Living with HEDS: Struggling to be Understood

Of course! Thank you. I wish you all the luck. My mom used to be a nurse so I understand getting all consumed with the medical side of things too, and that can be a lot. Remind your mom to do something spontaneous every now and then. Chronic illness makes that so hard, because it feels like something bad will happen, but it’s important!

@Margot, thank you so much for your perspective. I appreciate your understanding and your time in explaining your experience, and I feel comforted knowing someone else out there has felt what I have. Congratulations on your strength and bravery in leaving those behind who did not help you cultivate your energy with this diagnosis, and I wish you the best as we all try to manage with this crazy eds life!

My ex boyfriend was also someone who had a very hard time with my conditions, and I had been with him for 9 years when I was in the beginning stages of trying to get diagnosed, so I ended up trying to pretend I was ok or convince him I was really sick and it was exhausting. At the end of the day, I I literally do not have the energy anymore for people that don’t believe me (my energy levels are not what they used to be). There has been a lot of loss with that, because I have left relationships and lost friends, but I have also found out who I can be real with and close to and I have found the most amazing, understanding and kind people in letting go of others. I’m not saying to leave your relationship, but definitely try to take care of yourself and learn what works for you. There isn’t one way to do this, and you don’t have to be like your mom if you don’t want to manage that way. I don’t have it figured out either, but I know the less stress I have and the better support I have, the better I do.

Yep, also the ones who are too invested and act like you can’t possibly do anything yourself. My ex was like that.

People that don't believe you have no weight on your life. I cut them out of my life cause they hurt me too much. It's hard but it's right thing to do

Cut out the people who don’t believe you is my advice.

I’m in the world of denial where my parents don’t believe in it and my doctors aren’t helping me properly. My friends are supportive about it, however. It feels like I’m stuck in an ableist world where I don’t have permission to be chronically ill