I Was Diagnosed With Ehlers-Danlos Syndrome | The Odyssey Online
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Health and Wellness

I Was Diagnosed With Ehlers-Danlos Syndrome

Living with with an invisible illness comes with struggles.

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I Was Diagnosed With Ehlers-Danlos Syndrome
The Staffing Stream

Recently, with the help of Riley Hospital for Children, I was finally diagnosed with a genetic disease called Ehlers-Danlos Syndrome. Yes, I meant to say "finally," because I have had issues my entire life with no reasonable explanation. And finally, I've been validated. Finally, I can face those people and those demons of my own mind that told me I was exaggerating, and that I am just weak-willed. But I don't write this to explain my illness—I am far from alone. I write this piece to enlighten the general public that isn't used to recognizing an invisible illness or an illness they have no experience with.

I grew up having been close to people with "invisible illnesses," as both of my parents had them. My father had Multiple Sclerosis, an autoimmune disease. He also has two siblings that have M.S. or a similar disease. I never knew my father to be healthy. I can only remember times of him being "less sick" than others. My mother also has both kinds of arthritis, another type of autoimmune disease. According to the geneticist, it is believed my mother also has EDS and passed it on to me. Maybe my family is just a special case, but, somehow, illnesses have a way of bringing together the afflicted.

I don't claim to have the worst luck with my health. I know many people that have the same disease, but a different type, resulting in much more severe and life-crippling complications. There are also many other types of illnesses that are way more severe than mine. But the point is, I've had numerous experiences of my own, of my family members, and what I've heard of from others that the general public seems to be stuck in the confines of their minds as far as what they picture to be someone with a disability. I venture to say that this is yet another manifestation of Americans' troubling inability to see and accept others' differences. We, as a culture, if unable to open our eyes to acknowledging that what we once knew might have changed, will continue to charge straight towards further isolation.

There is the old adage that we fear what we do not understand. That fear, especially when facing an illness, which stands for more than just a mere illness but the idea an illness can creep into our lives in a form we're not familiar with. It corrupts our sense of security and reason of what we once understood. However, after years of people and doctors not listening to my claims, minimizing the pain, and placating me with "it's all in my head," which in itself shows society's failure to recognize the debilitating effects of mental illness, I finally received verification to something I've always felt within myself. Ideally, now that I finally have a diagnosis, people should have compassion and empathy. However, for myself and others, this is rarely the case.

My father, a survivor of Multiple Sclerosis for over 20 years, was one of the strongest men I ever knew—even though his body was failing him. Not many people in today's world could handle the damage that the words of the mindless have done to him. A man of great faith was told not to go up for communion anymore, because his troubled walking would lend people to thinking he was a drunk. That right there is the perfect example of how we, as a community, jump to conclusion based on what we ourselves are familiar with.

My mother suffering from difficult R.A. and O.A., had both of her knees replaced at a considerably early age. I remember in her recovery, she needed to use power carts to help her get around the grocery store. I heard the comments of people saying that being fat isn't an illness, and "Why doesn't she just get up and walk? She could use the exercise." Can we start to recognize a problem here? Where is our humanity? Why has this thick veil of cynicism formed?

I have had instances similar to these. Doctors telling me to be more active, even in the face of blinding pain. My tests came back just fine, so I must be making up my symptoms. I'm just clumsy, and I need to be more careful. I just have bad luck. Bad luck that keeps reoccurring? Friends that have criticized me for my constant aches and pains, calling them a cry for attention or an excuse to not hang out with them. Even the geneticist who diagnosed me told me I could just change my career given my recent diagnosis because I might end up disabled. Like it was my fault for following my own passion in spite of an unforeseeable disorder, instead of society's fault for not being accepting enough to make accommodations for different disabilities. The geneticist also said that I needed to lose weight—which I do, but who doesn't. I then told him that I had been trying, but struggled to do so because of my chronic fatigue and terrible migraines. His reply was, "Well, if you ate nothing, you'd lose weight." Well thank you, doctor, I'd never thought of that, I guess I'll have to try eating nothing!

I joined several Internet communities for people with the same genetic disorder and found I was not alone in my "horror stories," and that even worse situations have happened to others. Recently, there has been an article floating around Facebook about a woman with M.S. who received a note on her windshield asking where her wheelchair was when someone saw her park in a handicap parking spot and was seen walking from her car to the building. We've had to come to terms with our own disabilities... and it's even worse when we have to come to terms that people will never understand us.

And to those that say this isn't an everyday instance, or who think the likelihood of running into someone with an invisible illness is slim to none, here are some statistics released by the American Autoimmune and Related Disease Assoc.

1. NIH estimates up to 23.5 million Americans have an Autoimmune Disease. In comparison, cancer affects up to 9 million and heart disease up to 22 million.

2. Symptoms cross many specialties and can affect all body organs. Hence, why a person may not appear to be "sick."

3. Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.

The rise of autoimmune diseases and advancement in genetic disorder understanding has been the subject of many recent studies and articles. A mere google search would show that.

So what is the moral of the story? Just as all people come in difference shapes and sizes, as do the ailments that affect us. If we as a society do not adjust our judgmental view of what we do not understand, we will find ourselves to become more and more fragmented. Conflict will rise even more than it has and we will ultimately become so hard hearted that the idea of community could no longer exist. So I challenge you, the next time you see something that challenges what you knew to be true—don't immediately dismiss it. Give that person or situation a chance to change your preconceived notions. Don't jump to conclusions about someone, for we are all fighting a battle that the rest of the world is blind to.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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