To the School Staff Who Dismissed My Ehlers-Danlos Syndrome

Just because you cannot see my disability does not mean it isn’t there. About four weeks ago I was diagnosed with hypermobile Ehlers-Danlos syndrome. My family and I informed the school nurse and staff, even turning in documentation from my specialist. Despite all the evidence given, my school still does not seem to believe me.

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

My thumb dislocated last week in math class. When I informed the teachers, they said, “OK.” 10 minutes later, when I saw nothing being done, I asked for ice and if the nurse could be called. They brought me ice and proceeded to ignore me. I decided to talk to my friends. They were sitting with me when the dislocation happened and saw as my thumb started to bruise, turn red and swell up. At break I texted my dad to let him know my thumb had dislocated. Normally my joints just sublux, so I knew it was important to let my parents know.

 

30 minutes later I was informed that the nurse said I was fine and I just needed to “stop playing with my fingers,” then proceeded to be sent to the back room. I still do not understand how she knew I was “fine” without ever seeing or talking to me. The staff told me I had to go to the back room because if things are dislocating they need to be able to keep an eye on me. They then told me I was talking about my condition too much, causing concern and being a distraction, so I had to be in the back room so others could learn. My dad eventually decided to come pick me up from school which I was reprimanded for because we didn’t follow protocol. I was “fine,” so I should not have had to leave.

The next day the school psychologist talked to me. I will never be able to forget the cruelty I faced in her office that morning. I was told I needed to stop “celebrating and flaunting” my disability. That they could see me trying to become my illness and seeking attention. She stressed how hard it is to believe I am in pain when at break I can be seen talking and laughing with my friends. “If you are in so much pain, wouldn’t you want to stay inside and rest? It just doesn’t make sense.” Despite explaining that distracting myself with my friends is exactly what my specialists want me to do, it was not a good enough answer. I was told it is hard for staff to believe me when the nurse is the expert and says I am fine. I tried explaining that EDS is a rare disease and I do not think the nurse really understands, but was assured the nurse sent an online article to all the staff so they do understand. I was just snubbed no matter what I said.

I wish the school staff could understand that this diagnosis is new to me, but it is part of my life now. As the doctors are checking for more things, new problems are arising. I am not “becoming my illness” or “seeking attention,” I am talking to my friends because they want to know what is going on. Just because you only decide to hear us talk about my illness does not mean the majority of our conversations aren’t about crushes, hanging out and books. You are only looking to see what I am doing wrong and you are missing me doing my best to be a normal teenager.

I am trying my hardest to be a normal senior.

I went to Senior Ball, Senior Picnic and am anxiously awaiting graduation. I know my EDS, CRPS and other medical issues do not define me. You are the ones who do not see that. I hope you can show more compassion to kids with chronic illness in the future. I may be graduating, but no child deserves to be treated how I was. My disability may be invisible, but it is with me every day. Please change your ways because teachers of all people should know words hurt just as much as punches.