His question to me was, “what do you tell people you have when they ask what’s wrong with you?” I responded- I tell them I have uctd, a connective tissue disease, which means, im inn pain. I also have fibromyalgia too, I’m in pain.
Somedays are better than others but I typically only get two good days in a row.
He then replied that’s a mouthful, people don’t know what uctd is, you tested positive for lupus and the ssa was positive too can’t u say you have one of those?
Then I sounded like my doctor. - well I tested positive for both so that’s why I’m in the uctd category because it could stay as that or develop into something.
Husband- people may think that’s fake
Me- then they can watch me walk down the steps. Or try to write, hold a fork…
I usually say I have an auto immune disease. Just means my immune system has turned against itself. Means a lot of pain. That's good enough for most people. If they keep asking, I may decide to explain further or decide not to...its MY choice. One way to regain some control over this :)
I don't know if this is fully on-topic, but thought I would share a word of hope concerning fibromyalgia. There is now conclusive proof that the condition is not "caused" by mental or psychosomatic disorder.
Here are some details on emerging studies of fibromyalgia published recently. This thread of research adds special poignancy to the voices of protest long heard from fibromyalgia patients that "it is NOT all in my head!!!".
Credit for recovery, Suzy Chapman of DxRevisionWatch.com
The following were put out on Co-Cure, on June 19
"Excessive peptidergic sensory innervation of cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for widespread deep tissue pain and fatigue"
I just tell people I have SLE Lupus & am now surprised how many people have heard of it. They ask questions, for though they have heard the name, they r not sure how it affects the body. It opens a wonderful way to share the problem & lack of knowledge about the illness.
Now i have been diagnosed i can say i have lupus. Fibromyalgia. Widespred pain and osteoperosis. But cus when i see anyone its usually cus im having a good day n can get out the house so they say “oh you look well” i still dont think because its not an obvious illness that people understand. I dont want sympathy just understanding that i have a complicated and miss understood condition. Start my hydroxychloroquine next week so hoping to feel better by october. Thats positive thinking.!!!
I'm also surprised that so many people are aware of what Lupus is. For those that don't understand... I explain how their own immune system kicks in when they are sick to make them well, and mine... well, my immune system is on overdrive all the time, and since there are no germs or bacteria to go after, it's attacking my own body.
I'm truly amazed at how understanding some people can be...