When I Decided to Tell My Teacher About My EDS Diagnosis

Earlier this year, I was diagnosed with a rare connective tissue disorder called Ehlers-Danlos syndrome (EDS). Getting to the point of diagnosis has been a long and exhausting way. However, being diagnosed was an incredible relief in the first few moments. Finally, I received an official confirmation that my pain is real and that I am not making it up.

They believed me.

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

But like with so many other diseases, getting a diagnose is not only a relief, but also a huge shock. Even if you try to prepare yourself by doing research about the disease on your own, you will never reach a level of preparation that will leave you unmoved. Only recently I came to realize that. After being diagnosed, it took some time until I felt the real shock. I started to think I wouldn’t have to have this experience because I had informed myself so well about EDS. I thought I was prepared… but I was wrong.

Looking back, I can say that I was in a phase of denial, so the actual realization hit me all at once. It wasn’t that I was becoming aware of my illness day by day, it hit me in one moment.

It was brutal.

It all began with an ordinary day of school. I had to fill in a form for the upcoming school year. Beside “normal” classes, I also had to elect my physical education (PE) courses. Of course, I knew that I was not able to do all kind of sports, so basketball or gymnastics weren’t even an option. My motto was: take what hurts least. In the end I had athletics, swimming, table tennis and rowing on my list. It really was about choosing the lesser evil and I knew I would be having problems with some of these kinds of sports. However, I wanted to be “normal.” I didn’t want to stand out, and so I decided to push myself through PE classes.

I would have handed in the form, if it hadn’t been for my mother who still had to sign it. I gave it to her, she read it, turned to me and said, “Darling, I am sorry, but I think you are not able to do these kinds of sports. I can’t sign it.”

There it was. The moment of realization that hit me right in the face. My mother was right, of course. I wouldn’t be able to participate in these PE classes. My disease doesn’t allow it. And at this point I really feel the urge to say that I am a passionate rival of self-pity. I really hate it. But in this moment, I cried and wondered, “When did I get so sick?”

And the honest answer is, I really don’t know.

After a sleepless night dedicated to thinking about my illness, I decided that I must find a way to adjust my PE classes to my needs and skills. So, I went to a teacher to ask for advice. By going to him, that meant that I would have to tell him about my disease – something that I had always tried to avoid. I knew that one day they would have to know about it, but I always tried to put this conversation off. I just wanted to be a normal teenager, I didn’t want to be treated differently.

Nevertheless, I went to my teacher after class and asked him whether I could talk to him. We stayed in the classroom and he seemed quite worried. I told him that I have an illness called Ehlers-Danlos syndrome, which is the reason why I get hurt and bleed easily, which also causes frequent dislocations. I also said that it affects my inner organs and causes me to be in a lot of pain.

To be honest, I had prepared myself for the worst and almost regretted telling my teacher about my disease. To my surprise however, the negative reaction I feared didn’t come.

Instead, he just kept looking at me without saying a word. And what mattered the most was the expression he had on his face. It wasn’t the annoyed, uncomprehending, derogatory expression I feared. It was a mix of understanding, sadness and pity. And although I hate pity, I was so relieved to get such a reaction. So often before, I had to cope with the lack of understanding others let me feel while they told me that I must be faking it to get attention. He seemed truly interested and even asked me some questions about EDS to understand everything better. He was really supportive and helped me to solve the problem I had with PE.

After this conversation, I was incredibly relieved, but on the other hand, somehow quite sad… and I don’t really know why. Apparently one could see my despondency, as my friends asked me if I was OK. Until this point, I had only told my best friend about my disease, and in that moment I decided it was finally time to tell my close friends about it. And I don’t regret it at all. As a result, on the same day, one of my friends sent me a very encouraging message – which I normally wouldn’t of expected.

Even now, four months later, it is still very emotional to remember this series of moments. However, I can definitely say that I am glad I made this decision then. Even though I will forever remember this moment as deeply distressing, it helped me to gain courage and strength. I am now fully aware of the fact that I must accept my disease and that I must stop trying to be “normal” because it would tear me apart. The way I am is my normal. and I must listen to what my body tells me. There is no point in trying to be like every other healthy teenager – because I am not healthy.

The most important thing I learnt that day is that sometimes you will get support and understanding from most unexpected people. Even though there are countless uncomprehending people out there, the good ones, the ones that care about you, still do exist. They are out there somewhere, you just must open your eyes and start looking for them. Often, they are even closer than you would have expected.

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