My EDS Challenge Day 22- Things I wish you knew about EDS/HSD in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 22- Things I wish you knew about EDS/HSD

1) It’s extremely mentally and emotionally debilitating to not be able to make plans the way I used to be able to. I put up boundaries around my in person time to protect myself, not because I don’t want to be around you.

2) If you see me doing a thing one day, that doesn’t mean I can always do that thing. I am constantly paranoid that people will use my good days against me later.

3) There are consequences for every physical thing I do with my body. Always. Part of this condition is that my joints/connective tissue all around my organs are shocked and appalled when I use my body for its intended purpose.

4) That EDS/HSD is NOT a rare disease. It is way more common than people know. The actual rarity is finding a specialist who knows more than one slide worth of information about it.

5) We are all desperately waiting for DNA testing to figure out how to vindicate all of us with hEDS/HSD. The physical criteria for diagnosis leaves so many of us out.

6) Just because I look good doesn’t mean I am not internally screaming. It does not mean I am “getting better”. I physically experience the world so much differently than most people due to my dysfunctional nervous system and connective tissue. I grew up thinking so many things were normal that were not.

7) I am always having to plan an exit route for any situation in case my symptoms get worse out of nowhere. Don’t take any of this planning personally or think it’s not necessary. It 100% is.

8) I carry around a lot of stuff. Sometimes its overkill. But better to be prepared than to feel anxious about not having what I need in case of a flare up.

9) Yes, I talk about my conditions a lot. No they don’t define who I am as a person. But they are a big part of my life. And raising awareness is my life’s passion/ calling.

10) Having a disability is super expensive. It takes a long time, mounds of paperwork, and a lawyer to fight for disability benefits. And even if we get them, its not enough to pay a rent and live off of. EDS is not a qualifying condition and neither are a lot of the co-morbidities. You have to really get creative to find another way in.