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The Truth About Having a Sudden Onset Disability at a Young Age

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Nobody tells you the truth about how hard it is to have a sudden onset disability at a young age. Although my condition is genetic and has always been a part of my body, the effects of it were sudden.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I am now 18 years old. At the age of 14 (my freshman year of high school) I started getting weird pains in my joints. I had never before had any problems. I was active, joining the cross country team and coming from a scouting family. It took me two years to finally get diagnosed. What started as a small pain in my ankle turned out to have effects on my life that I could’ve never foreseen. It didn’t seem like a big deal at first but the pain spread and the answers were still questions.

I was diagnosed with a condition called hypermobile Ehlers-Danlos syndrome (hEDS) and postural orthostatic tachycardia syndrome (POTS). HEDS is a connective tissue disorder. Connective tissue is basically the glue that holds our bodies together. This means my joints are very unstable and extend past the normal range of motion. POTS effects the autonomic nervous system, which is the part of the nervous system that regulates automatically. This affects things such as my heart rate, circulation, and temperature. I live in chronic pain. I live with many more symptoms than mentioned here. These conditions are progressive and often associated with secondary conditions caused by them including mental illness.

Freshman year of high school was supposed to be the start of my journey into the rest of my life. Instead, it’s when everything changed. I could no longer run. Everything I had known was taken away from me. They told me I could never run again, do high impact sports, and all my actions needed to be monitored and modified in order to, well, basically function.

Walking was no longer walking. Each step was a thought. I had constant anxiety about getting injured. Constant stares. I can remember clearly when I was all wrapped up in Ace bandages basically from head to toe like a mummy and people just staring. I eventually upgraded to braces and I would either try to hide them, or would not even wear them, even though they could help me, in order to avoid looks. My little brother is now 14 and a freshman in high school. Now that I see him at that age I realize how young he actually is and that a child should never have to experience that or grow up that fast.

Relationships, whether a significant other or a friend, was also greatly influenced. Many times I’ve had people leave my life because I have “too many problems.” Hearing that over and over again has taken a great toll on me mentally. I now have a great boyfriend, but I still always hear those words in the back of my head and wonder if he can withstand my “natural disaster.”

Doctors tell you the symptoms, but they can never tell you how much it will change your life. They often play it off as something that isn’t a big deal, but it is truly life-changing in so many ways. Medically speaking I feel like I have the body of an 80-year-old woman at the age of 18. Four years ago I never had a worry in the world and now all I do is worry.

I want my old life back. People my age often do not understand that my body can no longer do the things theirs can. Older people sometimes do not believe that someone my age could be so sick. So I’m stuck somewhere in the middle. My whole journey has been a series of people not understanding and not believing me.

Disability is hard for anyone. But when your life is flipped upside down during a time when you’re supposed to be starting your life, it can often feel like you even lose who you are. I have gone through many times where I just cry because the person who I was before is gone. I can remember who I was, but now I’m living a new life. Most people without disability do not understand that. I have grieved over my loss for a long time and still struggle with my identity.

Even my parents expect me to do things that I was able to do before. They don’t understand why sometimes I’m snappy for no reason. I’m now currently in the process of getting a service dog. People think I’m not that bad, but the truth is I just hide it well. That’s the thing with invisible disability — it often feels like my own body is a jail and I have a life sentence.

Disability and chronic illness had taken so much away from me. It was more than just being physically sick. It’s a journey of losing yourself and trying to find yourself again and it seems like a never ending journey of self-acceptance. I just want to let the young people with disability, whether visible or not, know that it’s OK to be sick as long as you don’t let it be who you are, even if you have to relearn who that is. It’s OK to grieve your loss of self of who you were before or what you lost, as long as you grow in new ways. It is hard being sick so just remember to take care of yourself even if no one else believes you. Wear your braces or whatever you need to be healthy and don’t worry about the looks because it’s more important to be healthy. We need to stand up to disability and break the stigmas and educate people so that maybe they won’t be so ignorant. I wish you all extra spoons and gentle zebra hugs.

Thinkstock photo by Pixland

Originally published: April 11, 2017
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