Surgery• I had surgery when I was just three. I stillwish my parents were given more options. I
regret that I have a huge scar and no say about
what happened to my own body!
• Unconsented surgery on my genitals wrecked mysense of self and my confidence as a partner and lover.
• My parents weren’t told they had a choice. Always offer
a nonsurgical option. Surgery is a last resort for everyoneelse. Why should it be different for us?
• If doctors had been more honest about potential surgicalsuccess, my parents would have made different decisions
on my behalf.
• Do not tell us that only a medical eye could tell thedifference between a “normal” body and a surgicallyaltered intersex body. It’s devastating to hear andit’s completely untrue.
• Do not tell a child that surgery is the only
way for them to have "normal sex.”

Emotional Support

interACT Youthis a space for intersex youth to raise
their voices, share their stories, andchange the world. interACT Youth is a
project of interACT: Advocates forIntersex Youth.

• I need you to inform me about peer support options.
• Support groups offer a unique support that we can’t getfrom our doctor, friends, or family.
•Being intersex impacts me more mentally than it does
physically. Provide me with options for therapy.
• Joining the intersex community gave me a sense of
belonging and helped me to heal and grow.
• My peers were experimenting sexually while I was scaredof my own body. I didn’t have anyone to talk to about it.
• My parents never told anyone else, and their silence
affected my entire family. I wish they didn’t feel so alone.
Peer support groups and therapists are important forthem too!
• Make us feel truly comfortable sharing our feelings.
Encourage us to express ourselves.

www.interactyouth.org
www.interactadvocates.org
365 Boston Post Road Suite 163
Sudbury, MA 01776
info@interactadvocates.org
707-793-1190“Doctors need to be honest about thefrequency of failures andcomplications. The rosy picture thatwas painted for me couldn’t have been
farther from the truth.”- Sarah, age 20

What We Wish

Our Doctors Knew

interACT Youth“For most of my life, my doctors
knew more about my body than
I did. None of them ever took thetime to explain my condition tome in depth. I felt confused andalone.”-Ali, age 23

is a group of intersex
advocates in their teens
and twenties working toraise intersex awareness.

We decided it’s time we told
our own stories and spoke
Medical Exams
our truths. In 2012, we started• Brief the nurses and medical assistants who area conversation about whatgoing to work with me.

we wish ourdoctors knew.

We're sharing that withyou now, and we hope
you'll pass it on.

Communication•Don’t assume I am comfortable with the medical
term “DSD” versus intersex. Ask me what I prefer.
• Being intersex doesn’t mean I’ll have a certain sexual
orientation or identity. Don’t assume you know how I
identify, and don’t assume I’m confused about it. Just tellme the facts about my body.
• Don’t speak in absolutes, i.e. “This vagina will never besufficient for marital relations.”• Don’t patronize us by speaking to our guardiansinstead of us.

•Don’t ask me things that wouldn’t pertain to my body.
For instance, if you know I don't get my period, don't
ask me when I had my last period.
• Please know what you’re talking about. We
shouldn’t have to educate our doctors.

• Ask the patient how they would like the exam to go. It’sokay to give us some control.

• If we DO have to educate you ... listen.

• Engage with patients as experts on their own experiences.
• It's ridiculous to think genital exams wouldn't bother a child! Even
adults hate them!

• Don’t emphasize how rare this may be.
That just makes me feel more alone.

• Give us the option of who we want in the room with us. This includes bothfamily members and other medical professionals.

Disclosure• Be honest. I have a right toknow about my own body.
Secrets make me feel like I should
be ashamed.

• Don‘t stick your fingers up a child’s vagina if it’s not absolutely necessary.
• Don’t give a genital exam if it is simply for your own curiosity.
• Don’t ask young kids if they have questions right after they’vebeen shell-shocked from the genital exam you just gave them.
Give them time to process.

• I’ll end up doing my own research
online, and would so much rather hear
it from you.
• I wish that I had known about everythingat age thirteen, when my parents knew.
• Please don’t lie to my parents, or advise
them not to tell me about my own body.
• I’m not as fragile as you may think I am. I
can handle the truth!

• Help a child to understand the difference between astandard genital exam and molestation.
• Have a pediatric speculum nearby.
• Don’t take pictures of my genitals!

• My doctors told me I’d never meetanyone else like me - it turns out I’ve
met many!
• Do not treat me like I’m a once-in-a-lifetime
opportunity for you. This isn’t about you.

• Please don’t forget to remind me of the positive
aspects of my variation.
• Encourage us to email or call you if we have questions or concerns. And mean it.
“After many yearsof complications, I was referred toa doctor who was one of the finest
people I’ve ever met. She cared for me.
She would sit with me for an hour and justtalk ... What was I feeling? What did I want?
What worked and what didn’t? Because
she took the time to get to know me, it
made all the difference in the world.”- Monica, age 26