Having just read the postings on the main board re. the good things about CAH (and they were good) it caused some things to surface within me about the things that p..... me off about this condition (esp. as it operates within my circle of life).
Apart from the types of experiences, mostly underpinned by total ignorance, that Aimee reflects on and is common ground to so many of us who are now adults, there are new experiences which keep being added to the store of 'pain' or 'hurts' or 'lack of validation' whatever you may want to call it. I'm sure I'm not the only CAH adult who experiences this.
One of these things is the continual emergence of the secretiveness of CAH as compared to other conditions. In our family a new member was born a few years ago with another genetic condition which constantly gets referred to and all the concern associated with it. The wider family (parents, brothers, sisters, cousins, aunties, uncles) were advised to have mutation testing done, which they did. Furthermore a young niece has recently been diagnosed with a severe thyroid condition and that is right 'out in the open' and freely discussed.... however CAH is never mentioned. It totally annoys/angers me as though it's insignificant and means zilch. No mutation testing done for this nor anyone in the wider family even knows that CAH is in the family.
I'm an adult and I don't care if the whole world knows, such is my acceptance of this condition. I have no fears of people wondering what my genitalia looks like, if that is their obsession. They'll never see it and they can speculate all they like.
Also my experience with some groups who deal with CAH families (not this message board obviously) is their apparent fear of adults who want to 'tell their story' or raise issues for discussion which the group sees as 'maybe' disturbing to new parents. The problem is where can there be a forum for CAH adults to express their views and experiences within support groups in a less than 'shallow' or superficial way when there is such an overprotectiveness towards families with newly diagnosed or young children with CAH? It's as though anyone who wants to tease out their experiences or raise issues which may not be all 'nice' or may be challenging are soundly muzzled. It's another example of the non-acceptance of the validity of the lived experience.
My list extends to the less than optimal treatment often received at the hands of the medical profession both medically and of the 'whole person'. As adults there is a greater dirth of doctors - be they endocrinologists or not, who have a thorough grasp of excellent management for CAH people. Of course there are those who are very competent, but geographically everyone is not able to access these doctors. In the endocrinological field much more knowledge and treatment emphasis is placed on diabetes by far, as well as, thyroid conditions. Again we feel second class citizens.
That's enough for now!
