This is an often asked question. It is VERY helpful to have an official diagnosis. It gives you a name for all the weird things that your body does that doctors can’t explain. EDS affects the body in SO many ways because SO MUCH of the body is collagen based.
Once officially diagnosed you also know you belong to the herd (of zebras) now and there is power in numbers. There are people who understand what you are going though, the headaches DocTards cause for us, and the daily grind to just keep going.
Knowledge is power. Knowing you have an EDS diagnosis on paper from a qualified M.D. is HUGE. There are still lots of a-hole doctors and nurses, etc but they can’t deny that you have a connective tissue disorder. That is a big deal and it affects so much of your life, your body, AND how medical professionals should treat you. Everything from closing a wound (stitches vs. steri strips), to why your body doesn’t react as expected to pain meds or anesthesia, and the fact that there is an underlying condition and it is not hypochondria.
Your body is mostly collagen. It is important for our medical professionals to know ours is defective and to treat us accordingly. There are lots more reasons too, but those are some of the big ones.
The thing that changed once I was officially diagnosed too was that I now knew what to call this thing I battle every minute of every day. It validated me and gave me a community to belong to. For me, the validation was a biggie.
Anyway, hope that helped in some way.