How to Cope with Being Intersex

Being intersex or having DSD (differences in sex development, i.e. conditions in which reproductive or sexual anatomy don’t seem to fit typical definitions of male and female) is routinely misunderstood. About 1 in 1,500 to 2000 children is born intersex—it's more common than having cystic fibrosis, and almost as common as having red hair. Perhaps because there are so many different conditions that can lead to DSD, the intersex community has only recently began to gain its own voice in the public sphere. To cope with any difficulties you have with your sex identity, the first step is to connect with other intersex people. As well, you should care for yourself, demand good treatment from your friends and family, and get the information you need from your doctors.

Participating in Your Community 

1.   Know that it might be hard. Being intersex – or getting a diagnosis as intersex – can be hard to face psychologically and socially. Many people aren’t aware of DSD or hold misconceptions about intersex conditions and people. You may face ignorance, and you may also see prejudice. No matter what, though, remember that you aren’t alone.

• You might encounter misconceptions about being intersex, for instance. Some people may assume that being intersex affects sexual orientation, or they may not know that most people who are intersex are happy with their assigned gender. Worse, you might also face forms of discrimination or harassment.
• Some people with intersex conditions have specific medical challenges. Many also struggle with feelings of isolation, shame, anger, or depression.
• If you choose to share your DSD with friends and loved ones, don’t be surprised if they are curious or want to ask questions. How much you disclose, of course, is up to you.

2.   Meet other intersex people. The most helpful and healing way to cope—and thrive—as an intersex person is to talk with other intersex people. You can share a common experience, get advice, and enjoy the sense of camaraderie. Many intersex people find best friends and even partners through meetup groups and intersex conventions.

• Join a local group. Contact hospitals and advocacy groups for meetup groups in your area.
• Chat online. There are many forums to connect with other intersex people.
• If you're under 30, join a youth group.
• Find support groups for people with your specific form of DSD.
• Find a spiritual community that supports you. Whether online or elsewhere.

3.   Join LGBTQI communities. Although LGBTQ groups are meant to address gender identity and sexual orientation, rather than sex identity, there is often an overlap in the needs of LGBTQ and intersex people. You are likely to find allies in the queer community, and you may even meet other intersex people.

• Many intersex people transition due to being assigned the wrong gender at birth.
• Many intersex people are gay, lesbian, bi, or queer.
• Some intersex people identify as third gender, genderqueer, or agender.

4.   Advocate for others. Get involved with larger organizations so that you can get connected with social movements that promote visibility, patient-centered care, and justice for intersex people. Join a group for youth.

• Contact groups that specialize in people with your form of DSD so you can provide mentorship and support for your peers.
• Be open and unashamed about your sex if you can. This is one grassroots way to increase intersex visibility.
• Speak up. When you hear nonsense being spouted about sex, gender, and intersex people, speak up. Once you've learned the facts, teach the facts.
• Intersex conditions are "invisible." That is, most people aren't aware that anyone around them is intersex. If you feel safe, mention that you are intersex.

5.   Enjoy the work of intersex artists and thinkers. Support your community and get inspired by all the brilliant work intersex people are doing in the world. Read the writing of people like memoirist and poet Thea Hillman, or experimental poet Aaron Apps.. Check out the charming animations of Emily Quinn. 

Living a Good Life

1.    Define your own gender. It can be hard to know how to define your gender when most definitions of gender identity take sex identity for granted. Even if you had the good luck of being assigned the right gender at birth, or if your parents and doctors allowed you to define your own gender when you were a child, you may find it worthwhile to think about what gender means to you. Many intersex people do not identify with the gender they were assigned, and choose to transition.

• You may identify as a transgender intersex person, meaning you identify with a gender other than the one you were assigned at birth.
• You may define yourself as ipso gender, meaning you are an intersex person whose gender was correctly assigned at birth.
• Some intersex people prefer to simply say "cisgender," which is the word all people who identify with their assigned gender can use.
• You may consider yourself agender, genderqueer, genderfluid, bi-gender, androgyne, or nonbinary.

2.    Use the pronoun you like. Assert that you would like to be called by the pronouns you identify with, and correct people who use the wrong ones. For instance, you can say "'She,' thank you. I'm a woman," or "I go by 'they,' actually, not 'he.'

• If you are trans, you may have to remind your family members a few times that you want to be called the name and pronoun that you have chosen. Be gentle, but firm. Let them know that acknowledging your identity is not an option, it's a necessary part of being in your life.
• Most intersex people use the binary gender pronoun they were assigned in childhood. However, the rates of transition are higher among intersex people than they are in the general population.
• Some intersex people use gender neutral pronouns, such as they/them.

3.    Date awesome people. Whether you are gay, straight, bisexual, queer, demisexual or asexual, you deserve a partner who loves you for exactly who you are. Most people meet their partners through friends, so invest in your social life. Get out and go to public spaces, like galleries, concerts, church gatherings, and poetry readings. Work in an environment you find welcoming and friendly—you may also meet someone through work or a work connection. Join dating websites.

• Date someone who is willing to learn what it takes to date an intersex person.
• Even if you're straight, you might be interested in looking into the LGBTQI community when you date. You might find people who are queer, bisexual, or intersex who you are compatible with.
• Don't date jerks. If someone fetishizes your sex, treats you like they're doing you a favor for dating you, calls you names or puts you down, or if they aren't attentive to your pain or your pleasure in bed, dump them immediately.

4.    Disclose to potential partners. You can choose when to disclose your intersex status. If being intersex is vital to your identity, announce it proudly on the first date: "I'm intersex," and then explain what that means to you. If it's something you think about less often and that isn't noticeable in your appearance, you can bring it up whenever you want.

• You can choose to say your exact diagnosis if you would rather: "I have a condition called androgen insensitivity disorder," for instance. This might be useful for early dates with someone who doesn't know much about intersex culture.
• If you are infertile and things are getting serious with a partner who wants children, be sure to let them know.

5.    Have the sex life you want. If you experience pain during sex, or if your genitals have particular needs and preferences, be sure to discuss these with your partner before any sexual experiences. Talking in the light of day is often better than talking right when sex is about to happen.

• Let your partner know if you experience dysmorphia or shame during sexual encounters. Explain the speed at which you'd prefer to go, and ask your partner to stop if you feel overwhelmed or uncomfortable.
• It can help for you and your partner to agree on a memorable safe word, like "doughnuts!" that means "stop!"

6.    Love yourself. You are you. Your health, happiness, and wellbeing matter. Your life is precious. Accept yourself entirely. Your history has helped you grow. Your mistakes have helped you learn. You are not an accident, and you are not a mistake. You are a human who matters as much as any other human, and you deserve your own love and care.

Getting Good Medical Care

1.     Get your medical records. If you were diagnosed as an infant or child, you may not ever have gotten the full information about your diagnosis and treatment at that time. Your parents or guardians may not have either, or they may have forgotten. Finding out your diagnosis and treatments will help you take care of yourself in the present, and it will also help you make sense of your history.

• You have a legal right to your medical records, no matter how old.
• Even if the hospital thinks they have been discarded, you might be able to find a records clerk who can help you. Showing up at the hospital in person might help.
• Ask a doctor to request your records for you.
• If you can, talk to the doctors who treated you as a child.
• This is especially important to do before you become sexually active, as some conditions require treatment before sex is possible or safe.

2.     Get the treatment your condition calls for. Different forms of DSD may require different kinds of continuing treatment. For instance, some women with AIS need hormone treatment. Other intersex people may need care for pain, incontinence, or other complications that resulted from earlier medical interventions.

• If you don't identify with the gender you were assigned, you may opt to take hormone treatments or get gender affirming surgery.

3.     Assemble a great care team. Find a doctor who specializes in treating your condition, if you can. Call your insurance company and ask for a specialist in Reproductive Endocrinology, or, lacking that, Gynecology, or Urology.

• Reproductive Endocrinology doesn't necessarily have to do with fertility, just with sex hormones.
• Support groups for people with your condition can often point you to good doctors.
• If you already have a good doctor, you can also ask them to research your condition and become something of a specialist for you.

4.     Find a psychologist you love. Many intersex people consider therapy to be a vital part of their wellbeing. Whether you want help accepting your body, or you need to work on understanding parents who were secretive or even forgive doctors who did not disclose important information, talking to a professional can help. Look for a doctor who has worked with intersex or with LGBTQ people before.

5.     Assert your medical rights. Many intersex people are made uncomfortable by being treated as a teaching tool when undergoing surgery or other hospital care. If you are in a teaching hospital, decide whether or not you are okay with doctors and medical students coming in just to learn what your form of DSD looks like. If you aren't, be very clear.

• Assert that you only want the doctors necessary for your procedure to visit your room.

Standing Up For Yourself

1.     Disclose when you want. Some intersex people are pressured to hide their sex identity, while others aren't given the option of privacy. You are the one who should be in charge of decisions about who knows your sex. You can choose to bring it up routinely in conversation, you can tell just the people closest to you, or you can keep it to yourself. It's totally up to you.

• If you are private about your sex, ask your family and friends not to tell other people without asking you first.
• If you would like to be an advocate for the intersex community, talking about your sex publically can be one way of increasing intersex visibility.
• If your DSD was hidden from you as a child, or if your parents treated it like a secret, then you might find it empowering to talk about without secrecy.

2.     Ask your loved ones to advocate for you. If you're like many other intersex people, your parents were given minimal or misleading information about your sex when you were born. They may even have been pushed into signing you up for unnecessary surgery during your infancy. Ask your parents, your romantic partners, and other loved ones to get properly informed now.

• Informed means they should know all the proper terms for your form of DSD, as well as the terms that you identify with.
• If you identify as a gender other than the one you were assigned at birth, insist that your family call you by the pronoun and name you prefer. Ask them not to use language that misgenders you in any way, such as childhood nicknames ("princess" or "cowboy") and family denominators ("daughter," "son").
• Explain to your family members that their support means the world to you, and that one way they can support you is learning about DSD and your particular condition.

3.     Demand respect at work. Address harassment at work directly by explaining that what has happened is unacceptable. For example, you might say "I am not comfortable with you making jokes about my sex or gender. I want them to stop immediately. Do you understand?"

• Tell your supervisor what happened and how you addressed it.
• If you do not feel comfortable addressing it, go directly to your company's HR department and tell them what happened and why you did not feel safe.
• Keep a record of all instances of inappropriate behavior. Write down all the details, including date and time, as well as witnesses and exactly what was said or done.
• If the jokes, comments, or inappropriate behavior continue after you have asked for them to stop, report them to HR and consider filing an official complaint.

4.     Report workplace discrimination. If you are spoken of unkindly at work, report it. Many states consider discrimination against intersex individuals to be gender discrimination. A hostile work or school environment based on sexual harassment should be reported as well.

• If your company is trying to fire you or failing to promote you as a result of filing your claim, or if your superiors fail to address your reports, you can seek help with any human rights organisations.You are legally protected from retaliation if you do so.
• Check your state protections, as some of them might be even more helpful than Title VII.

5.     Report harassment at school. If you are bullied, taunted, teased, or excluded at school because of your sex or gender, report these incidences immediately to your guardians, your teachers, and your school's principal. If your school has a social worker, speak to them as well. If you are at school, report the harassment to your school immediately. If they do not act, consider filing a complaint with the Department of Education.

• Harassment can come from friends and teachers as well as kids you don't know. If anyone makes any negative comments about your sex, gender, appearance, or sexuality, they are in the wrong.
• Get legal representation as a minor. If you are a minor (or the parent of a child) with intersex traits, contact us Rainbow Identity Association so that we can provide you with legal advice and assistance.