Terhi's Story

[Received Sept 2001]

Here is the small history of me. I was born in 1979, as a girl, childhood was okay, thu I have several allergies and my asthma was diagnosed in 1987, and in 1990 was found I have hemophilia, a bleeding decease (is this written correctly?), but it is so minor that it doesn't really effect in normal life, only in surgeries.

When I was on seventh grade, 92-93, I had a lots of pains in my stomach and then started the running from doctor to doctor. Some said I'm just afraid of school, some said the periods were about to start, that was checked in a small operation, they said it wasn't the periods, but everything was o.k. But it wasn't, I couldn't be at school, the sitting was too painful. Then I was in pediatric hospital about six weeks. That time was found there was something wrong in my lower-back, two lowest vertebra (?) were joint together, but after all it didn't cause the stomach trouble.

Then on the last week of that hospital period my doctor examined my stomach, he accidently find two "lumps" on my lower stomach. I was rushed to the ultrasound and to bloodtests and to specialist... Then we had a meeting with me, mom and my doctor. I was told the lumps were gonads, testes, and I didn't have ovaries nor uterus, and my chromosomes were 46 XY. I was sent to endocrinologist, and 1994 I was operated three times, were gonads were removed and vagina constructed.

Until 1998 I tried to study, but I was allways sick. (I didn't have those aches I used to, they stopped when the gonads were removed. I was told, that those doesn't cause any pains, but then  they said that they were difficult to remove.) I was allways tired, and my fysical condition was bad, I had only been lieing for years.

In 1998 I started having panic attacks. First everybody thought it was the asthma. After a while was discovered it was mental. I went into the hospital. When I was telling my background they kept asking what do I think of my sexual differencies. I kept wondering why do they allways go back to that, "yes, I'm sad that I can't have children but thats it. But the it is all the sickness I can't deal, I'm afraid of being with people, I don't have life." I was in that hospital for two months, it helped me a lot: I talked and talked, I first time in my life could tell anybody that I hate being sick, that I was afraid of school and people, that it felt bad when my dad was drinking (he hasn't been drinking for eight years now!). After that period I moved to place called Haukkala "the Place of Hawks" that was ment to mental patients between 18 and 24, it was a place where they could learn to live on their own. I lived there two and a half years. I loved that place, and I've met some of my best friends there.

First when I moved there I just stayed in my room. But in first days I get to know others. And I was shocked: they liked me. And the stuff of the place liked me. It was first time in my life I was dealing with people in my own age, and I was doing great. I started to go to city with my friends, I loved shopping, eating out...And I found out I was beautiful: I was six feet tall, big breasts, quite thin, long red hair, and no hair elsewhere. I got my first kiss...

And then I was invited to the hospital, where I'd been treated. My own nurse said afterwords that I was in shock at the time. Well I get there, was in a small surgery, and came back. And nothing was the same again. I was full of anger and rage. I didn't know why. I started drinking. One day I noticed the little scars on my hands, where the canyl (is it the correct word? the thing with tube, where the medicine and fluids goes to vain) had been in the hospital. I started scratching it. Then I don't remember anythning. The next thing I remember I was staring the table and my hand, blood everywhere. Then I cleaned it all up and went to bed.

I didn't know what was with me. What ever I did, I felt bad. I started dating, I lost my virginity, I did all I could to change the way I feel. And I felt worse and worse. One night, it was in February 99, I had taken too much sleeping pills and Diapam, I cut of my hair and scratched my body with nails everywhere I reached, specially the scars of my stomach.

In august 1999 was a turning point. I got to psychiatric award because I couldn't be sure what I do to myself. There I got some wrong kind of medicine, and I fainted. My blood pressure was 70/50. After that I knew I wanted to live. It came to like a lightning: I'm different than others, and I hate it and I don't want it. It was first time I hated being CAIS. For two weeks I couldn't eat or drink. I couln't go to bathroom without wanting to throw up.

But after my personal hell things started to get better. I started crying first time in year. Everything get out bit by bit, slowly but it came. And for the past two years I have been better and better a day by day. Last September I moved to my first own home, and for the first time in ten years I was in school the whole spring! And it felt great!

Since May I've wanted to know more about AIS people, and I've started to learn about my own sexuality. I feel mostly woman, but there's a lot of me that isn't woman or a man, the things that separates me from woman separates me also from man. I've said it's something beyond, and that's propably intersexuality, I haven't defined it yet.

In Jan 2005 she wrote again with an update:

I've been very silent for too long a time, I'm sorry about that. I've been having rather rough times dealing with my problems, but now everything seems to be going well. As you might remember, I was institutionalized for several years because of depression and anxiety disorder (I don't now which are the correct English names), and even though I've been living on my own for several years and been off psyche medicines for three years I'm still a sort of convalescent. My mental problems were mostly caused by several, long periods of times when I was sick at home or at the hospital in my childhood and youth, and because of that I got isolated from "normal" society. Because of my illnesses and surgeries I developed a very difficult relationship to my body over the years.

As I wrote above now things are well: I'm living my dream, I'm studying theoretical physics and astronomy at the University of Helsinki. I'm enjoying it very much, even though studying is hard work and it is taking all of my time. Mentally I'm doing quite well, I don't have energy to do everything I want, but who does.

I've been also working with the intersex issues. I've realized I'm not having problems with this condition, but I'm greatly traumatized by vaginoplastia done when I was 14. I've been trying to reach finnish intersex people to create a support and/or patient rights group, but so far results are quite poor, I know only three finnish intersex persons (including ____). I have worked with HLBT people and organizations in Finland, at so far it has worked out just fine. I've been educating health and welfare students and professionals, and they have been very interested about the matter - it seems that hardly anyone in Finland have heard about intersex conditions.

What I tell in my education to audience is what intersex means, which are the intersex conditions, what the current medical treatment is, what are its lacks and which part of it I find should change entirely. My opinions are pretty equal to ISNA's patient centered model, unnecessary surgeries should be stopped, to parents and personnel must arrange a possibility to talk and understand the condition, and fix the current thinking that this is a terrific anomalia, when in reality it really is rare, but o.k. condition. (And naturally, some parts of the intersex conditions require specific medical care.)

Last fall I participated a documentary film about my life and how I see and feel intersex issues. It is now under editing, and I'm looking very much it to be finished. Film director is my friend, and she is also doing her philosophy pro graduate work (I really don't know what this is correctly in English - she is at a Master's program-line) called something like "Affects of gender dicotomy in a society", and she is using intersex issues on it, for example: the dicotomy is so narrow in some parts, that when a (intersex) person can't fit on it, it causes very radical action. Oh, this sounds so horrible when I try to translate it. I'll send you an English abstract when it's done, if you wish.

I've done an official complaint about my vaginoplastia to Finnish Patient Insurance Centre (http://www.vakes.fi/pvk/english/index.jsp). They decided at their first decision that harm wasn't done, because everything has happened as protocol says, eventhough I specificly complained about the protocol. I'm complaining aboug the decision. I've decided to complain as many time as I can, someone will see eventualy human right about this matter.

Well, again, I'm sorry I haven't been in contact. I've been busy to building up my life, and intersex issues (surgeries) are time to time so sore I have to put it aside for a while. Besides, I've always found it very difficult to express myself in English. And a little joke to the end: I'm Finnish, and Finns are famous they don't talk, particularly about their feelings. And I'm physicist, I'm not familiar express my self other than in mathematical formulas.

I wish You the Best New Year 2005!

PS. I don't think I've ever told you that I admire your work with AISSG and I really appreciate all the help I've got from it. The basic fact that AISSG exists has helped me a lot, it has been good to reed about the condition with the language I comprehend, the personal stories have been particularly important. The group meeting was a real eye-opener in some parts, it really cleared to me that which were my problems conserning the condition itself and which problems were caused by the medical treatment. Before the meeting those were merely one big unidentified fuzzy problem, and I didn't knew how to start handling it.

So, this is my quite clumsy way saying thank you. :)