The Unspoken Side of Ehlers-Danlos Syndrome


As a senior in high school and freshman in college (dual enrollment program), who has just recently began to feel the awful effects of my chronic illness, is working a part-time job, active in my church, and so much more, I am doing the best I can. The reality of it all though, is I hurt. Some days, I hurt so bad that between driving from college to high school, or high school to work, I turn on my worship music and I cry. But no matter what, I make it through each and every day and I do it without complaining. No matter how bad I feel, I keep a smile on my face and enjoy the little things in life. But there is so much I do not expose to the people I love, such as:

1. I am scared.

I am scared that I wont be able to have children some day. I am scared that I wont be physically capable of working. I am scared that my boyfriend (even though he is very supportive) will one day become tired of my illness. I am scared that if I tell my family just how bad I am they will think I am attention-seeking or that it’s all in my head. I am scared that one day I wont be able to play my guitar any more or do artwork because my hands are getting worse.

2. My hands, wrists, hips, shoulders, and back cause me agonizing pain. I need braces and I need splints but I am embarrassed and afraid to ask for these things. I am embarrassed that at 17 years old my hips hurt so much that it hurts to walk. I am embarrassed that my hands have lost their grip strength that I once used to have. I need support but I won’t ask.

3. I feel like my boyfriend deserves better than me. I don’t ever want to hold him back.

4. I get anxiety attacks because I have been bottling everything inside.

5. I don’t want the people I love to know I feel this way. I want them to think I am happy and that I am handling everything just fine.

6. Being diagnosed with vascular Ehlers-Danlos syndrome, a very serious type, I am scared to know what my future has in store. But I feel like I can’t tell people this because then they, too, will be afraid.

This is raw emotion. It hurts. But through each and every day I enjoy the little things in life such as sunsets, the beautiful stars at night, the wonderful smell of coffee in the morning, the fall leaves that are finally turning, rainbows after a hard rainfall, rain on a hot day, and so much more, because those things keep me going. No matter how bad I feel, I have to remind myself that my pain is not my fault, but the illness’. I have to remember that my family loves me and that they would do anything for me. I have to embrace my good days and power through the bad ones. I continue to smile and I continue to do the things that make me happy.

Chronic illness is a hard thing to deal with not only physically but emotionally as well. But I am hear to say if you are reading this and you too feel these things, you are not alone. It is easier for me to face every bad day with a smile than it is to sit here and feel bad for myself. For I know I am stronger than I think I am and I can do this. I refuse to sit here and think about the fact that every day is the same. I wake up and pop everything back in place, I struggle to get out of bed and walk to the bathroom and brush my teeth and do my makeup as my legs are wobbling because I have been standing for too long. I put on my clothes and typically subluxate while doing so and move on with my morning. I know that no matter what, every day is the same and I can’t change that or choose how my day goes. But what I can choose is how my attitude about my illness and my life are. And I choose to have the best attitude that I possibly can because I am me. I am not my illness and I will not let my illness put me down or control my life. And I hope that you do not either. Much love to all my zebras out there.

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Lead photo by Thinkstock Images


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