I went many years trying to hide my illness. I didn’t want to appear like I was complaining or exaggerating (which I think is very common particularly for young sick women who are often dismissed as “faking” symptoms), and I didn’t want it to define me. I wanted people to remember me for my work, my art, not as “the sick girl”.
But I did myself a disservice by doing this. Illness is a part of me. It has shifted my priorities and dictated my time. I would spend however long my body allowed me to “act normal” and then I would go home and collapse. I would have to recover from doing normal things. I had to schedule my time so wisely.
No one knew in my college classes that being there that day meant I would not be able to cook dinner that night. That the energy I expended on learning and working those couple of hours would mean I’d spend the next day holed up in a dark bedroom waiting for a migraine or some other unbearable pain to lessen. I had to plan my days around tasks like showering (if I did that before class I might faint while standing waiting for the bus, so I’d try to shower the night before, etc etc etc…. endless planning of things most people don’t even think about. #spoontheory)
Looking back, I wish I had shared more with my friends, family, professors, etc. Perhaps if they were open to learning about chronic illness, I could’ve helped spread some empathy. They would’ve been a little more understanding of the next person they met. Perhaps they would consider that just because someone doesn’t LOOK sick, doesn’t mean they aren’t. They would know that despite what popular movies and books portray, illness does not end in only death or miracles. Sometimes you get sick and just stay sick and that is your new reality.
I no longer want to hide my illness. Years of misdiagnosis meant years of extreme suffering. But I am finally beginning to heal and want to share all parts of myself and my art, not just the pretty end products! There is so much more to come!!
Thanks for reading,
xJenna