http://themighty.com/2016/05/letter-to-partner-of-someone-with-ehlers-danlos-syndrome/

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From all the information and knowledge that I’ve gained about EDS over the last seven years, I know very well that it is something that will continue to take the front stage in my life for all the years to come. I can’t say that I want it to be this way, but the truth is, self-care will and must be a priority for the rest of my life. I wouldn’t want EDS to “haunt” me till my last breath. I hope I’m able to stand strong through it and find more reasons to be grateful. Perhaps even for EDS. 

EDS can affect your relationships in ways you can’t even imagine. Dynamics within family and friends are altered greatly and you’re able to see way more clearly than ever before. You get to see who will stand by you and who won’t, or might be unable to. There are people you have to hold close to you and some you have to let go. 

A lot of times you, as a patient, grow and develop in ways others can’t keep up with. And that’s where everything starts to look different. EDS is a challenge, not just for the patient but also for those in his/her support system. It is something that requires everyone to step up the game and realize the intensity of it, and grow through the necessary life change. 

Even though it’s not been easy, I do strongly believe that whatever changes I had to deal with/ all the painful decisions I’ve had to make because of EDS (or for my health) were for a greater good. Something will come out of this. At the end of the day, even if I have to share my story for the rest of my life, just to directly or indirectly become a part of someone else’s support system, I’d be at peace. I would have made a difference.
http://themighty.com/2016/05/letter-to-partner-of-someone-with-ehlers-danlos-syndrome/