If you’ve ever spoken to me for more than 20 minutes, you know that I have severe rheumatoid arthritis. I I am extremely vocal about this fact because I often run into issues later if I don’t talk about it. Because my RA is something that hinders everyday functions and keeps me from doing certain things but not immediately clear to those around me, RA is considered an invisible disability. From speaking to other people with invisible disabilities, I have found out that a lot of my experiences with it are similar to theirs- specifically the way people without RA react to the disability.
One of the things that happens occasionally is when I can’t perform certain task, I’m silently questioned about it. On one occasion, I was working out at the rec center and decided I wanted to do some lunges with weights. Because my toes can only handle so much movement and my wrists can’t hold too much weight, I grabbed the 5 pound weights and couldn’t go all the way down in the lunge. After doing a couple of them, I looked to my right and noticed that two guys were looking at me. Their faces were ones of confusion, and they kept looking down at my feet. I realized that they had probably been judging the way I did the lunges. I immediately put the weights back and asked my roommate if we could leave. This experience was such a blow to my self-esteem; only a few months before this, I could barely walk, and I had finally gotten to a point where I was able to move almost completely normally. Now when I go to the gym, I just stick to the treadmill and the bike to avoid bad interactions with judgemental strangers.
While I do usually explain my arthritis to people because I want to avoid future problems, there’s still issues that arise from talking about it.
Something that happens frequently when I talk about my arthritis is that people tell me they feel bad for me. While I appreciate the sympathy, can you imagine walking up to someone in a wheelchair and saying “Oh my gosh, I’m so sorry”? Bringing this up is nothing against the friends of mine who have said this to me- I know that you meant well. However, I think that one way to get the idea across that you care about me or someone else with an invisible disability and feel bad is instead saying something along the lines of “Wow, I am so proud of you for fighting this”. Not everyone with an invisible disability will like this, but I can guarantee that it will come across better than “I’m sorry”.
Going along with the last point, people sometimes try to equate their pain to mine because it’s not immediately visible. No offense, but breaking your arm is not at all the same as 24/7 chronic pain. Because I don’t hurt like I did before, this sentiment doesn’t make me as mad as it used to, but when referring to how I was before I was diagnosed, I beg you to not talk to me about all your old sports injuries. The worst physical injury I’ve ever had was a jammed pinky finger so I can’t speak on what tearing your ACL is like, but I think that physically not being able to move any part of your body for two hours after waking up is worse.
One of the worst responses I’ve ever gotten when telling someone about my arthritis is “I would have never known.” I cannot even begin to describe how invalidating this is. While I can usually do a pretty good job of covering up how much pain I might be in, I am constantly aware of my disability at all times. This also sometimes can make me or someone else with an invisible disability feel like their condition isn’t as bad as someone else’s; while that’s definitely true, it’s important to remember that we’re still struggling.
Because I can’t tell someone else’s story, I really only included the things that have personally happened to me. While there are lots of people with invisible disabilities who haven’t had these same exact interactions, there are many more who have had far worse reactions to their condition.