Living with an Autoimmune Disease is Weird

If I’ve gotten nothing else out of this whole autoimmune disease gig, it’s that living with one is fucking weird. I have Undifferentiated Connective Tissue Disease (UCTD). Basically, my immune system is confused and is attacking my connective tissues: joints, skin, tendons, etc. My UCTD could be pre-Lupus, pre-RA, or something else entirely. Right now my rheumatologist is treating it as UCTD with Prednisone and Plaquenil.

Many autoimmune diseases are completely invisible. On the outside, I might not look sick—especially on a good day. With makeup, I can mask the fatigue under my eyes. Unless I’m wearing my wrist braces or using my cane, you might not even notice that I’m in pain. I’ve gotten really good at hiding my discomfort (unless it hits that 8/10 level that I just can’t tolerate).

 

Then there are the completely weird-ass symptoms. My main symptoms are joint pain and fatigue, both of which can be debilitating. Thankfully, my new medications have stopped my current flareup. However, I’ve got the flu again, which has aggravated another symptom which is usually no big deal.

You know how when you’ve got really bad sunburn or a burned yourself while cooking? Or, for those of us with tattoos, that feeling after several layers of color? It’s a raw pain on your skin that is aggravated when you touch it or when something—like your clothing—brushes up against it. I get patches of skin that feel burnt, but nothing is there and I haven’t hurt myself or been out in the sun.

Usually, these “patches” are no big deal; they go away in a couple of hours or a day at the most. They’re often super small areas, too, so it’s easy to avoid irritating them and ignore them. With this flu, though, most of my body feels this way. The flu and illnesses in general tend to aggravate my UCTD, but this is completely new to me. Usually it’s the joint pain that gets out of control. I also find it kind of odd that the Plaquenil isn’t suppressing this.

It’s weird symptoms like this that keep autoimmune patients on our toes.

via GIPHY

As if that’s not all bad enough, most of the time our doctors don’t even know what to do with us. I’ve had physicians suggest I see a psychiatrist, ask me what I want them to do for me, flat out tell me there’s nothing they can do… The list goes on. When you have cancer, you see an oncologist; there’s no such thing as an autoimmune disease specialist, which is a damned shame, because there are a lot of us and very few physicians who can effectively diagnose and treat us.

Thankfully, I wound up with Dr. S, who’s been amazing. If he ever leaves the practice, I’m going with him—even if I have to follow him to the North Pole. It’s that hard to find a good doctor who can roll with the punches of an autoimmune disease; doctors don’t like medical mysteries, because they’re not cut and dry. Hell, I don’t like them either.

Autoimmune diseases are just plain weird, and living with them is weird. Still, I keep on trucking, because I’m too stubborn to lie down and quit. I’m not too stubborn, though, to lie down and rest once in a while.


Do you have a rare disease? What are some weird things about it? Let’s commiserate in the comments below. ♥

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Elizabeth Barone

Elizabeth Barone is an American novelist who writes contemporary romance and suspense starring strong belles who chose a different path. Her debut novel Sade on the Wall was a quarterfinalist in the 2012 Amazon Breakthrough Novel Award contest. She is the author of the South of Forever series and several other books. When not writing, Elizabeth is very busy getting her latest fix of Yankee Candle, spicy Doritos chips, or whatever TV show she’s currently binging. Elizabeth lives in northwestern Connecticut with her husband, a feisty little cat, and too many books.

2 thoughts on “Living with an Autoimmune Disease is Weird”

  1. I have lived with UCTD since 1977. A whole lifetime of pain, avoiding high heels, coffee and over doing the wine. Only now at 54 years old are my peers catching up with me…developing RA, OA and various aches and pains. I want to start campaign in UK to get research into disease and better treatments. Not sure why I don’t start.
    Thanks for sharing

    1. Sometimes I really miss wearing heels!

      Campaigning for research would be awesome, but I’m sure you have a lot on your plate already. Maybe starting a blog would be a great first step.

      Thanks for stopping by!

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