“You don’t look sick,” they said. “You look fine. You must be getting old.” I explain and sometimes they still do not understand, but that is one of the struggles of having an invisible disability.
The stigma around invisible disabilities needs to change. Yes, disabilities that are visible and invisible are a great struggle and one is not over the other. However, having an invisible disability comes with it’s own tough circumstances.
You may notice by how tired I am, the handicap parking spot I park in, the compression gloves I wear on my hand sometimes, or my swollen joints. However, what you can’t see is the inflammation in the lining of my joints that will continue to cause joint damage and bone erosion if not treated. You don’t see the sharp throbbing pain I feel everyday throughout my body, or the stiffness in my hands when I type and write with a pencil. You see me covering sports, and walking around campus like everyone else so you assume I’m fine. I’m not listing these factors for pity but for clarity. Pity is the last thing I want. I want to be understood.
I’m sure now you are wondering what my disability is. I have an autoimmune disease called Rheumatoid Arthritis. Rheumatoid is a form of arthritis that has no explained cause other than an overactive immune system. The way this disease works is from having an overactive immune system that attacks the lining of my joints which is called synovium. It most commonly affects my fingers, wrists, knees, shoulders, ankles, elbows, and jaw.
The symptoms include extreme fatigue, swollen and stiffness of my joints, sharp and throbbing pain throughout my body which causes disability. Some days it takes me hours to get ready in the morning, unable to do work or homework, and unable to do many physical activities that my peers participate in.
I have had people stigmatize me in more ways than I can count. I have gotten dirty looks as I am getting out of a handicap parking stall, and made fun of for not being able to go to the gym and run for miles. I have lost friends because I have been too tired to go out for the night, or because I cannot stand on my feet for longer than fifteen minutes.
Some do not get why I take seven different types of medication every morning since I am apparently so “young” or why I receive medication through an IV every month. They don’t understand that these treatments do not just reduce pain but slow down disease progression and save the inflammation in my body from affecting my heart or lungs.
Some people say you look okay so maybe you should change up your diet more, or maybe you are just really out of shape. While maintaining a healthy lifestyle helps the condition, the disability aspect of it is not going to go away.
The point I am trying to make is that people may look normal on the outside but that doesn’t mean they do not struggle. Please be kind when someone says that they are in pain but they look okay. Please try to have empathy and understand that they could be going through something extremely tough physically that you have no idea about.
I would not change my disability because it has made me a stronger person. However, please understand someone you might meet in life could have an invisible disability you do not know about so remember to be kind, and do not jump to conclusions.