since nsaids kind of worked for her, she just sucked it up and took the nsaids til her stomach hurt too much, then stopped til her arthritis hurt too bad, then back and forth. finally she was put on celebrex, but even that gave her an ulcer; cox2 inhibitors inflame my stomach too.
its only now that i'm dx'ed, and last summer talking to my aunt about what's going on with me. and she shakes her head knowingly in agreement and tells me more about the "family arthritis" then mom ever has. also found out from my aunt about how cirrhosis of the liver runs in the family.
mom just doesn't like to talk about heath issues. anything "unpleasant" just shouldn't be talked about. we need to only think happy thoughts. but to me, its more about sharing information, so that we can do something about it. knowledge is power. its taken a long time to get the knowledge. likewise it took many years to learn that my aunt died from a bleeding ulcer, my great grandfather died from stomach cancer, and almost all my relatives on my mom's side have had an ulcer at some point in their lives. i think my gastritis causing so much pain is a blessing in that it has so far prevented me from getting an ulcer as i can treat it before it ever gets to that point.
2. have to agree with your second point. it has been a lot easier in explaining and having people understand and believe me once i had a dx and understood myself what was going on.
3. love the term "military exercise"! when i travel, half my suitcase is for the usual stuff everyone else brings (clothes, toiletries, etc) and the other half is medically related (my feather pillow for my neck, ice packs, heating pad, drugs and supplements, flector patches, blue icy gel, etc etc) even driving anywhere around town to do errands and i have to pack a cooler full of ice packs for sitting in the car. going to the acupuncturist, dentist, imaging, etc or if my husband drives me, and i have to also take my "bag o pillows" (i just now have a bag in the closet with all the various pillows i need and my neck thing to lay on, so i can just grab it and go. and then i gotta take food so my gastritis doesn't flare. every time i leave the house, it looks like i'm going on a weekend getaway! LOL! "military exercise" thanks for that phrase!
