The Pain of Invisibility

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By Mariah Z. Leach—May 23, 2014

Most of you have probably heard the term “invisible illness” used to describe rheumatoid arthritis. This “invisibility” refers to the fact that people with RA can often be dealing with various serious symptoms – such as debilitating pain or crushing fatigue – but show no outward signs of being sick or even being in pain. Although these symptoms may not be obvious to the average observer, a person with an invisible illness may experience severe limits on their daily activities or an overall toll on their quality of life.

Unfortunately, many people make judgments about the capabilities of others based on the way they look. They may see someone who looks healthy park in a handicap spot and immediately assume that their handicap placard is being used illegally, when in reality that person may legitimately be in a lot of pain during their brief walk across the parking lot. Co-workers may not understand why someone who “looks fine” needs to take so many sick days or go to so many doctors appointments. Friends and family may be frustrated that someone with an invisible illness isn’t available for social activities anymore or that they aren’t feeling better yet.

I’ve been thinking quite a lot lately about the “invisible” aspect of life with RA. Considering that we generally “look fine” on the outside, it can be extremely difficult to explain to others what we are really dealing with on the inside. How do you make someone realize how much pain you are in when there are no visual signs of your pain? Is it possible to help someone understand your severe fatigue even if you are able to keep going through your day? Trying to explain what you are going through to someone who does not truly understand life with an invisible illness can feel like a daunting task. And, at least in my experience, my efforts are often unsuccessful. This invisibility and lack of understanding can make people with RA feel very isolated.

This is why I recently found myself feeling strangely grateful when I looked down at my excruciating hands the other day and saw that my fingers were visibly swollen. It’s also why I didn’t mind last week when pain in my toes and ankle forced me to limp when I walked. I felt like I finally had some “proof” that I could show to people who I knew were judging me by my appearance. Like maybe it would help some of them finally understand what I deal with every day.

Please don’t get me wrong – I would never, ever wish for a physical deformity. I am extremely grateful to have access to medications that prevent me from becoming obviously disfigured. And I in no way mean any disrespect to people who live every day with physical disabilities.

All I am trying to do is recognize that sometimes the invisible aspect of life with RA can be particularly difficult to cope with. Have any of you ever felt the same way?

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