One Teenager’s Response to Living With an Invisible Illness

One Teenager’s Response to Living With A Chronic Illness

My teenage daughter was asked to write a narration with a moral for her comp class this year. She is a senior. She chose to write not only about her fight to help others understand what EDS is and how it affects her everyday life but how she is not going to let her illness ruin it.

(She is definitely her momma’s girl.)

This is her paper in it’s entirety with links added to empower others with useful knowledge.

Do Not Be Ignorant

Once upon a time, in a not so far away land, lived a dark haired maiden. She was your average, all around, American girl, but behind all of that was a different person that no one ever saw besides her family. Until one day, she could not hide anymore. She had to show herself to the world, not knowing how people would react to seeing her in the not so beautiful reality. This is my story asking people not to judge me until they come to know me and my life.

Braces, slings, and casts, when people hear these words they cringe but to me this is a part of my everyday life. I was born with a collagen disorder called Ehlers Danlos Syndrome Type 3, or EDS for short. There are many different types of EDS and I have the hyper-mobility type which causes frequent dislocations and sublaxations. It is an invisible illness and hard to detect until your body starts falling apart. Thirty percent of your body is made of collagen including muscles and organs. When mine finally, really, started to act up, I had no choice but to start wearing braces to stabilize my feet and wrists. I no longer had a choice, it was time to tell the truth.

I stepped out of my house, ready to brave the world. When I got to school that day, people stared and stared, I could hear them whispering awful things about me. When I tried to explain my problems for the first time everyone called me a liar and a faker. As I made my way through school that day I felt very awkward. I could not understand why no one believed me, not even my friends. After I received a ride home from school that night I cried. My mother asked me what was wrong and why I was so upset. I explained to her what had happened and she said, “There are always going to be ignorant and mean people in the world” and “that it was a fact of life.”

One month later, my friends were getting used to me wearing braces and were starting to actually believe me after I told them to look up Hypermobility Ehlers Danlos Syndrome and realized that I was telling the truth. Soon my teachers started to realize that I was not faking it but the school nurse was still very skeptical and starting to get on my nerves. I was really getting sick of people calling me a faker and a liar but I realized that their opinions did not matter. My friends and I were so excited for the upcoming homecoming dance and they all wanted to know whether I wanted to go to the homecoming dance with my big, chunky, ugly, black boots that my orthopedic specialist gave me to wear. Since I was not going to be able to dance, my friends were worried that I would not have fun, but I was sure I would.

Then, came the homecoming dance. I was so excited! I spent all day getting ready for the dance. My mother curled my long black hair with spiky blue rollers and did my make-up and nails in a sophisticated manner. I was having fun getting ready with my grandmother, aunt, sister, and mother there to watch me and share the excitement. Finally, it was time to put on my sparkly, black homecoming dress. It looked great! My mother told me that I had to get pictures with everybody so I got all my pictures taken with my family members and then it was time to go. As I walked into the dance I was so excited! I was not going to let the fact that I could not dance get me down. Later, I realized that just because I could not dance did not mean I could not stand for small amounts of time and move my upper body to the music. So, I did. This caused even more conflict because I was “dancing” which meant I was faking my foot injury but I really did not care what people were saying about me because I was having fun and nothing was going to make me feel bad.

In the years following this event, I have still had people tell me that I am a faker and a liar but I no longer care because I have learned that what I think of myself is more important than what others think of me. People should realize that judging others before you get to know them can make people feel bad about themselves. I hope that by reading my story people will no longer judge me or others just because they are different.

You can read a follow-up story Rebecca shared here.

What is your teenager’s response?

Feel free to like, share or pin this story if you know someone it would help or would be willing to share it for others to be encouraged.

Feel free to leave encouraging comments below, she was very unsure about sharing something so personal at school, let alone on my blog for the publi too see.

If you you would like to share a story about your child or yourself please send an email to TheZippyZebra@outllook.com. We would love to hear from you.

Thank you and we hope we brightened someone’s day.

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Tags: Ehlers Danlos Syndrome, Homecomming and EDS, Hypermobility, Invisible Illness, My struggle with EDS, Teen, Teenager, Teens with EDS

Helping Your Unusual Child, Inspiration, My Family's Personal Stories, Real Life Stories | TinaMiller | October 13, 2014 10:17 pm

10 Comments

By Liz, October 14, 2014 @ 7:58 am

that was great. I understand totally because that was me growing up in high school. Loved it.
By Val Tower, October 14, 2014 @ 3:31 pm

Thank you for your article.This is my daughter’s life story as well. It I was heartbreaking to hear people talking about her the same ways, yet my daughter also stood strong and never let it stop her. She proudly played drums in the band,braces and all!
By TinaMiller, October 14, 2014 @ 5:13 pm

Thank you Val. My daughter played the flute until last year when the hand pain became too unbearable. The new rheumy pointed out the x-rays show that her outside are bone on both hands is about a half an inch too short. The flute plus EDS put undo strain on that area so she gave up the flute but she sings and had the most beautiful voice. I am so glad it could help someone. I have been very nervous about posting personal stuff but when I read her paper I couldn’t resist.
By Jennifer, October 14, 2014 @ 4:31 pm

That is an awesome paper. Very well written. I have a 21 yr old daughter who had a very difficult time in high school and still struggles to find strength when her friends, strangers, & mostly some of her family doubt her illness. I hope & pray someday that she will. Thank you for the paper.
By TinaMiller, October 14, 2014 @ 5:16 pm

Jennifer, I have spoken to some EDSers your daughters age and I believe a FB support page is going to be set up specifically for EDSers in the 13-18 and another for the 18-25 age group. Perhaps she could join and talk to others her age. 🙂 Thank you for commenting it makes my daughter feel good and as we know we need all the encouragement we can get some days.
By TinaMiller, October 14, 2014 @ 5:19 pm

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