My EDS Challenge Day 14- Explaining EDS/HSD in Life with Ehlers Danlos
- May 14, 2021, 3:33 p.m.
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 14- Explaining EDS/HSD
The people closest to me know the struggles I’ve been through to get where I am today. For those of you who continue to watch my video logs, thank you. So I dont feel I have to explain myself too much more. But when I meet someone new, the conversation of EDS always comes up. It affects every part of my life and it is my reality. Prior to the revelation of connective tissue disorder it was hard to understand the “why” behind all my pain. And it was hard to try to connect all the dots of everything that was going wrong in my body. When I meet other people with EDS, it is sort of hard to explain my presentation to them. I don’t really present in a classic way which is probably one major reason it took 7 years for a diagnosis. I do not dislocate joints and im not really overly bendy because my muscles have tightened up so much. And I have issues more so with my lower body (hips, pelvis, legs). I also had a rare nerve entrapment issue and vessel issues that arent common comorbidities of EDS… but I think in the coming years with more education, we will see that nerve and vessel issues are common as well.
When I meet a stranger, I explain that I have a genetic condition that affects collagen production. Collagen is found everywhere in your body… ligaments, joints, skin, vessels and most importantly (for me) it surrounds all your organs. My organs lay on top of eachother in inappropriate ways causing me a lot of abdominal/ back/ and pelvic pain on a daily basis. I have to be very careful about activity level, solid food, and changing positions so I dont put too much pressure in one area at a givin time. I also explain that every organ system can be affected so there are other co morbidities. Whenever someone says they have EDS, i always assume they are in a lot of pain. Even if they dont show it on the outside. Even if they work full time. Even if they have kids. Even if they can walk/ run or even do certain sports. What you may not see are all the insideous issues.