Friday, July 22, 2016

Opening Up About Being Intersex

Photo By Lynnell Stephani Long
This summer (July 14-17) I attended a conference in Denver, Colorado put on by the AIS-DSD Support Group. This conference offers support and education for people born with intersex conditions- myself included. This was now my fourth conference with AIS-DSD and my second year as a board member to help plan the youth track.

There was once a time when my Intersex condition brought much anxiety and turmoil to my life. By being born with Complete Androgen Insensitivity Syndrome (CAIS), which means I have male (XY) chromosomes but was resistant to androgens during prenatal development and developed as a female. There are certain effects of the condition I had an easier time to cope with than others such as not having my period and I was able to cope with not being able to have my own children most of the time. But the underlying secrecy and shame that comes with being intersex can be difficult to overcome. Most of the anxiety I experienced arose from finding a balance between secrecy and privacy in disclosure to others, dating and disclosure in intimate relationships, and dealing with doctor appointments.

My parents found out I was intersex when I had a hernia when I was an infant. My gonads (under developed testicular tissue) came through and the doctor chose to put them back in until puberty. Many families are told they need to remove the gonads right away once they are discovered because can turn cancerous (which in many cases is putting the cart before the horse). Cancer is a scary word for these families, so they typically comply with the doctors to keep their kids safe because they are scared. I did have cancer as a teenager, but it was unrelated to gonads. When I was twelve, I was diagnosed with Hodgkin's Disease (lymphoma). My gonads were removed during a cancer staging surgery at that time, and I started on estrogen to continue with female development. I was told as a teenager that I have XY (male) chromosomes at one of my doctor appointments, but it got lost in translation with me. No one explained what it meant or said anything about Intersex. I was focused on cancer, chemo, and living my life.

As I entered my 20's and with the help of the internet, I looked up my diagnosis (CAIS) online. By this time I was entering my professional phase in my life, and have graduated with my masters in social work. I have already survived cancer twice, been volunteering with oncology camp, and graduated with my masters in social work. I spent a lot of effort coping on cancer survivorship and it was time to start delving into CAIS. I was quite shocked while searching Complete Androgen Insensitivity Syndrome and finding terms like hermaphrodite, intersex, and medical pictures of lines on people's faces. The most helpful information I found was for a support group and I contacted them right away.

Being apart of the online support group put me in contact with many other people who were born like me! I felt comfort being able to discuss my issues and concerns and ask questions about being intersex within my community. It took a few years after I joined the support group to finally met someone in person, and another few years until I attended one of their conferences. Besides the fact I was committed to volunteering at oncology camp for so many years, I wish I would have gone to one earlier!

My first conference experience was in Boston and it was full of anticipation, excitement, and anxiety. My husband went with me and we made a vacation out of it. One of my immediate observations was that it was difficult to actually pick out who the intersex people were attending the conference. Leo and I were often mistaken as parents of an intersex child, and I would have to point out that we were there for me and it was my first conference. This conference was also the first time I was able to sit down with my peers and share my story from beginning to end with people who have had similar experiences and understand them. That was a powerful experience!


We had a great time at the 2014 AIS-DSD conference in
San Francisco and seeing the city and attractions!
After Boston, I invited my parents to attend the next conference in San Francisco. I felt it was important for them to meet other intersex people and family members! We made a vacation of out it and saw the attractions of the city. I then attended conferences in Cincinnati in 2015 and then Denver in 2016. This time I was on the AIS-DSD Support Group board who works to plan the conference. I was proud to work with such an intelligent and dedicated team who were committed to putting on a supportive, educational, and diverse conference for all who attend.

You may be wondering why am I making a big deal about being intersex? We live in a world of gender reveal cakes and where many people in society are threatened by gender diversity, coupled with a rocky and inconsistent relationship the intersex community has with medical professionals. In short, these instances have perpetuated fear and shame in personal relationships and societal perceptions of intersex. We have become invisible in society. Personally, this has made it difficult for me to discuss intersex within my family, be open about it while dating, or be public about it.


with actress Bailey De Young
from MTV's Faking It.
In recent years the tides have been changing. The intersex community has been growing and gaining more strength within itself and society as a whole. In media, there have been intersex characters integrated in books and even TV shows. Recently, MTV had a show called Faking It where one of the main characters, Lauren, was intersex. The show worked as a team with individuals who are intersex from InterACT to develop the character and authentically represent intersex within the plot. Watching this show and seeing Lauren reveal herself to her friends and how that shaped her relationships was very empowering. I would have loved to have that kind of media representation when I was a teen.




There is still much progress to be done in the awareness and rights of the intersex community. But I have made enough progress to let you all know that I was born Intersex and I am OK with it. Because I was born intersex, I have become part of a wonderful and loving community who supports me. I have made an impact to the intersex community by being on the AIS-DSD board. I got to travel to new cities and make new friends. The benefits have started to outweigh the negatives at this point. I am done letting secrecy and shame hold any space in my thought process and replace it with positive thoughts, love and compassion.



My partner in crime in life
Site seeing after the Denver Conference

I would like to end this by thanking all of my friends who have been there for me at different points of this process, my family for loving me for who I am, and my husband for accepting me for who I am. I appreciate your continued love and support! I wanted to write this blog out of a sense of freedom for myself and education for the general public. Intersex issues are complex, and this was just a small piece of my experiences.





We Are Much More Alike Than We Are Different


AIS-DSD Conference Denver 2016 (photo courtesy of Lynnell Stephani Long)

2 comments:

  1. You are amazing and such an inspiration. Thank you for all you do in your support and advocacy. Xoxo Di

    ReplyDelete
  2. You are amazing for exactly who you are!! Thank you for opening up and sharing so much about yourself. <3

    -Emily Ferraro

    ReplyDelete