(This post is written by Kailana, who is intersexual. Here, she discusses the impact of the intersex diagnosis and her experieces as an intersexual. She is an upcoming guest on the HealthyPlace Mental Health TV Show this Tuesday, Nov. 17, 2009 at 7:30p CT, 8:30 ET.)

Experiences as an Intersexual

Gender Confusion

When I first realized I was different is a very hard question to answer. Mostly because my early medical life as a young kid was confusing. Too many doctors appointments out-of-town and out-of-state that I look back on and only remember crappy memories. Too many physical examinations and odd comments and questions. I ended up with a life as a kid and teen only being confused about what I was because doctors and parents kept asking me one question over-and-over: “are you happy as a boy?”

The answer was simple, I am not a boy and apparently no one understood what those few words meant. I ended being ignored and while I looked like a boy sort of, I did not feel it.

Diagnosis: Intersexual

I cannot really explain myself better than this. I did not know I was intersex or even what intersex was until I was 22 years old and diagnosed with Adrenal Genital Syndrome and later with a XY/XO Karyotype that was explained to me to be Turners Mosaicism.

I hope that doesn’t confuse people but my diagnoses were in 1993 and many people make the mistake of assuming I am saying I am a Turners woman. Which I am not. I am an 45XO/46XY Mosaic Assigned male that is a true hermaphrodite by gonadal developement with some Turners features with Adrenal Genital Syndrome which is usually called Congenital Adrenal Hyperplasia now adays. I have no official diagnosis for the Form of CAH I am affected by, although 17B is the most likely.

This is second and third-hand information, ie, this is a judgement by me based on information provided by others. I am still waiting for that first-hand official diagnosis that seems to be eluding me. For the last 16 1/2 years, I have been stuck with a XY/XO karyotype and Adrenal Genital Syndrome DX with no clarification or validation that both diagnosis are in fact correct.

The Impact of an Intersex Diagnosis

The intersex diagnosis, in 1993, pretty much destroyed what little life I had held onto. I lived as a guy. I served in the military for four years where I was diagnosed as being intersexual and left the service. Then I came home looking for answers and found none.

My local medical records were purged after I came home in July of 93; thanks to my mother. I have now spent 16 years looking for more information and ended pretty much being treated like crap by all the doctors and medical staff I have encountered because of the standards in place for treatment of intersex people. The medical standards used for decades has destroyed my faith in doctors.

Acceptance of Intersexuals and Intersexualty

The staff of the HealthyPlace Mental Health TV Show asked for information about family and society acceptance and I will make it clear that family can be the worst people to rely on when they are ashamed of what they have allowed doctors to do. I hope people understand that, in society, I am generally well-treated, it is the family issues of acceptance and the medical issues with acceptance that are difficult to live with.

Medically, I am treated or I should say not treated because the provisions of HIPA allow doctors to withhold information that they believe could be damaging. HIPA laws are being misused to hurt people like me who need answers and fair treatment in a so-called society that is supposed to be humane. Unfortunately, the medical world is not humane. The medical practitioners and their practices have contributed to more damage and harm to the entire intersex community than they or their forefathers could have ever understood would happen.

My apologies, but I am a well-versed Intersex activist who understands extremely well how crappy of a life a person can have when it is doctors and family who are hurting people, when they should be helping them.

I will close with saying that without my friends open, loving acceptance of me, I would have no life at all. See society is ready and willing to understand and accept people as Intersex. The medical world needs to open up our records and to share with the world just how varied humanity actually is. I will say that, hopefully, those with some clout do themselves a favor and ask for our permission first before sharing information about us, so that no additional harm is done when we find out that the world is being shown us when no one else will acknowledge who we are.

I hope this helps, although I sort of doubt that people will understand. An intersex diagnosis only really matters when those with the ability to understand it actually acknowledge them. Otherwise an intersex diagnosis just makes life difficult when no answers are available to explain it.

About the author:  Kailana is an Intersex activist.  She is 39 years old.  She’ll be a guest on the Tuesday, Nov. 17, 2009 HealthyPlace Mental Health TV Show on “Being Intersexual and What That Entails.”