Today I chatted a bit with an online friend about disability, accommodations, and disability identity.1 The discussion reminded me that last week a dear friend left me a message asking if I’d be willing to talk to her friend’s adult daughter who was just diagnosed with lupus.2
I’m happy to talk to any other lupus patient if it’ll help them because it can feel scary. She hasn’t contacted me yet—it’s a big deal to reach out to a stranger—so I thought I’d write something that my friend could share with her. AND, as I said to my friend Midge in that comments chat, it’s necessary to expect reasonable accommodation for a disability, but people’s indifference to a disabled person’s needs is a different beast than simply not knowing or understanding those needs.3
So however many years ago it was, I went to my PCP because my face turned red. I assumed it was something like rosacea. But then my doc—world’s greatest doctor, btw, whose office I can get to without even hitting a stoplight if I cut through a strip mall parking lot, and I can get Taco Bell after my visit in that same parking lot #blessed—he started asking some probing non-face-related questions. Like “do you ever have joint pain?” Hmm, yes, actually. I was starting to wonder if I had arthritis or carpal tunnel syndrome or something because my wrists and fingers would occasionally hurt inexplicably. Fatigue? Check! But I’m a mom to young kids so that’s normal right?4
“You might have lupus,” he said, cueing a DJ disc scratch (in my mind; their on-site DJ was not in that day). He referred me to a rheumatologist, I got a bunch of lab work done, and owing to my “constellation of symptoms” and some suspicious lab numbers, the docs decided it was reasonable to presume I have lupus.
That’s something annoying about lupus diagnosis: it’s not a definitive Thing. It’s more like a process going haywire. Lupus is an immune system disease, where for whatever reason my immune system goes after healthy cells (like skin cells, resulting in the beautifully named facial “butterfly rash” which is frankly a lot nicer than “ruddy barmaid rash”).
For me, my symptoms have largely been managed by the antimalarial drug hydroxychloroquine, which you may know from controversial covid-treatment fame. Hydroxychloroquine functions as a mild immune suppressor. I guess suppressing my immune system makes me a little more susceptible to other illnesses—in the past, I’ve tended to easily develop bronchitis or pneumonia after an upper respiratory infection, for instance—but what with lockdowns and distancing and heightened hand-washing awareness, I’ve hardly been sick with anything the past two years.
My worst lupus flare (not to be confused with lupus flair—which is mostly bedazzled Lupus Warrior patches that I use to decorate my vests) was when Harry underwent a six-hour-long abdominal surgery at 9 months old. A ton of my hair fell out and I had so much shoulder, elbow, wrist and hand pain I couldn’t safely stand and place him in his crib unassisted. A couple of courses of steroids tamped down that flare and thankfully, three years later, my hair is pretty much recovered.
So I’ve learned that stress is the key trigger for my variety of lupus. I am forced to make wise choices about how much extra stuff to take on activity-wise. I prioritize sleep—I try to get at least 8 hours a night, but I could regularly sleep for 9 if it were possible.
Fortunately, the hydroxychloroquine and extra strength Tylenol are typically all I need to manage the condition. Once I had a case of pleurisy, a fun old-timey sounding name for “yer lung membrane done got irritated,” but that was also cured with a course of steroids.
One unusual thing: a while back my prescription got messed up and I went for several weeks without the hydroxychloroquine. And not only did the joint pain return, but some arthritis I have in my lower back (yes, I am falling apart) got really painful. So I guess the anti-inflammatory properties of the hydroxychloroquine are helping manage my osteoarthritis? My doc was like: hm that’s weird but cool.
I think the hardest part about dealing with lupus is the fact that it’s not obvious. Consequently, when I have a flare I’m forced to announce it to my friends and family so they know I’m being bitchy because I’m in pain, not because of anything they’ve done. Conveniently, I can now be a bitch whenever I want and then blame it on lupus after the fact. Like I said, #blessed.
Edited to add: I forgot (ha!) I sometimes have Lupus Fog, a neurological symptom that makes concentrating and remembering things difficult. More than once I’ve shown up for doctor appointments on a wrong day or just flat out forgot stuff, which isn’t typical for past me. I lean heavily on my iPhone calendar and reminders.
In the comments section on FdB’s blog about a video game, of all things.
I was diagnosed about seven-ish years ago, maybe? I dunno, it was before getting pregnant with Harry, and he just turned 4.
I wouldn’t consider lupus a disability in my case (it is a chronic disease, but its severity ebbs and flows) but it’s important to share your needs from chronic disease or neurodiversity or disability (visible or invisible) with friends, family and coworkers in order to expect accommodation. You can’t blame someone for something they don’t know. Well, you can, but you ought not. Should, maybe, but shorn’t.
This reminds me of the time my obstetrician was like “WHOA we’re going to give you an iron supplement and you’ll start feeling a lot better” after I gave birth to Oliver. I didn’t realize I was feeling super bad: the crushing fatigue and weakness was not normal, apparently. I thought I was just tired. But no! Anemic!
Thank you for sharing, Erin. As always your fun, insightful, and beautifully written piece encouraged me.
I have fibromyalgia, and have a whacked out immune system with no specific diagnosis. For example, I had Juvenile Reactive Arthritis as a kid (my body reacted as it would if I had arthritis, but it did not destroy the joints the same way), I had mono 5 times because my system wouldn’t create antibodies to it, and many other fun autoimmune symptoms.
I think the hardest part for me is the unpredictability. I can go to bed feeling pretty ok, and wake up barely able to get out of bed. It’s very disruptive.
I hope your meds and self care continue to help keep your lupus flares in check.
P.S. I’d like to see pictures of your vests with flair!
A informative and funny post that told me so much more about Lupus then I ever knew for which I am grateful