Living with partially or completely invisible illnesses can be an emotional rollercoaster. People are quick to assume everyone not in a chair or without a cane is able-bodied. On one hand, they don’t discriminate against you based on your unseen disability. On the other hand, they don’t give you empathy or the space that you may need to handle your body.
When I take public transport, it has to be a high-energy day. I have been asked to standup so that someone mobile can take my seat. I have been jostled and rushed as everyone around me expects me to move with their momentum. In San Francisco, I was getting off a local bus when my knee subluxed and I fell in the dirty hard space between the bus and the gutter. The doors were still open and no one offered to help. The bus drove away with me on the ground. In Paris, and Europe in general, there are very few subway stations that have working elevators. I have had to carry myself (and whatever groceries/luggage/etc) up two flights of stairs with passersby asking me to hurry up. I have gone out to eat with acquaintances and began sweating buckets on the short walk. They ask if I’m sick and act revolted. These are common experiences living in the world when you look “normal” but your body is alien.
Often, I am happy to hide my physical maladies. If I am out of the house, I put on a smile and attempt to move about my day with as little compromise as possible. I will give up my seat. I will hurry across the street. I will hand carry my groceries and walk through mile long airports. Part of the reason I do these things is my own ego. I don’t want to be considered weak or unproductive. It’s not a healthy thought but I don’t want someone to look at me and think I am pretending or milking my condition for attention. This hyper-vigilance comes from two places. One, I am a woman and that carries a very real threat as well as the need to prove my usefulness. Two, I don’t look broken and have been treated well and valued for my appearance for most of my life. I don’t like what it looks like to be a woman with chronic illnesses.
We have been fed an unrealistic narrative that people should be able to do it all. Have a family, work, health, wealth, and constant progress. Sicknesses we cannot see are just excuses for the lazy, ill adept, and mentally weak. Even as children we are taught to put on a good face for company and only present your best self to the world. The truth is, most of us with stealth conditions battle between perpetual hibernation and pushing ourselves so hard that we break.
I am far from content when it comes to how I deal with this dichotomy. However, over the last five years I have become more at ease with taking my time and speaking up for my body. I still battle the need to please and the desire to make everyone around me comfortable. I rarely bring up my diseases or symptoms in conversation but I no longer hide them.
This is my body, my life, and I don’t owe strangers any explanation for my existence.