Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
I have always been mistaken for being much younger than i am. I have struggled with it because as a man, one is often not being taken as seriously as peers and this has affected my career. Image does matter and looking boy-isch is not funny at all.
In this regard I also think being not taken as serious or age appropriate from very early on in life has a mental impact. I got used to not being taken seriously to my peers and not respected as I think I would have been when I looked my age. Sure respect has to be earned but the cards are shuffled differently when dealing with EDS.
I remember when I met my now wife and I was introduced to her friend group we overheard them whispering, what on earth she, my wife, was thinking, dating a boy. To be clear, I was 26 and my wife 27. Mentioning my age did nothing to change their first impression and to gain respect or being a match in general conversation. I was already behind 10 points, just for my appearance. During conversations, in private or professional, people often had an attitude like ‘ what does that youngster think he knows … ‘ The fact that i was quite skinny didn’t help either. In my late 40th i gained some weight, and i take it with pride. I might still look young but at least my dad-bod is age appropriate.
I didn’t even find it offensive. I was, and still am, used to being treated that way, pushed to a corner and not included and I am convinced one acts the way you are treated. I am an introvert but being treated like that pushed me toward the autism spectrum.
Fighting EDS takes so much of my energy that I can’t, and don’t want to fight the image others have about me. But it is something about EDS that formed my character profoundly and made my life hard in a way only few people understand.
Living with Ehlers Danlos Syndrome 