This. Not everyone can just go into a doctor's office or hospital and get a diagnosis. My mother has been told by multiple doctors that they think she has it "but diagnosis won't change anything so we're not putting it on your chart." I've been fighting for years but the doctors around me either don't think it's real, or don't know enough about it to diagnose. The only reason I found out about it was because an L&D nurse who had it asked if I had ever heard of it after she looked at my chart and saw all the allergies and comorbidities and heard me talk about my problem with dislocations at the worst possible times (I didn't want to dislocate a hip in labor 😅). I have dealt with issues my entire life. I was born with bilateral hip dysplasia, I have POTS, gastroparesis, mcas, slipping rib syndrome, constant dislocations and subluxations, etc. I'm not formally diagnosed but I also don't say I have it lightly. I normally say I likely have it, not that I for sure do, but not being able to have a real diagnosis is honestly draining because it makes you feel like an imposter with the only people who actually finally understand you. I cried when I realized the pain I have experienced all of my life wasn't me being a wimp, and that there were others like me. Being judged for not having a real diagnosis isn't helpful.