Guest Post: Insight into the Lives of the Intersexed
Editor’s Note: You may remember Amy’s last guest post about the Invisible Intersexed Community. Next, she tackles what it feels like to be diagnosed as intersexed (with a female identity).
There are some things about being intersexed that straight-gendered people wouldn’t fully understand because they will never have these particular combinations of experiences themselves. I am going to provide a little insight into our world, to give some understanding of what intersexed people experience, including some internal feelings and the interactions with the people in our lives. Although there are several intersexed disorders of sexual development that affect people, my perspective in this article is coming from an intersexed female born with Complete Androgen Insensitivity Syndrome.
Frequently, we start our journey feeling alone and scared. If we were diagnosed as intersexed as a young child, many of us were unaware of our diagnosis until our families felt we needed to know. Most of us learned of our diagnosis around the time we were supposed to start puberty because we were told that we were not going to get our period. Some of us were not diagnosed until after our friends reached puberty because we did not get our period like our peers did and went to the doctor to find out why. Learning this information about yourself is shocking because you automatically find out you are different and assume this difference is a negative thing. The information about our diagnosis is something we keep a secret as a way to protect ourselves. We don’t even talk about it, even with our loved ones and closest friends, because if this information got into the wrong hands we could potentially be ostracized for something we have no control over.
An identity crisis can arise because the person you once were is now all up for questioning, even if you were confident in yourself before. If they dreamed about getting married and getting pregnant with a partner, this dream may be shattered once they learn they have no uterus. Not to mention the perplexities of finding yourself outside of the gender norm. Each individual person has to decide for themselves what being intersex means to them. Do I feel male or female or want to be categorized in-between? Am I gay or straight? If I have male chromosomes and I am in love with a male, does that make me gay? These are all valid questions that may be resolved over time.
Counseling is helpful to work through these issues, but it isn’t always offered directly. We find out quickly we have to advocate for ourselves, even when working with our doctors. Many doctors are not specialized in working with intersexed people. Some do their best with examinations and hormone replacement therapy, but other doctors are still uninformed and quite ignorant about our care. We are often put in a place of outing ourselves to nurses and residents every time we step into a doctor’s office when we are asked “when was the last time you had your period?”
As years go by, we get reminded time and again about our differences. Sometimes it’s the small daily reminders like when we wake up and take our estrogen pill. Other times we get reminded when friends or roommates commiserate about getting their period, when we receive invites to baby showers, when we attempt to start intimate relationships. Dating is hard enough for straight-gendered people so imagine if you felt you had a secret to divulge, hoping the person you liked would stick around after you tell them. Some of us never overcome this obstacle because it’s scary as hell. Many of us have delayed dating until we gained confidence in ourselves again. But what if we had this confidence at an earlier age?
We also have to become educated about our diagnosis, so when we do need discuss it with other people we know what we are talking about. It is a learning process, and a lot of people in the general public do not understand right away what you are talking about, so we also have to be prepared to give them resources to go back to later. Thanks to the internet, recent generations of intersexed people were able to educate themselves about their diagnosis online and were able to find support groups and resources.
Connecting with a support group can be a turning point for us. Instead of feeling isolated and scared, we can now reach out to each other and recognize we are not the only ones we know who were born this way. The dreams that were once shattered after the diagnosis can now slowly get pieced back together again. We can see how other intersexed people have maintained loving relationships, even how they added to their families through adoption. What once was our secret to agonize over is repeated again by other intersexed people as their experience until it becomes normalized and life becomes more hopeful. The most exciting and overwhelming experience can come when you actually meet another person who was born just like you!
With all of these supports in mind, we would like to partner with the doctors, social workers, and psychologists, who are treating the newly diagnosed and their families so we can offer them the education and support they need right away. We shouldn’t expect them to have sought out these resources on their own because it only assumes families will take action to find resources and not fall through the cracks. Some doctors may be reluctant to having us there as a resource for families, but we know from personal experience that early support and intervention is key for an intersexed person to getting to a happy place in their life. Not everyone is born into a supportive network, and our community believes if we have an early intervention and the opportunity to support the intersexed person and their family, it can resolve some of the negative aspects of the diagnosis earlier.
Life as an intersexed person isn’t always easy, but with the right support we can live full lives and flourish. Many of us are well educated, have supportive families, and have started families of our own through adoption. If you happen to personally know one of us, you may even forget about our diagnosis and just treat us like regular people, because that is exactly what we are–human beings. We are human beings who have overcome remarkable hurdles just because we were born outside the gender norm.
Amy Buzalsky is a social worker who works with cancer patients in Iowa. She enjoys gardening, spending time with her dogs Tyson and Bailey, and tandem bicycling with her husband, Leo.
Amy, thank you so much!
Thank you for writing this and for being awesome. :)
Thank you Bob and Amy! I attempted to generalize an experience that can be complicated, but after meeting many other woman with CAIS, we have bonded over similar stories. Thanks for listening!
What I (as a trans-feminine person) appreciate especially about this and your previous article is how you’ve brought clarity to both your feelings and experiences, seeing as all too often similarities are clumsily drawn between gender diverse people and intersex people that conflate and erase differences. You articulated for me some of the differences that are distinct aspects to intersex people’s experiences, and improved my own understanding — so in short, thank you, Amy, so very much for writing this.
Thank you for such a thoughtful response! I put a lot of time into this article, because although I am writing for myself, I feel as if I am representing all of the intersexed people I know so I want it to be as accurate as possible. Thank you!
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