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You're Not Untouchable to Chronic Illness

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We always think that the things we hear of will never happen to us. We will never be a statistic. Never going to become chronically ill. Nothing bad will happen to me, because I am not like everyone else. How could that ever possibly happen to me? Thousands of people have it, yet we will always think we can beat the odds.

Did it ever cross my mind that one day very soon I would be unable to function? Not once did I think this would happen. I had never even heard of it. Yet here I am struggling to do the most basic things. With each of these words you read I want you to know it takes me several minutes to figure out how to spell every third one. Even the simple ones, like the word “if” and the word “it.”

I was just a kid and I still am. It is amazing how much can change in the space of three years. One moment perfectly fine, maybe a bit odd, but healthy and able. Then the next struggling to open my eyes and to walk. Each blink and every step is a battle that I must keep fighting.

So here I lay wide awake wondering why this alertness couldn’t have come earlier. The light from my phone making this headache worse, but I must write this. I have an unbearable urge to tell my story.

Have I made you uncomfortable yet, reminding you that you’re not untouchable? The truth is it has been three years for me and I still don’t know what is wrong with me. At first I started showing skin signs of an inner problem with hives on every part of my body. I got very insecure because of them. I can hear people muttering about the massive red welts on my neck, face, arms, or legs. Some say things about how they think I am having an allergic reaction, but others, mostly other teens, don’t care about the cause. They just say I look “disgusting” and “ugly.” They say I am a “freak.”

I remember a time when most of these same teens thought I was beautiful, but it all changes when you get sick permanently. My parents thought I was having an allergic reaction to something in the water or something, so they took me to have an allergy test. Everything came back negative.

So that doctor sent me to a skin doctor and I had to have more tests done. One came back positive showing I have off levels of the thyroid hormone TSH. So they slapped a label on me and put me on a medication that didn’t help.

They said I had hypothyroidism and for the next year and a half nothing got better and everything got worse. The medication didn’t help and I started having the side effects. I tried to get my third doctor to do more tests, but she thought they were pointless. I started having joint problems like hyper extending and locking up.

I lost my friends because they couldn’t handle me not being OK, some think I am a hypochondriac and so did my third and second doctors.
I gained a friend that understands better because she also has a disorder. I was shunned by my church youth group because they think if you are an actual Christian you can’t get sick like this. So I must be a sinner. I must have done something to be “cursed” with this illness.

I just recently went to a specialist. She took me off of my last medication, which is going to give me withdraws and more problems for the next few months. She said I should have had a lot more tests done, instead of having one done, then being stuck with a diagnosis. She thinks I have something called Hashimoto’s. I did some research and found out it is when the thyroid is dying. Scary right? But I will not know for sure in a minimum of about six months. I have had problems for three years and still don’t know what is wrong. I don’t know if I will ever know.

Can you see the people around you that are like me? We hide it well. We look fine. Because of people telling us it is all in our heads. Because of people calling us “ugly.” We don’t speak of the battle inside us. We feel as if no one can understand. We get lonely. Some of us get angry. While others sink deep into depression.

You hear about cancer. You hear about tumors. But have you every heard of Ehlers-Danlos syndrome? Postural orthostatic tachycardia syndrome? Hypothyroidism? Fibromyalgia? Lupus? Maybe you have heard of one of these, or possibly two. These are a few of the possible invisible illnesses that someone you know is fighting every single day. The ones with no cures. The ones no one ever hears about. But if you look you can see the invisible. Because these are not invisible, just hidden.

You can see it behind the fake smile, the leaning against the wall to keep from passing out, the winces of pain when we get touched, the canceled plans, closing our eyes to hide the pain, the single tear we wipe away, the meds we take, the Facebook posts at 4 in the morning because we can’t sleep, not eating certain things, and many more signs. We hide these because when we started having the struggle. We could hear the muttering people. We lost friends. We got called a hypochondriac. Most of us don’t even know what is wrong with us and think we are a hypochondriac.

Are you uncomfortable? Being reminded you are not untouchable. Do you still think you can beat the odds? Are you willing to face the truth? Can you see? We are not invisible. Can you see us? Are you still in denial? The odds of you being like me are very large. We are the hidden warriors, the friend, the teacher, and the person you pass on the street.

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Originally published: June 22, 2017
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