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Peer support a lifeline for many with DSD
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I recently returned from the annual conference of the Androgen Insensitivity Syndrome Support Group USA.
I went as an ”expert,” to share my knowledge of the legal aspects of living with differences of sex development (DSD). However, I learned much more than I taught. I wish everyone who provides care to people with DSD could go to this meeting. Because that may not be possible, however, I thought I would use this column to share some of the lessons I learned.
A welcoming community
I have spoken with clinicians in the past who hesitate to refer parents of children with DSD to support groups out of fear that these groups are made up of “angry activists” who will alienate parents. Nothing could be further from what I experienced when I walked into this conference. There were people there from all over the country and from all walks of life. Long-time members clearly had a sense of homecoming; newcomers were received with open arms, and I saw their expressions change from apprehension to relief as they realized they finally were not alone.
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Repeatedly, I heard people say, “I asked for a support group, but my doctor told me there were none out there.” This comment came regularly from adult women with DSD of various ages, but also from parents of girls who were recently diagnosed. Although this may have been true at one time, it is no longer so.
The Androgen Insensitivity Syndrome Support Group USA (AISSG-USA) was founded in the 1990s, and it now serves women with various DSD, including complete and partial androgen insensitivity syndrome, Swyer syndrome, Mayer-Rokitansky-Küster-Hauser syndrome, 5-alpha reductase deficiency and others. The parents’ group affiliated with AISSG-USA welcomes parents of any child with DSD. (There are also several other national support groups, some focusing on specific conditions.) There were more than 100 adult women with DSD at the conference, along with families of about 20 girls, and many more are affiliated with the organization who could not attend. Plans are in the works for regional meetings as demand grows.
Counteracting isolation, shame
Many people with DSD go through much of their lives without meeting another person who shares a similar condition. Based on popular representations of people with DSD, they imagine those with DSD as lonely and tortured. What I saw at the conference was a very different picture of life with a DSD. I met women who were successful artists, teachers, musicians and business owners; who had partners or spouses; who had children, nieces and nephews. Certainly, many of them discussed times in their lives when they were confused or isolated. The turning point in many of these stories was when they learned the truth about their conditions and met other people like themselves. There was a great deal of pain in some of their stories, and coming together with others who understood was a critical part of the healing process.
Perhaps the most moving part of the conference for me was seeing the positive effect that joining this community had on teens with DSD and parents of children with DSD. There were parents there who had only learned their child’s diagnosis weeks or months ago. To be sure, they were working to reorient themselves after learning this unexpected information about their children, but they were hearing about how they could help their children navigate life from women who know firsthand what it is like to grow up with DSD. Parents were conferring about their daughters’ testes and options for managing cancer risk, hormone therapy, and how to support their daughters’ decisions about whether, when and how to create or enlarge their vaginal openings — all topics parents must be comfortable discussing if they are to support their children with DSD through adolescence.
The teens and young adults quickly bonded with each other and were glad to have a safe space to ask questions and talk freely about their conditions. Near the end of the weekend, one young woman told her story to the entire conference. When she was done, the whole young adult group came up to the podium to hug and congratulate her.
Patients are sometimes experts
Besides affected women and girls and their families, there were medical experts and other professionals there to give information. Many of the attendees had a sophisticated understanding of the medical issues and grilled the doctors about the latest in HT and other medical issues. Specialists with expertise in DSD are few and far between, and those with DSD often must be experts in their own care.
Whether they were well-versed in the medical issues, however, the women at this conference reminded me that people affected by DSD are the experts on their own experience. They have the answers to questions that stump many professionals, such as “How do you tell someone you are dating?” or “What do you say if the babysitter has questions?” or “What do I do if another girl asks me for a tampon?” They know things about the medical encounter that doctors do not because they experience it from the other side. They know what life with DSD is like outside of the doctor’s office.
Just before the conference ended, someone noticed that the Wikipedia entry on Androgen Insensitivity Syndrome was illustrated by a medical textbook images of a naked woman with her eyes blacked out. Many of those with DSD hate those images, finding them demeaning and offensive. For many, such pictures also remind them of painful experiences in the doctor’s office, where they felt exposed and reduced to a specimen. So the women at the AISSG-USA conference decided to replace the picture with a more dignified one that showed real women with androgen insensitivity syndrome, looking at the camera and proud to be who they are. It is bookmarked on my computer, a postcard from my journey.
Anne Tamar-Mattis, JD, is the Executive Director of Advocates for Informed Choice, Cotati, Calif. She welcomes responses to this article at: director@aiclegal.org.
For more information on the Androgen Insensitivity Syndrome Support Group USA, please visit: www.aissgusa.org.