Jan's Story

When I first found out

I first learned about my condition, Androgen Insensitivity Syndrome or AIS, in a college classroom, where, as an 18-year-old freshman, I performed a karyotype on the specimen of cells taken from inside my mouth (buccal smear). Karyotyping is performed by making a photograph of the stained chromosomes. Then each one is cut out and placed in the proper order. There are 23 pair of chromosomes, two of which determine the "genetic" sex of the person. Typical females are 46,XX and typical males are 46,XY. When my karyotype showed I had 46,XY, I asked the professor what that meant. She explained a condition called "testicular feminization" and suggested I meet with a gynecologist for a better explanation.

My fears

Nothing had ever been said to me growing up. The only thing I was made aware of was the reason for the two vertical scars on either side of my abdomen where, at eight weeks of age, I had a double inguinal hernia repair. As far as I know, nothing was diagnosed at that time. I was just raised a happy energetic little girl, the youngest of five kids. My only fear when going through puberty was starting my period in the middle of one of my classes at school. When that time never came, I attributed it to the fact that I was extremely active in sports and could have possibly been amenorrheic. I still find it hard to believe that my Mom never once asked me about how I was doing, or if anything was wrong. It was just left unspoken. After meeting with my sister's doctor, it was decided that I should see a 'specialist' in the field of gynecology, so off to the "big" city of Portland I went with my Mom. Not once did anyone take the time to explain to me exactly what everything meant, and I was never presented with the opportunity to talk with a counsellor. I was confused and ashamed, embarrassed that I was somehow less than 100% "female", and incredibly scared of the proposed "exploratory" surgery, required by the doctors, to see what the problem was.

Post-surgery

After the surgery, which was termed a "gonadectomy", I woke up to the gentle touch of my doctor's hand on my arm. He briefly explained what to expect over the next couple of days, and reiterated that I was now 'sterile' and unable to conceive children. This sent me into a downward spiral emotionally and I spent the next few days alone in my room, with very few visitors, trying to make sense of everything and understand what had happened to me, and WHY? I remember lying in my bed, trying to figure out why so many doctors and medical students were filing through my room. Evidently they had never seen a 190cm tall woman before!

My relationships

As much as I wanted to forget about my condition, I began searching for any information I could find on 'testicular feminization', as it was called then. I found it in a volume of the Merck Manual for Physicians, located at a local bookstore. There, in two paragraphs, it described the condition and I read it over and over, acutely aware of anyone within fifteen feet of me who might catch a glimpse of the subject matter. Up to this point I felt "normal" in terms of gender, and never once doubted that I was a female, albeit an athletic and extroverted one. I did however have difficulty in coming to terms with the chromosome thing.

I had established intimate relationships with a handful of men and was actually seriously dating for the first time in my life. I loved the attention I received because of my physical stature, and had no problem meeting and establishing relationships with really wonderful guys. It was right in the middle of a relationship with a college football player when I met the man that eventually became my best friend and husband. He loved everything about me and he somehow managed to "overlook" the fact that I was seven centimeters taller than him! Telling him about my condition was one of the most difficult things I had ever faced, but he was so reassuring and supportive of me, and praised all the "unique" features of my body. I consider myself quite fortunate to have met someone who was able to see past the external features, or at least the less-desirable ones, and love me for who I really was.

Support

Having visited the AIS Support Group website in early 1998, I discovered there were several women who lived locally who were members of the support group, and who also had experienced all the emotions and embarrassment associated with having AIS. I immediately printed out the contents of the website and brought the stack of papers home to read. I also sent an electronic message to Donna, which led in a two-hour phone conversation with Sherri, who welcomed me into the AIS Support Group with open arms and a warm heart. Soon I was reading the back issues of the AIS newsletter, laughing at some of the stories, crying at others. I then decided that joining this amazing group of women, all of whom had been touched by AIS, was what I needed to do. Twenty-two years have passed since my self-diagnosis of AIS, and I can honestly say that it has been an interesting and enlightening experience. I now understand that coming to terms with AIS, learning from it, and sharing my experiences with others has helped me to accept my body the way it is, and celebrate its uniqueness. Meeting other women with AIS is just about the greatest experience I've known.

Big sister

At a recent U.S. meeting, I met a young woman who reminded me of myself 20 years ago, struggling to come to terms with AIS and very afraid. I recognized the fear in her eyes and reached out to her. We immediately connected and became very dear friends. I am proud to be her AIS "Big Sister" and I am so thankful that we met. Having her as my "Little Sister" gives new meaning to my life. Attending the annual support group meetings gives us the chance to hear how others have dealt with the challenges of living with AIS and see with our own eyes what an interesting, intelligent, talented, and beautiful group of women we truly are.