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13 Lessons Ehlers-Danlos Syndrome Has Taught Me

Being faced with disabilities, I often search for reasons as to why I am a bad person because of the things I can no longer do. Never have I taken the time to sit down and realize everything being disabled has enabled me to do or feel, and I haven’t (until recently) realized how awful that truly is. My mind is constantly plagued with feelings of doubt, self-loathing and bitterness – all because the life I lead is being halted by things I can’t help. Honestly, I find it really hard to control my thoughts when I cannot control my illnesses.

I realize now that while I can’t control my life of disability, I can control my future. I can be happy and be in pain. I can still do things most other people can, even if it takes me a little longer. However, for anyone who is yet to come to the realization that while this is your life, your illness doesn’t have to mean it has to be terrible. Disability is the best teacher I have ever had. Here are a few things having disabilities has taught me:

1. Having a disability makes me truly grateful. I am still able to do a lot of things in life: I am still breathing, I am still loved and I am still here. I am still trying – nothing else matters.

2. I can relate to people in most situations. Even if illness or disabilities are not involved, I am able to relate to people in situations that most can’t because I have already been through so much at such a young age. I will be forever grateful to my illnesses for forcing me to grow up at the age of 8, purely for the reason that they have taught me so much about myself and other people.

3. I am able to spread awareness for my illnesses through social media. Most of the people who are in my life know what Ehlers-Danlos syndrome (EDS) and the other diseases I have are because I have shared so much about myself on social media. I have put together videos to explain to my peers how my disabilities affect me, shared a lot of articles that having a platform such as The Mighty have enabled us to write and even clued doctors and general practitioners in on what it means to be living with EDS. None of this would have been possible if there weren’t support groups, places that showcase our work and information readily available with a quick search. I would be so lonely without the internet. Totally invisible.

4. It puts into perspective what is most important in life. The petty arguments with your siblings or parents, the thing you said as a joke that was taken the completely wrong way… all irrelevant. Of course, everyone realizes this eventually, but I feel like the older I have gotten the more health problems I have had, which has inevitably forced me to deal with only important things. Hell, it might even mean I have lost a handful of friends over it. It’s all been worth it in the end, though.

5. It makes me question if people are similar to me. I am and always have been a “people watcher,” and I have often – more than I care to admit – looked around at people in a shopping center and focused on the people who look upset or as if they were about to burst with anger. It has always made me wonder what it is in their life they are so upset over. Do they feel like no one understands them? Do they feel invisible like I do? Why are they so angry they are practically sweating hate?

6. I can talk with ease about my disabilities. I’m an open book when it comes to my health, if people aren’t afraid to ask – which they shouldn’t be! It’s not embarrassing or awkward, I just wish more people knew that it’s OK to ask a disabled person what is wrong – but there should never be an expected answer.

7. There are so many people who experience life the way you do. And a good percentage of those people are willing to listen to you and offer support and advice – it’s like your own adopted family!

8. I have learned there is no such thing as normal. Everybody is incredibly different than one another. No one should fall under one of two categories – normal or abnormal. You are not defined by something you can or can’t do.

9. I have formed an amazing bond with my doctors. Which isn’t something most healthy people are able to say/do because they aren’t seen regularly enough to maintain a friendship.  

10. Those who are still in your life truly love and care for you. They stayed when everyone else left. They stayed because they love you and truly care about you – they always have. The other people who entered and left your life just as quick weren’t supposed to be there; but I have learned there’s no need to mourn a person or a friendship. There’s still plenty more people left in the world.

11. It’s OK to be afraid, just don’t let that anxiety stop you from doing what is important to you. Pick away at those voices in your head telling you you’re this or that, that you deserve the pain, that only you feel this way and that things won’t ever improve. Recognize the reasons as to why you are having those thoughts, but most importantly, know it is OK and completely normal to feel afraid for your life and your future, especially with a disability. Your zebra family is right behind you as always.

12. There’s always an option to continue going, and you do keep going long after you think you can’t.

13. Do whatever you need to do to make yourself happy… but do not hurt others in the process of finding your happiness.

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