When the Disability Becomes Visible
Rheumatoid arthritis is commonly referred to as an “invisible disability.” Even though those of us who have the disease may be experiencing high levels of pain, inflammation and fatigue, other people around us may have no idea that we’re suffering. There are times when the only signs of physical distress that would be observed by someone without a medical background is the pallor of my face and strained look in my eye. Obviously someone would have to be very attentive and observant to pick up on these subtle signs of the pain I am in.
At times, this can be a blessing. When acquaintances, coworkers, or strangers working in stores or restaurants ask how I’m doing, it can be nice to have the choice to keep my private struggles just that, private. All too often well-intentioned people don’t realize they’re putting their foot in their mouth when they react with pity (“Oh you poor thing.”), incredulity (“But you’re so young!”), or lack of understanding (“Yeah, I’ve got arthritis in my knee from a football injury.”). On a few occasions I’ve even had people diminish my experience by saying, “At least it’s not cancer.” Therefore, there are times when I’m glad to have the option of replying to, “How are you?” with the little white lie, “I’m fine.”
That being said, having an invisible disability can make the burdens I carry seem even heavier by other people completely ignoring them. Since I may look fine on the outside, people may not understand why I have to break plans (or not even commit to plans in the first place), shy away from volunteering for things that I would love to do if not for my health problems, or why I may be a little less patient or more irritable. They don’t know the pain that I’m experiencing, and even if I try to explain it to others, only the most compassionate people seem to understand that I can simultaneously look fine and feel awful.
Then I have those times when my disease activity is so high that it makes my condition visible. Sometimes this happens when my elbows or wrists are so inflamed that I have to wear supports or splints to brace them. Literally wearing my RA on my sleeve, people then notice that something’s wrong. Likewise, if my feet, knees or hips are so painful that they cause me to limp, my arthritis gets attention that it usually doesn’t garner. While in some ways it is a relief for others to know that I am contending with pain, in other ways it adds awkwardness to situations.
For instance, last week my hip was in so much pain that I had to walk with a slight limp. As I walked up and down the gigantic staircase in the high school where I work, taking the steps one at a time with both feet on the same step before attempting the next one, I felt like Sisyphus in the Greek underworld, endlessly pushing a giant boulder up a mountain. That attracted attention, and a couple of coworkers asked what was the matter. Then as I was walking with a colleague to a classroom, he started bounding down the steps. When he turned around and saw that I was several steps behind him, he asked what was wrong. I explained that I have rheumatoid arthritis, and he said, “Oh, I have that in my elbow from tennis.” I briefly explained that it’s different because it’s an autoimmune condition that can affect all the joints in my body. He’s a really nice guy, so he asked me a few more questions. While I appreciated his concern, I really didn’t want to be talking about my RA; I wanted to discuss the work matter at hand that we were on our way to address.
At the end of the day I was in so much pain that my husband suggested that I should be using my cane. I’ve never used it at work. If I’m in bad enough shape to need the cane, then I’ve stayed home from work. Luckily my need for it is rare enough that I have that option. I was horrified at my husband’s suggestion, and responded, “But then everyone will know.” He countered that it would be a good thing if people did know, so they would be aware of what I am contending with. Tears started slipping from my eyes as I explained to him that in many ways I feel like I am trying to prove myself on a daily basis, and that I feel like it would be that much harder to do so with the preconceptions that some people make about those with visible disabilities. The ugly reality is that for some people, a wheelchair, brace, or cane connotes weakness and incompetence. That’s a false perception, but some people have it nonetheless. Last year I had to invoke my rights under the Americans with Disabilities Act, something I’d never had to do before. However, this particular work environment has not always been supportive of my needs, and I worry that using a cane at work would involve more emotional “cons” than physical “pros.”
I realize how lucky I am that this is a decision I still get to make. There may come a time when I just can’t get by without a cane. The fact is that you just can’t win when you’re a young person with a degenerative disease. When it’s invisible I often feel alone or misunderstood. When it’s visible I sometimes feel judged. The truth is, it’s hard to have an invisible disability, and it’s hard to have a visible disability, because simply stated, it’s hard to have a disability. Period.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?