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You Have to See It to Believe It: Navigating Life with an Invisible Illness

Of all the words in the English language, one of the most central in defining my life is “invisible.” Obviously, this does not pertain to my physical appearance as a brown girl with a constantly changing hair color at a majority white school. No, I have an invisible chronic illness.

I am officially diagnosed with Ehlers-Danlos Syndrome: Hypermobility (Type 3). It is a connective tissue disorder in which the body produces defective collagen, which is found in cartilage, tendons, hair and skin. For me, this means my skin is too elastic to properly heal and hold itself together when injured, causing me to scar easily. It also means that my cartilage is too weak to support my body. If I do too many physically demanding activities, the cartilage in my joints starts to compress and put pressure on my bones, causing a lot of pain. Also, as the name of the subtype indicates, the weak cartilage makes my joints extremely flexible and prone to dislocation and subluxation.

Basically, my joints pop out of place and hurt all the time. There is no treatment except to avoid physical activity.

I had known something was wrong with my body my entire life, I just didn’t know there was a word for it. As a child, I played a lot of sports but would always dread going to practice just thinking about the pain and exhaustion I would experience afterward. My mother and sister are both extremely athletic, so I began to think something was wrong with me not physically, but as a human. My mom was so proud of all my sister’s athletic achievements. Why was I not like her? Why couldn’t I be like her even though I tried? Instead I began to focus on art and music, further separating myself from the similar interests that my mother and sister shared. I began to feel alienated.

Years later, when I was officially diagnosed by one of the few specialists on my disorder, it was pure relief. There was a reason I was in pain. I was not just making this up. There was a name for this. It was not my fault.

After my diagnosis, I started doing research on the Internet, looking for other people who were going through the same thing, and I discovered that there are numerous invisible illnesses. An invisible illness is one where the person who is sick does not physically appear sick, unlike with visible illnesses such as cancer or Parkinson’s Disease. I scrambled to soak up all the information I could when I stumbled across “the spoon theory.”

Created by Christine Miserandino, the spoon theory doesn’t actually have anything to do with spoons; the name was coined by the nearest available object Miserandino could use to demonstrate her theory. The idea is that each time you perform a certain task, you take a “spoon” away. People with chronic illnesses start each day with a set amount of spoons, while able-bodied people have an unlimited number. So living with an illness means that if you don’t plan accordingly throughout the day for what is coming, you risk running out of spoons, or rather running out of energy and the ability to perform tasks.

Let’s say I start my day with ten spoons. I shower: one spoon. My backpack is heavy because I need to bring my textbooks to school: one spoon. I have to stand on the train ride to school because no seats are open: two spoons. The elevators are busy, so I walk to the third floor: one spoon. I return film equipment from the set I was on this weekend: three spoons. I have a test in class that involves writing an essay: one spoon. I now have one spoon left. I have two options: I can get a Lyft home (because walking up the hill to my house costs one spoon) and cook dinner or I can buy dinner (cooking would involve me standing and watching the food) and take the train home. Either way I am spending money that others wouldn’t have to—and my last remaining spoon.

Many people falsely assume I am completely able-bodied. I constantly face a conflict between what I want to do and what I am able to do. Whether or not I tell people about my disorder, I am still faced with sentences like “It’s not that far, why can’t we just walk?” or “It’s really not that heavy, why can’t you grab it?” They think that I don’t look sick, but as I get towards the end of my spoons, pressure builds on my joints which slowly morphs from a dull ache to a sharp pain. I feel it creep from my feet and it slowly progresses up my back and into my neck. When my body is starting to reach it’s limit, it starts to shut down and I get tired. I start to yawn. Usually at this point, I know I won’t be able to walk the next day. If I were to push myself, I would get physically sick and puke.

It’s hard to find a balance when you feel like you are limited in what you can do with your friends. I can’t always go out to places with them because I know I will need energy for something else. I feel like a burden if I ask if we can take the train or bus instead of walking. I used to think that I was just defective as a person because I wasn’t able to do things other kids did. Even now, I have yet to meet someone else with the same illness as me. Ehlers-Danlos Syndrome, however, is not the only invisible illness out there. There are plenty that are much more common such as fibromyalgia, arthritis and lupus. Fighting the stigma of “Oh, but you don’t look sick!” is necessary in improving our society's ability to provide properly for everyone. Now I know that I’m not the only one experiencing this problem and I hope that, one step at a time, we can acknowledge how invisible illnesses are just as real and valid as visible ones.

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