As a society, we assume many things based on a person's appearance. As a society, we also assume others are healthy, happy, and loved because we don't get to experience another person's problems. However, often times that assumption is wrong. People have all these little quirks inside of them that are invisible. We can't assume that a person a person is happy. We bury things deep inside to hide from people. We also can't assume that someone is healthy. 96% of chronic illnesses are hidden or "invisible." A person can look entirely normal on the outside meanwhile their body inside is attacking itself.
About three years ago, while I was volunteering at an adult/elderly care facility a woman who was also helping out (she was probably in her 60s or so) had struck up a conversation with me as we were walking to down the empty hallway to get some supplies from the closet. She proceeded to tell me how this will be a very rewarding experience. I had quietly agreed with her as I was too shy to strike up a real conversation. As she continued she told me, "This will show you how thankful we should be that we can eat, drink, walk, run, talk, and care for ourselves." I replied, "Yes, Ma'am." However, I thought to myself how many of those things I was unable to do without help or maybe even at all. What that woman didn't know what that a PICC line and feeding tube was hidden beneath the sweater I wore during the cold October evening.
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It was hard to know she was unable to see how much I have struggled to simply live. I wanted to scream and shout at her, but she didn't know. There was no way for her to possibly know what a struggle life has been. I wanted her to know, but I stayed silent. Thinking back to that moment, I wonder how I would respond today. I am much more vocal about my disease now than I was three years ago. I would like to think that I would try to explain to her how many of those tasks she listed are not so easy for me. I take too many pills to count. I have a central line leading directly to my heart which can't get wet making showers complicated. I receive TPN also known as IV nutrition through my central line which is where most of my nutrition comes from because I am unable to eat. Running and walking hurts my joints. There are days I am too weak to get out of bed much less walk or run a mile.
Sometimes I wish I could just scream and shout at those people who don't believe I am sick. Apparently, I do a great job hiding the daily pain I wear behind my eyes with that smile I proudly wear. It's impossible for those people to see the damage that lays within. Before most people meet me they believe I am healthy, but sadly that's just not the case. I receive these labels such as "normal," "healthy," and "typical teenager" all because of my outward appearance. I'm supposed to be the stereotypical teenager who wakes up every morning and heads to school, the teenager who stays awake till two in the morning doing the most ridiculous things, and the teenager who thinks she can take on the world and is completely invincible, but I'm not. I'm the teenager who wakes up in the morning and goes to the hospital, the teenager who has learned more than once that one missed little detail can kill you in an instant, I'm the teenager who goes to bed at eight in the evening because she's too exhausted from fighting her own body, and the teenager who is trying to play her cards the best way she can with the hand she's been dealt.
It's not easy for anyone to be judged by social standards and expectations we have come to assume in our everyday life. I don't think most people look deeper beyond the outward appearance of others before they choose to judge them. They world always say to never judge a book by its cover, but I find that to be impossible with society's human nature. Society chooses to look at other people for their stereotypes but if we would sit down and try to understand other's lives, that's when the tables will turn. I don't want to be known for my disease but I also don't want people to diminish it and pretend as if it doesn't exist because it does carry a huge aspect of my life. Mitochondrial Disease and my other diagnoses can be very hard to live with. I believe people need to be aware that just because I don't look sick doesn't mean I don't constantly struggle with my invisible illness.
Often those with invisible illnesses hear others tell them how great they are doing and that we must be feeling, but all of those with invisible illnesses have a moment when they want to shout and break through the silence to tell others the ugly truth about how their illness affects themselves. I ask today you go out into the world and try your hardest not to assume or judge another person based on stereotypes. It is hard not to pass judgment but if you try it, then one day you might just realize the truth about what another person has struggled with throughout their life.
