Dear Mary,

That person was a scumbag and I’m glad you were able to work through and process the experience in your own time with support.

 

I often wonder when I talk or write with people of my age w/ CAH that  because based on the time period the intense learning about CAH from the major medical institutions that maybe the next step of being able to process having CAH was never completed and this is what we are doing? I do understand where you are coming from but CAH is a chronic medical condition and it isn’t something that can have the door closed on it. Others with medcial conditions are allowed to express but when it comes to CAH? It seems like we are discouraged for it? maybe because of the sexual part. I had a nurse wrinkle up her nose when I talked about my surgeries... people with diabetes can talk... people with prior cancer can talk.

Mary, I put everything about CAH in the back of my mind for years and years ...I ended up with a nervous breakdown and tons of anxiety because everytime I wanted to speak it? was shush you need to get over that so i held it in and in only to drowned the anxiety with alchohol ...I’m sober now but if I had been able to work through it been allowed to talk more really   my parents were great and they talked as much as a they could about it but even still not like how people bring up other conditions ....geeez some are going to hand their kids letters in future.. they can’t even talk about it but  at least they are trying.

We are only coping... gathering support for a chronic medical condition.

It’s almost like and I hope I’m wrong but it seems like we shouldn’t talk about out feelings because of being born with this conditon we shouldn’t have any feelings ...we deserved to be treated that way because others not born with CAH have a destain for the medical condition because of the genital connection. We should keep quiet and take it over and over ....mighty messed up way to deal with a medical condition. it’s still in a way like a taboo or a pink elephant. All that is required is validation of the condition.

Ian, I had no idea that Men even had CAH until I started researching ..get this I have a thyroid condition and the NP had enough of a suprior attitude to tell me not to read about it. I could tell then what she really thought of me ..the distain...you could see it in her eyes  I felt really bad about having something else  until  I found three people with the condition and had the web page to the national organization. Contrast that with the finding out about having celiac sprue - That doc called me personally chatted for a little while and wanted me to come in for an appointment to learn about the celiac sprue but was confident that I already knew how it worked because I told him about all the celiac sprue sites that I printed off for the diet plus I knew about the support groups. The cancer? Bless those cancer docs for listening to me - and I don’t even think about the cancer that much know because it’s their jobs -they let me express and work through it. You’ll work through it Ian and you will be the nurse that puts their arm around someone to help them through their darkest hour.