Today we have Deserea from the US talking about her condition, she has the same condition as me.
What intersex condition do you have?
My name is Deserea. I’m from the United States and I have Complete Androgen Insensitivity Syndrome. This means that I have XY chromosomes but my body does not recognize the hormones that support the maturation of male characteristics. For this reason, I developed externally as a female.
How old were you when you found out?
I was 14 years old. My mother and doctors had no clue. It took my own questions about my body to start a process of testing that discovered it.
How did it affect you at first?
There I was, an awkwardly tall fourteen year old girl with big hands and feet just trying to find out why my period hadn’t started and BAM…I’m now face to face with a newly discovered reality. I didn’t want to believe the doctor. The first thought I had was, “You are lying. There must be a mistake.” Everything I knew and believed about myself was challenged. I was ashamed, angry and in mourning all at the same time.
Does it affect you dating?
I have dated the same man since 2004. Before him, I never dated anyone. I was afraid that no man would accept me as a woman because my genes say XY. I pushed everyone away during high school but it didn’t work on this one guy. I was horrified when he actually showed interest in me! I decided to let him know about my syndrome in layers. First, about the infertility, a few months into our relationship, he learned there was a “birth defect” that causes me to have to take hormones. It wasn’t until 2008 that I got the courage to open up completely and answer any questions he had. I thought he would run away or be angry…he was neither. We are still together today so I guess dating is going well.
How does it affect you now?
Even though my boyfriend, close family and friends know about my CAIS, I have not felt comfortable enough to identify myself openly as an intersex person. I admit that fear has kept me silent. Now, however, I have been finding the strength to open up more. Now, I want to use my experience as a platform to help others take pride in who they are holistically and in every sphere of their lives.
What would you say is the best thing about having this condition?
I’m told that menstrual cycles are brutal…ha ha! Can’t have one because I have no uterus or ovaries. I’m most grateful for that.
What would you say is the worst thing about having this condition?
Not being able to have children is the hardest thing I have had to come to grips with. A close second, however, is dealing with people in society who have warped understanding or no understanding at all about what it means to be intersex…physicians included!
Finally, what advice would you give to people who are newly diagnosed?
Breath! Your life has not ended, it simply has changed. Love yourself for who you are and give space for new discovery of that truth. Educate yourself and surround yourself with supporters.
Anything else you want to add?
The medical community HAS to learn more about Disorders of Sexual Development. I have yet to find a physician who knows more than I do! We can be so isolated and in the dark about treatment options and support resources at times.
I have to say Deserea has the perfect advice for anyone who has just found out! Thank you Deserea for taking part!
If anyone has any questions for me or the person who has taken part post below and I will either reply or share your question with them and get their reply! I hope you are enjoying this series, and if you have any requests let me know!