John's Story

[Received March 2006]

In January 2003 the UK group was contacted by a man, living and working in Eastern Europe, who was making enquiries on behalf of his AIS girlfriend (a native of the country he was living in). He was anxious that she get more information, and the opportunity to learn more about her AIS and to join the support group. Amongst other things, we discussed the fact that many young women with AIS worry that potential male partners may not be able to accept their AIS, and that it is good for these young women to come to group meetings and see other AIS women there with their male partners.

He was hoping to bring his girlfriend to our Spring 2005 UK meeting and wrote (in Feb that year):

I would love to present to your younger group my story as I think it's important they hear the other side of things. I have a letter that I wrote to Anna many years ago which fully expressed my feelings and the hardships I went through in trying to understand AIS and ultimately I accepted all of this and my love for her prevailed... ....Would gladly do a reading of that letter at your meeting.

Unfortunately in the end he couldn't persuade her to come, so wasn't able to attend the meeting but in March 2006 he sent a presentation that included the text of his letter, so that we could read it out at our Spring meeting that year.

This is the text of his presentation:

Background

I fell in love with a girl with CAIS I met many years ago and I’ve always wanted to bring her to one of your UK meetings because I thought it important that she meet other women with similar intersex conditions. Either she could never summon enough courage to attend with me or she wasn't interested in attending with me.

By sharing my experiences, it is my hope to provide to other women with partial and complete AIS, a sense of self-confidence that a man can really love them and accept them unconditionally. If I could just change one life here today in this room or provide hope to many, it is worth having this letter presented at your meeting.

I fell in love with a woman. The woman in question was at that time 32 years old, but at 18 years of age, in 1990, was diagnosed with Complete Androgen Insensitivity Syndrome, still called Testicular Feminization in Eastern Europe at that time. Hormone replacement therapy was started shortly after diagnosis without any physical complications and what follows is an edited form of a letter that I wrote to her after we broke up. After the first break up initiated by her, I described to her what it was like for a man to find out that the person he is dating has AIS and what it felt like to love a woman with AIS. I think the letter describes well the types of things that go on in a man’s mind when encountered with the truth about AIS. It was a gradual process beginning with disbelief and confusion, moving to acceptance and finally to unconditional love. Names have been changed to protect the individuals in question.

Start of letter

Anna,

I’m writing this letter to you because I think it’s important that I tell you some things that will help you grow and will help you realize where I’ve been coming from over the past few years that I’ve known you. There is a lot of anger inside of me writing this letter so when you read it please don’t hate me. We are not together anymore, but I want you to know how I feel. Maybe that will hurt you, but that is not my intention. I just want to clear my head and my heart. The things I say may totally not be true in your eyes, but at least you know what was going on in my mind since we’ve known each other for a long time and with this letter I can be at peace with myself.

When you and I broke up the day after our argument, I accepted that. It took a while and it hurt, but I accepted it.

Our relationship starts

I met you many years ago playing volleyball. You gave me a smile from across the other side of the net and I made some flirting comments to you. There was an attraction by me towards you the minute I met you, it was your long hair, and your beauty that attracted my eyes first. Then I became Director of a local company winning an embassy contract and again I ran into you many times at your workplace. I left you some roses and notes on your work desk, but you were seeing your ex-boyfriend at the time and I knew that there was no chance for us to go out on a date so I never get to know you better. Then a few years later, I’m at an embassy ball and there you are again, and we danced together.

Years later, I see you again at a July 4th outdoor party and I’m thinking to myself, this is so weird. I’ve got to talk to her and get to know this person better!! So we dance a few times in front of the band on the grass and talk. We end up at a Cocktail bar, talk some more, get into a cab and go back to my place. We end up on my terrace under a star lit night kissing and caressing, then we somehow get on the topic of making love and I want to go and get a condom. Out of the blue you tell me that because you were born with a genetic defect you can’t get pregnant or have any children. I think to myself, OK that’s fine, but there is such a thing as sexually transmitted diseases and you don’t know who I was with, but OK you are adventurous. I give you a one-hour massage, we talk and we make love. I see a scar on your lower stomach and you tell me that it is there because the doctors wanted to check to make sure that you in fact couldn’t have children, you gave me no details. You also mention at the same time that you don’t have a lot of pubic hair because you shave. I’m thinking to myself, OK, fine, this might just be a one-night stand and it’s not a problem that you can’t have children, because probably this relationship will not go any further.

Later in the week, we meet for dinner, our first date and I see you sitting on the terrace of the restaurant smiling at me as I’m walking closer to you and I’m thinking to myself, this is weird. All of the times that you and I have met, and here I am finally going on a date with you, it felt like destiny fulfilling itself.

We continue dating for a few months and I had a great time being with you. Anywhere we went it was always fun for me and I always have good memories of being with you, ALWAYS, never any regrets. We always clicked, that’s how I felt and all of my friends noticed it too and thought that we were great together. I’ve never got along so well with anyone in any of my other relationships. I really had a lot of fun with you around. Never a dull moment that’s for sure. I didn’t think anyone could really understand the special friendship that you and I shared. But already then, you felt that you were still in love with your ex-boyfriend who you never got over, even after 5 years of not seeing or hearing from each other.

Over those few months together I’m thinking to myself "Man this girl is amazing" and we go out to a dance club with some of my friends, where again we have a great time and I tell you in open honesty that I think you were great to tell me that you cannot have children right from the beginning. You told me on the first date, which I really respected. I thought to myself "Man, this girl is really great for telling me this upfront". Suddenly, I’m faced with the fact that if our relationship would ever turn into something more serious, could I accept the fact that I may never have any children of my own? That was a hard one to swallow. I decided not to think about that anymore, as it was premature.

I seek out (and pass on) information

After we are into our relationship for a while, I am curious and decide to go on the internet to find out more about the genetic defect that you told me you were born with so that I could become more informed. You never told me the name, although you had been diagnosed. I e-mailed my doctor in North America and he gives me a few possible medical conditions based on what I told him, sparse pubic hair and the scar I saw on your abdomen. One of them is testicular feminization or AIS (Androgen Insensitivity Syndrome) that I plug into a search. I start to read. I didn’t know how to react. I started to read that women with AIS have very sparse or no pubic hair and only probably the scar in your belly button was the one where they checked to make sure you had no ovaries or uterus. The other scar was the place where they removed undeveloped testes from your abdomen to make sure they don’t become cancerous later in your life.

I absorbed the things that I was reading since I worked in a hospital for years, and confronted you on these things when we went shopping together. When I told you what I read, you admitted that you think this is what had happened when you were young, indicating to me that you were never properly informed about AIS and probably your parents weren't either. Maybe nobody ever told you the entire picture or truth. I thought to myself I’m not ready for this situation. Then I started educating myself more, asked you for one of your empty hormone replacement therapy pillboxes that you’ve been taking since you were young, you called it your “medicine”. I came up with more information. I find out that genetically you are XY chromosome, a male.

It was very difficult for me to swallow this and I think you can understand that if you put yourself into a man’s shoes. Especially since I had to find out on my own and got nothing from you on this, but now that I think back, I don’t blame you at all. As a matter of fact I don’t think you knew yourself the full extent of your condition with AIS because your parents never told you. I don't think the doctors in these East European countries told you or your parents the complete truth because when I questioned your mother once all she could say is that you had elevated hormone levels. I prepared for you a binder with all of the information I could possibly pull off of the internet on AIS to help you learn more, even though you were close to 30 years old. I found the AIS Support Group and a helpful woman who provided me with lots of information and I signed you up to get regular information on-line from the support group and bought you books on the topic and videos.

A while later, my doctor from North America comes to one of our parties and you and I find out more about AIS “together”. I stress together, because I don’t want you to think you are alone with this, I’m there to support you. At this point I have grown closer to you and spent more time with you getting to know you. For about one month, I’m faced with some very difficult decisions about whether I should come up with some reason to “casually break up with you” because this is far more than I expected or could cope with knowing everything that I learned myself through the internet, at least I thought that I knew everything, but I didn’t. It’s not my intention to hurt you with what I am saying; I just want you to know my feelings.

Having the right information and being able to share it with someone is very important so the binder I gave you discusses all options open to you and will help educate you on AIS and other intersex conditions. The binder was mine because after you and I broke up and you left to work abroad on a cruise ship, I was still learning a lot about AIS, I wanted to understand you better and why you sometimes do the things you do, but now I want you to have it and also learn from it.

Most doctors, especially in Eastern Europe, are not qualified to be able to treat AIS patients and they could do more harm to people than good. I also found out that they never tell their patients the truth and only tell the parents, if that, and let the parents make the decision to tell the teenage girl about her condition. This is very unethical and not right since the children usually find everything out on the internet or in the library later on in life when psychological trauma or damage may already have been done and is not easily reversible. If you read all of the binder, there are some health concerns with AIS that you should know about and try to prevent through regular breast and other examinations that only a qualified AIS-knowledgeable doctor should give.

Again, please read the entire binder for your own health and welfare, it will open your eyes to a lot of things and may help you understand things that you probably experienced in your life, but did not know anything about. I want you to know everything that I do because I think it will help you make educated decisions about some aspects of AIS and about future relationships when the time comes.

Also, I know you don’t talk to your sister, but there is a one in three chance that she herself can also be a carrier of the gene which means your niece (her daughter) may also have AIS and will only find out when you did. If you care about your sister and your niece, then you should talk to her, to get a genetic test for AIS done for her, so that she can be prepared to accept everything that happens to her if she doesn’t menstruate. They shouldn’t wait until then. They can find out sooner and prepare her sooner since she is at higher risk of having it. The binder also talks about the different tests that can be done to check if young girls have AIS or not. If she does have AIS, it's up to your sister to make sure that your niece gets the correct information from early on to be able to cope with this and know what to expect later in life.

Anyway, here I was educating myself to try to understand YOU better. It helped me better to deal with my feelings towards you and made me less ignorant. I realized that there are a lot of people out there with AIS like you and they all have their emotional and physical scars. Read some of the testimonial articles in the binder. I highlighted all the interesting stuff. There are also some excellent books on the topic that I ordered for you a while ago that I will send you once they arrive from the UK even if we never speak again. My point is, I felt alone. I could not talk to anyone about your AIS because it was not fair for me to do that to you. When you were on the cruise ship, I still sometimes went on the internet pulling up more and more interesting information and this whole process helped me also to better understand myself and what’s really important to me in a relationship. All of these articles and information I now hand over to you. I don’t need them anymore as we are not together.

Falling in love

Despite everything I read and learned, somewhere along the line I FELL IN LOVE WITH YOU. That’s right Anna. Can you imagine being in my situation for a minute, a healthy, fairly good looking guy, who has everything going for him in life, is successful, is honest and hard working, has a good sense of morals and treats people with dignity and respect, accepts that he is in love with someone with AIS? Again, I’m not saying this to hurt you, but am trying to make you see what was going on in my head and helping you to get into my heart and soul. Can you even begin to imagine what I went through during this time? I never spoke to you about your condition with AIS. I figured you probably didn’t care about it or didn’t need to be reminded of it. But after all of the articles I have read and the experiences of other AIS women, I believe now that it is exactly what we should have done, talk about it and you need to talk about it. I think it’s a time bomb waiting to explode, and sometimes I’m sure it does. But I don’t have the right to tell you what to do.

The bottom line is I accepted you for who you are and I fell in love with you for who you are. I always saw you as a very tough, unemotional, hard assed bitch who was not afraid to express her opinion or who always spoke what’s on her mind, no matter how bad mouthed she was. You put on a dress maybe once a year for special occasions and only wore make up and jewelry when you had to. That is the woman I came to accept and all the rest didn’t matter to me.

Breaking up

Back to my story. One day I show up to go running with you 15 minutes early and you yell at me that I’m early. I’m thinking OK, she probably had a bad day over something. We go running and you can’t stop bitching about me showing up early. One thing leads to another and it escalates into a fight and we both say some very hurtful things to each other. I’m the first to apologize at the end of our run. Next day we go to an art exhibit, we go for a walk on the river bank and you break up with me, you tell me you are going to work abroad in another country on a cruise ship and that you are not in love with me. After some time I accept this.

Within a month I decided it's time to get on with my life and started dating another woman while you were on the ship. I continue my relationship with my girlfriend, but still don’t feel the MAGIC.

Reflections

After you and I broke up, I made the decision that I wanted to help you and your mother in any way I can and be there for the both of you when times are tough and while you are on the ship. I did whatever I could and whatever she asked and whatever you asked because it was the right thing to do, not because I was still in love with you, but because I loved you and you became one of my best friends.

I wanted to be your mentor and guide to help you succeed in life where in the past life has treated you and your mom unfairly. You kept saying to me that you don’t know why I am so good and nice to you and why I spoil you so much. Let me tell you something, you are a wonderful girl, you have a great brain in that sometimes full-of-yourself swollen head of yours and you can be anyone that you want to be. Your lack of confidence in yourself will be your biggest downfall. Forget about your past hardships, your parents' divorce, your not getting along with your sister or dad, your condition with AIS and anything else that can hold you back from making a difference in this world and becoming successful. I know you can do it, the people that know you best know you can do it, so GO OUT THERE AND DO IT!!! Take a deep look inside yourself. Start doing good things, begin planning the steps to a successful future career and stable life.

I cared enough about you to spend a lot of my time researching your condition, that’s OK, I never regret the time invested in you. I gathered a whole bunch of stuff in the beginning to help me better understand you. I created a huge binder of research on AIS I gave to you. I’m almost positive that your parents and East European doctor have not given you the information you should have had when you were in the prime of your youth about AIS and there is nobody that can change that now, but it's not too late to learn as much about the condition as you can to help you deal with it, if it’s a problem for you. Maybe I’m wrong, maybe you already do know everything or maybe you don’t want to know anything. It’s your life and your decision and I’m not here to lecture you. I know that you will one day find the guy of your dreams again who will accept you for who you are. If he dumps you, then he didn’t deserve you to begin with, it’s that simple.

Thanks for letting me share my feelings with you and get everything off my chest.

End of letter

In this presentation, I’ve tried to share with all of you just a small piece of one person's life, two people’s lives and a man’s love for a woman with AIS. Many of you sitting in the audience today, especially any younger members, are probably thinking to yourselves, will a man ever be able to love me for who I am? The answer is yes, if you let him into your heart, if you are fully honest about yourself and AIS with both yourself and with him and most importantly if you talk about it and share your feelings with him about AIS rather than repressing these. Yes, AIS women are genetically male, but genetics does not define completely who we are. Life experiences, relationships and how we handle these make us the people that we are.

Anna returned from work on the ship. She stayed at home because her mother’s condition with cancer was getting worse and her mother eventually passed away some years ago. I stood beside her during this difficult time, her mother was all she really had as her parents were divorced when she was young and she did not keep in touch with her sister or father. She asked me if I will accept her back because after we were friends for long time, she felt she was in love with me again. My gut feeling was telling me not to take her back. But in the end, I did take her back and we spent three wonderful years together without any problems. Since I wrote the edited letter above, to Anna, we were together for almost 3 years. I renovated her flat, we moved in together, we were planning to get married and adopt children, and then my life changed from, one day to the next. She decided to run again.

I found out that she was emailing her ex-military boyfriend in Iraq for almost a year without my knowledge. They had not seen each other for 5 years, but she informed me she is still in love with him and that she needs to meet with him. All this despite the fact that just a month before she was talking about marriage and adoption to me and my friends. Her ex-boyfriend sent her an airline ticket and she left to see him for two weeks about two years ago. She felt she needed to do this. It’s the second time she felt she had to run from our relationship for one reason or another. Who knows, maybe it was me, maybe I knew too much about her, maybe she felt overwhelmed with the AIS stuff, or maybe she just never got her ex-boyfriend out of her system and felt she needed to go back to him. The result is she thinks she is still in love with him, after he already left her once, and they are making plans together for their future. We still keep in touch from time to time while she’s with him in North America. I think of her often and I do miss her, but she did what she had to do and did it before our relationship went to the next level which I am thankful for.

That is my story, that is our story, and by sharing it I hope that I could give something to someone.

If anyone wants to contact me with further questions around the letter, my feelings on how I coped with all this stuff etc., feel free to do so. Anything to help. They can contact me through AISSG UK.

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