Invisible Illness Week is nearly over, but the fact that I have one—rheumatoid arthritis—will never change. If my disease continues along the same course that it has over the last 20-plus years, for me it will likely always be invisible. I don’t have noticeable deformities in my hands or any of my other joints. It surprises me a little, considering the intense pain the rheuma-dragon has inflicted on me over the years.
Still, I’m grateful for that. I’m grateful that even though my hands hurt a good deal of the time, and there are times that they don’t work as well as I’d like, they still work well enough that I can manage daily life without much trouble. I’m grateful that my other joints work pretty much like they should in a woman my age, too. I’m not that old, but have definitely reached that amorphous stage in life called “middle age.” A little osteoarthritis at the ends of my fingers, along with the rheuma, isn’t a big surprise. Bursitis in my hips, along with the RA caught me by surprise when it was diagnosed (I thought it was simply RA), but this condition, too, often shows up as the body ages. I may not like it much, but I can accept it.
But having a chronic illness that’s invisible to others (and which I rarely, if ever mention to casual acquaintances, friends or even family members) can be frustrating and sometimes, defeating. It’s not that I want sympathy from them. For me, it’s more like it would be nice if others would acknowledge the fact that I’m handling life so well in spite of the pain and disability rheumatoid arthritis causes.
And I do handle life well. I put a thick leather cover over my car’s steering wheel so I can grasp it more easily and with less pain. Even with the cover, though, I often have to make minor adjustments in direction with the flats of my hands, only gripping when I’m bringing the car to a halt, starting up or making a more serious change in direction.
It sounds like no big deal. But it is to me, especially when I remember that I used to steer my car in the normal way, gripping the wheel constantly, and without needing a wheel-cover to make it thicker and less painful to grasp.
I also handle life well while feeling wiped out most of the time. Pain, even minor pain, uses up a lot of energy. It’s stressful. When the pain is constant, it means that I start each day already behind the power curve. I feel tired—sometimes to the point of exhaustion—for apparently no good reason. At least, that’s how it seems to others, if I happen to mention it. But I rarely do. I just push through it as best I can, doing my best to keep smiling and not complain. That anyone might actually notice my fatigue and ask how they might help me is even more rare.
I think the most frustrating aspect of having invisible rheumatoid arthritis is the embarrassment I feel when I’m disabled and there are others around. There’ve been many times I’ve spent the workday (or the week) limping heavily from a bad flare in my foot. Once in a while someone will ask, “what happened?” out of concern and sympathy. My truthful answer, “I have rheumatoid arthritis and one of my toe joints is flared” leaves them disconcerted and unsure of how to react. After all, I’m not elderly. How could I have arthritis? Really? What in the world is a flare? Your toe hurts? A stupid sore toe is making you walk like you have a broken foot? Sheesh, what a wimp! I bet you’re really just angling for sympathy and attention. Yuck!
People don’t say those things out loud, but I know that’s what they’re thinking. It’s what I would think if I was in their place and knew nothing about RA. My perception is confirmed when they look uncomfortable and change the subject, fast.
And I go along, understanding but humiliated as I see the relief in their eyes.
There have been a few times when a flare in my foot was so bad I could barely walk on it. To help me keep moving and working, the doctor put it in a plaster cast and made me use crutches for a few weeks. What can you say but the truth when someone asks you what happened? I couldn’t lie and say I broke my leg or my foot. Instead, I’d have to say “Well, I have rheumatoid arthritis…” and suffer that miserable humiliation when the subject was changed.
But once in a great while, the person asking would surprise me, saying that they had no idea RA could be so bad it required crutches. They’d be interested in my expanded explanation on what the disease is, how it works, and the trouble it causes in the joints. They’d ask more questions, and as I answered them, their concern and empathy became real. They acknowledged my pain and temporary disability, and then we both moved on. I cannot express clearly enough how relieved I would feel when this happened. It was that rare—and it still is.
In the end, that’s all I want from others regarding my invisible chronic illness. Just an acknowledgement. Not contempt. Not sympathy. I crave empathy, not coddling. It’s just nice to know that someone cares enough to ask—and then cares enough to listen to my answer with an open mind and an attempt to understand.
Well said, and well written. Thank you for speaking so well for so many of us.
when people ask about my limp (which still happens weekly, if not daily), i just say “i have some issues with my ankle.” don’t want to deal with reactions to the truth, or try to explain it.
Sigh. Thx for explaining what so many of us go through.
What to say is puzzling, isn’t it? I was just thinking maybe it’s better to say, “I have an autoimmune disease,” and leave the whole “arthritis” word out of it. Although at this point, I’m not telling anyone who doesn’t already know anything at all!
Wren, wonderful post. Honest and heartfelt. I like your attitude in approaching your RA. Your acceptance without pitying yourself is evident.
As always Wren, you describe RA so perfectly!
Well said, Wren. People are okay dealing with an injury; most of the time, though, they don’t get what it means to live with an incurable illness.
Very well said!
The mechanics are a little for me with PsA instead of RA but the feelings are all the same. Like the others have said, you’ve put words to what I feel.
I have to use a cane on the days when the inflammation in my lower spine pinches the nerve because I don’t when my left leg will give out. I’ve fallen and it’s not fun. People see me with the cane some days, not others. It’s so hard to explain. If I sit too long or have to walk very far, I might fall. So I take the cane in case I need it and so I don’t fall. I see that disturbing look and hear that same “what did you do”. And I too, answer, it’s my PsA, and look away.