The Rumors That Spread When I Begin Advocating for EDS Awareness Month

Yesterday I walked into class ecstatic. There was even a slight bounce to my step as I made my way into my Sophomore Lit and Comp class; this was quite the feat for me as someone with loose joints and poor proprioception. Though it was rainy and cold outside, it was finally my favorite month: May. I don’t love May for the typical reasons like a birthday or the end of school, but rather I love May for the awareness. In this month, my social media feeds fill with Ehlers-Danlos, celiac and chronic fatigue posts, and I feel at home.

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

This feeling quickly faded as I walked into class. I noticed a distressed look on one of my friend’s faces, and I was soon informed that the gossip about me had begun again. Normal teenagers would be gossiped about for their new hair or boyfriend, but my situation is definitely not like other teenagers’. Rather than people saying that my shirt is too tight or my hair too curly, they say that I am overdramatic or faking my chronic illnesses. They say I could easily be fixed with ibuprofen if I had some sense. They spread ridiculous rumors about my situation that are quite frankly not true.

Every time it seems that these rumors have stopped circling, they start up again, and each time they start it’s for a more ridiculous reason than the last. First it was about how I didn’t have Ehlers-Danlos syndrome, then it turned into how I could be healed if I just took ibuprofen and now they talk about my posts and pictures for awareness month. Everyone assumed that it gets better after the first few times, but the truth is that it just gets harder. The more people talk, the more people start to believe the rumors, and the more that the rumors get around, the more I am talked about or shot looks in the hall.

No one should have to dread high school for these reasons. No one should have to wear headphones in the hallway so that they don’t hear what people say about them. No one should have to pretend to be on their phone to ignore the looks. Every day I walk through the hallways with my headphones blaring music and my head down. Most people assume I’m just being a teenager, but the truth is that I’m scared of what I will hear or see. The beginning of this school year I constantly heard the rumors as I walked by. I was shot looks and people would look me up and down searching for some sign of physical ailment. My headphones became my lifeline as I attempted to ignore these looks and rumors.

The sad reality is that this is how many spoonies go about their lives. We are bullied, called fakers and left with few friends at times. Having a rare, chronic illness is hard enough as is – no one should have to worry about gossip on top of that. In these hard times though, I always have my spoonie friends. They understand my illness and situation. Most of them have been in the same position in the past. Many of them only have the people they meet online. I want to thank these people who understand. These people have enough on their plates as is, but they take time to talk to a 15-year-old girl and make her feel less alone.

Thank you to my spoonie friends who help not only myself, but tons of other teenagers with EDS. Thank you to the people who stop what they are doing to answer my texts. Thank you to the people who have helped me through some of the hardest times of my life. You are sometimes the only people I can talk to who understand, and I will forever be grateful to you for that.

To anyone who is the subject of rumors for their chronic illness, you are not alone. It may seem that way, and there may not be anyone physically near you, but there are hundreds of other spoonies going through the exact same thing. I am not going to sugarcoat it like most would; it does not get easier as time goes on. If you look in the right places though, you might find that you are not alone. It’s hard living with a rare disease, but just because a condition is rare does not mean you are alone. There are always people just like you; you just need to know the right places to look.

Thinkstock photo via Highwaystarz-Photography.