My 'Invisible' Illness Isn't Actually Invisible

I sat in the doctor’s office while the nurse repeated words like “manage,” “lifelong” and “chronic,” but at just 15 none of it sunk in and I had no idea what all that really meant. I expected to be medicated, sent home with a few days off school and I would feel better in a week or two and my life would go back to normal. Little did I know this was far from the way things were going to be.

Normal is a relative term and suddenly my normal was sleepless nights, needing my younger sister to brush my hair and dress me and needing my friends to carry my school bag off the bus for me. My new normal was being in agony for weeks after one fun-filled weekend of shopping and movies with my friends. My new normal was anything but normal for my peers.

People do not understand the impact rheumatoid arthritis can have on your life. They hear arthritis and assume you have a bit of an ache in your knee and are a hypochondriac. RA is an inflammatory autoimmune disease which affects the joints in your body but also causes chronic fatigue, pain and discomfort and limits your mobility. In other words, it is your own body attacking itself then becoming inflamed in order to heal itself. However, the problem lies in the fact that there were no wounds to heal in the first place.

The pain is one part of the disease that can certainly test you and push you to your breaking point, but it is the lack of true understanding from others that can be the most painful. Rheumatoid arthritis is not something we made up in our heads or something we exaggerate. We smile and say we are fine, and then we cry in agony when no one is looking because we do not want to bring down those around us. So we play a great game of hide-and-seek as we shelter you from the pain we are in.

It is the simple tasks we once took for granted that affect us the most, such as getting out of bed in the morning. I doubt anyone really does this at ease, but now I need to prepare myself as my bones ache and creak as I sit at the edge of the bed. I count to three in my head and take a deep breath, as that is the little routine I have made for myself to ease the pain of the first movements of the day.

Everything is different now. Everything is more difficult, from brushing my teeth to carrying the shopping bags in from the car. The little things people do without a second thought and in mere minutes can be a real struggle for me and, during a flare-up, quite time-consuming.

People don’t see a sick person though; they see a young woman who should be well and able enough to complete these easy tasks. They see someone who is just lazy and can’t be bothered. I may not have a visible disability, but my body does not function as it is supposed to. I have my body, but it is broken.

My illness may seem invisible to the naked eye but really it just takes some time to open your eyes wide and see. You cannot possibly know what every person you encounter on the street is going through and no one could expect you to. But a friend, a colleague or a loved one has the capacity to see what is going on behind our fake smiles and lies of “I’m fine.” You just have to look hard enough, and when you do, my invisible illness suddenly becomes glaringly obvious.

This post originally appeared in Gloria’s local newspaper, The Clare Champion.

Follow this journey on Facebook or The Girl with the Old Lady Bones.

We want to hear your story. Become a Mighty contributor here.