Day 7 – What are your top 5 coping tips? 

  1. Be kind to yourself on the bad days. Allow yourself to rest. Recognize that resting is not only not a waste of time, it’s productive because on the worst days, it’s what your body needs in order to recover enough for more productive days ahead.
  2. Do what will distract you from the pain. When I can, I read and write. When I’m not well enough to read, audible (essentially books on tape), Hulu, Netflix, and Amazon Prime are my friends. I also like to color and knit when my hands will allow it!
  3. Remember your needs when agreeing to do something. If you need to meet in a quieter space, or need to find a time to meet a friend one on one instead of agreeing to attend a party, ask. It took me far too long to realize that people couldn’t possibly accommodate for my needs if I didn’t first recognize what they were, and communicate them.
  4. Learn to sit with the pain. This means accepting that pain is always going to be a part of your life. It means letting go of the 24/7 fight against the pain. That fight is exhausting, and once you accept the pain, you free yourself from the fight. It also means that if you eventually reach a state where you’re not experiencing pain you can take the time to enjoy it instead of worrying what will cause it to start again.
  5. Get involved. As a special educator, I learned to advocate for myself by first having to advocate for others. If you’re anything like me, having others to fight for will make it a lot easier to make advocating for yourself a priority. Try blogging, or if that’s not your style, get involved with a local support group. Finding a way to make a difference for yourself and others with EDS will make you feel less helpless, and more in control of your fate.