Oh, also, let’s start by validating what we know with certainty!
1) you have intermittent episodes characterized by: fatigue, oral ulcers, and small joint pain (arthralgia)
2) your current lab work demonstrates that there is inflammation happening
Welcome to THE CLUB!!!! Did you know (you probably do) that it can take literal years before an ANA or ENA becomes positive? There are ENAs yet to be discovered…
I think we should call our club:
The Something Autoimmuney Club
Here’s how a pretend conversation with a non-club member might go:
Non-member: What’s your condition?
Autoimmuney: I don’t know, specialists don’t know- my immune system is just borked and makes me feel like something my dog found in the yard and then ate and then puked on the floor and then I stepped on in the middle of the night.
Non-member: But what’s your diagnosis? Haven’t you been tested by, like, a doctor? I have this GREAT naturopath/chiropractor/OB-Gyn/insert-specialist-here you should see!
(At this point, you will want to laugh hysterically while wiping small tears from the corners of your eyes, but you have chronic blepharitis/ocular rosacea and that makes your dry eyes itch more, so you’ll pass on eye rubbing in public)
Autoimmuney: yeah, autoimmune diseases are tricky, there is quite a lot we don’t know and it can take many years before the tests we have are positive or a diagnosis can be made. It’s actually an area that needs a lot of study and research. I have something autoimmuney- and that’s about all we know at this point.
(End scene)
Mary, this was the best laugh I had all day. Keep it up. We are a species that loves to name things. It gives us a sense of control. It lulls us into the idea that we understand something when there is a good chance, we don't. Just keep that in mind when you can't find "you" listed in a book.