Living with EDS

What does it actually mean to LIVE with EDS?


It means my life is no longer dedicated to working as a network engineer.

It means my life is now dedicated to applying everything I learned to managing my health and making life amazing.

So… clearly, an identity and attitude shift happened as a result of learning to live with EDS


But, on a day to day level, it means I can do less.

I can’t work.  So, my job is managing my household and my health.  I spend a lot of time at doctors and at home.

I limit my adventures around town – so each outing is filled with moments that create memories.  Instead of running random errands, hanging out with “kind of friends”, meandering around parks, or going to the gym, I pick an adventure or two for the week.  A trip to a state park to watch the waves and a small walk by the shore?  PERFECT.  A great conversation with someone who also accepts my EDS?  Holy crap, best thing ever.

So… clearly, I have learned to value life for its moments of connection to nature and others over “doing things” or “accumulating things” as a result of living with EDS


It means I wear bracing as needed.  If my ankles are hurting and I want to walk – I put on my braces and pace myself.  These external supports reduce pain and allow me to do more 🙂  Some days I need to use my rollator, some days I can walk around without any support (including ankle braces!).  It also means on days where the pain is more than what the bracing can handle, I have to stay in bed.  End up watching a lot of documentaries this way… 🙂

So… clearly, I stopped caring what other people think and do what makes me happy as a result of living with EDS.


SO… Clearly, Living with Chronic Pain from EDS has made my life very different… but not in a bad way.


What amazes me is this:

I was born with the genetics that make my life very challenging; but, those genetics also make me UP FOR THE CHALLENGE.


SO – when living with EDS and chronic pain makes you feel left out, alone, or different, remember this: