I know where you are coming from in regards to feeling alone with this. It is the weirdest feeling in the world when after 20/30/40/50 years of CAH you look on the internet and find there are others with it.

To me it was both a relief and a grief. How could anyone out there have MY disorder..... it’s an unreal, kind of surreal feeling? One sort of takes on ownership in isolation, and almost becomes possessive of the condition and I initially resented that anyone else had IT.

That for me took a short while to get over - a few minutes, a few days, I can’t remember now.  Following that exercise in self-pity, I just immersed myself in devouring everything I could learn about CAH and it’s similar/varying effects on different people.  I shed buckets of tears throughout this cathartic process, when I read sites such as the AIS (Androgen Insensitive Syndrome) sites.  Their  stories were packed with the same types of emotion, shame, secretiveness and feelings of being a freak that I had felt my whole life.

The feeling of ’being the only one’  is an interesting process which could have been avoided had doctors been a bit more open in the past in linking people up with their other patients (with their permission of course).