How to Cope with EDS

In 2020 I was diagnosed with hEDS and Fibromyalgia. That answer wasn’t good enough for my lifetime of issues so I didn’t accept it until months later. Part of the process has been understanding how to cope; how to deal with the day-to-day. I’ve read countless posts on Facebook and Reddit about what works for other people, and what I learned is that it’s subjective. (Helpful, right?) While I and other Zebras would love to provide a packaged solution for those newly diagnosed, the best thing that we can do is be a positive part of a new Zebra’s life. There is so much pain, emotional and physical. We all need to be reminded of the basics from time to time. These are the actions that have helped me continue to be positive and move forward: 

  • Learn to laugh at yourself. You’re going to do some ridiculous things because of hEDS (and you’re human). If you don’t learn to laugh at yourself and keep it lighthearted, you’ll be miserable all the time.
  • Be in the moment. Sounds cliché, but it is important. Life is going to be full of moments of pain and frustration. If you spend most of your time, good and bad, worrying about the future, the would haves and could haves, you won’t live for now. You will miss out on what you DO have. 
  • Show yourself grace. A lot of it. Think of how you would treat a child with a chronic condition – you wouldn’t judge them, you’d laugh at their jokes, and you’d make sure they knew without a doubt that they were loved. Now treat yourself like that. You are your biggest fan and your biggest enemy. If you treat yourself like crap, which a lot of us do because of guilt, and you don’t show grace, your mental state will deteriorate. You need to learn to love yourself for who and what you are (a badass Zebra). There is only one of you, and you are fabulous the way you are. You deserve grace, love, and happiness. 
  • Know and accept that your best will differ from day to day. You cannot expect yourself to be functional every day, but you also cannot let yourself be miserable every day. You have to set boundaries for yourself that push you to continue living, to continue doing what you love. You also have to set boundaries of what you shouldn’t do some days for your own health. On the days when you have to accept less, know that you are doing your best by setting those boundaries and taking care of yourself. You are being proactive for your next best day.
  • Do what you love now. I used to always plan for the future and say, “I’ll do it when I have enough money, time, etc.” Now I travel all over the US with my family in a converted short bus. It’s not easy and some days I question my own sanity, but I get to experience places I never knew existed because I chose to do what I love now instead of waiting. I’m not saying go into debt or go skydiving; I’m saying take a real hard look at what you love, and see how you can make it work now.
  • Love yourself for the imperfections. We give things character by making them imperfect. You weren’t made on an assembly line. Embrace what makes you different, and stop comparing yourself to everyone else. Rock some zebra yoga pants, a Zebra onesie or tattoo; whatever brings you joy. 
  • Don’t give up on living. Try new things (food, hobbies, routes home, clothes, etc.), set goals for yourself, and don’t say no to new experiences.

Mindset is everything. Love yourself like this guy loves life.

This was originally composed as a Reddit response to someone asking how to cope and then refined for blog content.