Why I Will Continue My Advocacy For Ehlers Danlos Syndrome

The first thing you learn when you're chronically ill is that people will talk. Rumors will spread about your illness. People will judge you for aspects of your life that are out of your control. You will feel alone. I first experienced this a year ago when I was diagnosed with Ehlers Danlos Syndrome.

This gossip can destroy a person. I have seen people in online support groups on the verge of giving up because of rumors. I have experienced losing friends and people I love. I know the impact that one simple statement can have on a person's future. The gossip doesn't matter in the future though. You will move away. You will find new friends. You will start fresh somewhere else. What does matter is how you respond.

In my experience, there are two ways that people tend to go when it comes to responding to this gossip: they silence their illness or they advocate. I chose the latter, and I will continue to choose it every day.

The truth is that so many people are too scared to speak up about their illnesses. They feel lost in their own body, yet they don't want to tell anyone in fear of their reaction. I know people like this. They keep quiet on social media, they avoid the subject, and they live their lives like their illness does not exist. I don't blame these people for choosing this approach. I know how much worse it makes everything when you dwell on illness, so I understand the logic behind this decision. My advocacy is not dwelling though.

My work as an activist spreads awareness. It encourages more people to speak up about their experiences. It ends the stigma surrounding rare diseases like my own. Most importantly, it makes people feel less alone. I have met hundreds of people who I can now call friends through my writing. These are people who could relate to my writing and wanted to share their story as well.

This experience in sharing my story over the past year has taught me so much. It has taught me that even when you feel alone, there is somewhere in the same situation. Even when you feel too rare to be taken seriously, you can find someone with your same conditions to relate to you. Even when you feel like giving up, there is still a reason to hang on.

I will continue to spread my story. Sure, I have received bad comments. Yes, I know that it draws attention to my disability for future opportunities. Yes, I know that it may scare people off in the future, but I am willing to live with those "what if's". For every what if, there is a person that doesn't give up because of something myself or another person wrote. For every what if, I have helped a person better understand their diagnosis. For every what if, I have moved a little bit closer to a cure for EDS: a little bit closer to a brighter future.

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