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The 3 'Spot On' Analogies I Use to Describe My Life With Rare Disease

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Step 1: The Diagnosis

Imagine having severely bad vision. Trees look like green blurs. Fuzziness impedes upon your ability to distinguish family member’s faces. This would be strange, except it’s all you know. The logical next step is to get glasses. No big deal. But what if glasses don’t exist and most people don’t believe that you have poor eyesight? Then, people start to judge you for being unable to see correctly.

They might also think you are “faking” for attention. People are constantly telling you how they wish they had your bad eyesight so they could get out of certain undesirable obligations — like work and school. When you can’t read the page in front of your face, some doctors say you are just depressed or even faking. The only piece of advice people around you have is to “try harder to see.”

Having a rare and invisible illness is like this. You feel like you have the flu all of the time, except worse. You get used to it though because it’s all you know. Just take some Dayquil and you’ll feel better, right? Impossible, because the treatment for your disease doesn’t exist, and most people don’t believe you are sick. You are judged for not being able to do things that almost everyone else does. It becomes harder to even leave the house for more than a few hours without literally collapsing from exhaustion. Some doctors say you are “just depressed.” Everyone tells you to “try harder to get better.”

Step 2: The Treatment

Now, imagine you have been having car troubles for a while, but chalked it up to having put off a needed oil-change or battery replacement. You aren’t a mechanic and have very little background knowledge of the subject. All of your previous vehicles have never had any trouble.

You go to the local auto shop to assess your car. The tires have the right amount of air and the engine looks fine in all of the mechanic’s tests. Yet, when you try to drive the car, it makes strange noises and appears to die out within a couple hundred yards. You take it back to the mechanic simply to be told, “We don’t know,” or “Everything looks fine,” even though something is very wrong with your car.

Over the next couple of months, you go to various mechanics across town to try and fix your car, but they offer very little insight. With time, they acknowledge that although something is wrong, they do not know what it is. They tell you that maybe the bumpy road or the weather is causing the problem. This is not the case, though.

Again, having a rare, chronic illness is like this. You have been feeling off for a while, but thought it was just a virus, or fatigue from staying up too late. You aren’t a doctor and certainly didn’t go to medical school. And your medical knowledge doesn’t extend far beyond “strep throat.” After all, you have always been exceptionally healthy.

But you go to the doctor just to be on the safe side. Your exam looks fine and most lab work is acceptable. Yet, you still feel sick. The doctor doesn’t have answers, and encourages you to look elsewhere.

Over the next couple of months, you end up visiting many doctors across town to try and help you to feel better, but you get very little meaningful help. With time, they finally acknowledge that something is wrong, but they don’t know what it is. They tell you maybe are dealing with a long-standing case of mono or have poor sleep habits. This is not the case, though.

Step 3: The Support

Now, imagine being put on a non-stop merry-go-round. Each time the carousel makes a lap, you smile and wave cheerfully towards your parents. Except what if your parents suddenly left and you couldn’t get off the ride? My life is kind of like this. Everything was fine until it wasn’t. I am stuck on a merry-go-round, circling and circling with no clear exit or path forward.

I know that I probably will never fully get off of the ride either. I may get a bathroom break or refreshments may get passed around. But I don’t get to leave forever (unless, perhaps, a very smart engineer comes along and fixes the ride, allowing me to safely exit, but that’s a whole separate post).

No, as of right now I am indeed stuck on this very merry-go-round. Circling, ‘round and ‘round with no end in sight.

My world is spinning while everyone else’s remains still and grounded.

With each lap, my desperation to get off and go home where I am safe and sheltered grows exponentially.

So, for now, I wait. I wait with my blurry vision and a broken car, hoping to get off so very soon.

Originally published: February 15, 2019
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