Intersex Human Rights Australia

Intersex young people

Finding out you have an intersex variation can come as a big surprise! It’s not something most of us have heard about growing up, but that doesn’t mean you’re alone. There are heaps of us out there with different intersex variations.

A great place to start making sense of it all is to find out more information and meet other people like you. You can learn a bit more about intersex here and what to do in some situations, like at school and when you’re visiting the doctor. There are also some links to great resources and intersex groups you can connect in with.

Not sure if you’re intersex?

Sometimes it’s hard to know if you’re intersex or not. If you’ve seen a doctor, there are lots of medical words to describe different intersex traits, and your doctor may not have used the word intersex either. People also use intersex to mean different things and so this can make it really confusing as to whether your body has intersex traits or not.

We talk about intersex broadly in line with other intersex groups and individuals in Australia and Aotearoa/New Zealand. Basically, intersex includes anyone who is born with sex characteristics that are different from what is considered typical. Sex characteristics include the private areas of your body which often change during puberty and other parts of your body you can’t see, like your chromosomes and hormones. Lots of people have very set ideas about what male and female bodies look like but in reality, intersex people exist and we have bodies that can be a bit different.

There are lots of ways to discover you are intersex. You might realise yourself that your body looks or is developing differently, you might have come across stories by intersex people that sound a lot like your experiences, or your parents/guardian or your doctor might tell you. You don’t need a medical diagnosis to ‘prove’ you are intersex – lots of intersex people don’t get medical diagnoses. If you’re not really sure and you want to know, it’s a good idea to hear from other intersex people about their experiences and see if some of them sound like experience you have had. Whether you are or are not intersex, a lot of the information here can still help you in getting through different situations growing up.

What will happen to my body?

Growing up means there will be lots of changes to your body for intersex and endosex (not intersex) people. It can be a confusing time for everyone, and especially if your body develops in a way that seems different to your friends, siblings and peers. Not all intersex traits are visible (they might just be differences inside you) so you might not notice anything different about your body at all!

There are lots of intersex variations and how your body will change will depend on what variation you have. Even then, people with the same intersex variation can develop a bit differently from each other too! We are all unique and how you develop may be entirely normal for you and your body. If you’re unsure about any changes to your body or if things about your body are worrying you, it’s a good idea to see a doctor to make sure you’re okay.

Around puberty, people often talk about reaching certain milestones like getting your period or your voice breaking. Puberty looks different for all of us and it’s okay to not meet particular milestones or reach them at earlier or later times. You might feel different to your friends and peers, but it doesn’t mean anything is wrong with you. While you might feel pressure to change your body to fit in with everyone else, make sure you take the time to learn about your variation and the different options available to you. It’s also really helpful to meet other intersex people who have made those choices or chosen not to make those choices and see what their experiences have been like.

It’s important to keep clear, open communication with your parents and doctors to learn about what changes to expect for your body during this time and what choices are open to you. At the end of the day, it’s important that you feel in control and that you feel comfortable with any decisions that are made about your body.

What does having an intersex variation mean for my identity?

Having an intersex variation doesn’t have to change anything about who you are. You don’t have to ‘identify’ as intersex or as anything in particular. Intersex traits are part of how your body is and doesn’t have to define who you are. Some people choose to call themselves intersex and some people don’t. For people who talk about themselves as intersex, some might choose to say they have an intersex variation, or that they are an intersex man, an intersex woman or an intersex non-binary person. The language we use can often depend on what we are taught by our doctors, by our parents or how we come to know about our variations. Because people often don’t understand what intersex is either, it might feel like it’s just easier to explain your variation in particular ways that feel more understandable by others. There’s lots of ways to be, and it’s really up to you as to how you identify and what language you use to talk about yourself and your body. How you feel about yourself and the language you use can change over time as well.

Being intersex doesn’t mean you are LGBT either, though you might be! LGBT refers to who you are attracted to or your experience of gender, rather than what body you are born with. Many people still confuse intersex with trans, and while some intersex people are also trans, this does not mean they are the same thing.

Searching for information online

There are lots of resources out there on different intersex variations, but a lot of them are very medical and may make assumptions about who you are, what you want and the choices you should take. There is also so much information online that it can be overwhelming and it can be really hard to know what is accurate or not!

Be aware that there are risks with searching information about your variation online. It can be easy to think that what you read online might apply to you, when in reality a lot is still unknown about many intersex variations and you might experience things differently. The safest way to learn accurate information is to connect in with other intersex people and organisations. There is a lot of knowledge within these groups about the best sources for information and which medical professionals are good to go and see. It is also a good idea to talk to an adult who you trust and feel comfortable talking to about this and get them to help you reach others and find reliable information.

Talking with your family

Your family may know a lot about your intersex variation from your doctor and their own research. They might have strong ideas about what kind of treatment you should or should not be taking. They may have made some big decisions about your treatment in the past.

Whatever the case, it’s important to try and have open conversations with your family about your intersex variation and what it means for you and how they might be able to best support you. It’s also important to have conversations with them about any current or future medical treatments.

Sometimes it can be hard to initiate these conversations. For some families, learning about intersex can be quite a surprise, and they may be unsure what to do. Some parents face a lot of uncertainty because they might worry about what being intersex might mean for you. Often, these fears can be due to families not having much information themselves and not meeting other intersex people and their families.

It might feel like your parents or guardians want you to be a certain way, but it might just be a lack of knowledge and they just want to follow what the doctors have told them. It’s important to remember this is probably all new for your parents too, and they are likely to also need some extra support and information to help them understand what is going on.

Your parents or guardians may have already told your siblings and other people about your intersex variation. Ask your parents and family members who knows about it and talk to them about how comfortable you are about other people knowing. Your parents may have told other people because they need support during this time too, but it’s also really important you have a say in who knows and how much they know since it is your body.

Talking with your friends and using social media

Talking with your friends about being intersex or different changes to your body can be an exciting thing! Remember though that you are the one in control, and you don’t have to share anything about yourself that you don’t want to. Your privacy is important and establishing boundaries with your friends about what you share with them and what they can share with other people is really important. Intersex is often misunderstood by people, so it can be helpful if you do share with friends to also give them links to some videos and other information that help explain what you mean.

You might also want to share information about intersex or about yourself online or on social media. This can be a really empowering experience for many of us, but it’s also important to make sure you are aware of the risks of posting information about yourself. Once you’ve shared something about yourself publicly, it’s likely not possible to take it back. Make sure you’re comfortable with certain information being out there and possibly being known by people you may not expect to come across it before you share anything.

Sharing about yourself with friends can be really helpful and supportive, but it can also be scary, especially if you don’t know how they will respond or if they respond in unexpected ways. While most people experience positive support from friends, it can be unpredictable. Remember that there are intersex organisations and other supports at your school that can help you through this if things get tough.

At school

Being at school can have its own set of challenges for everyone. As an intersex person though, you might face some extra things you need to manage, but you don’t have to do it all on your own.

You may need to take a lot of time off for medical things. Maybe you need to take medications which throw you off for a while or maybe you need to have surgeries which require you to take some time out of school. It can be hard to explain to your friends and your teachers why you need extra time off. Some of us also need extra supports in school, sometimes because of our intersex variation or because of the medical treatments we are taking. It is important that you and/or your parents have an open discussion with your teachers and/or the principal to ensure you can keep up with your studies, and that they can support you to take extra time off or provide any extra supports or adjustments that you might need. During these conversations, you don’t have to tell them that you are intersex or what your intersex variation is, but it is important you are clear about what support you need at school.

You will probably also take classes on sex education at different points in your schooling. This can feel pretty uncomfortable and isolating if your body develops differently to what is being talked about or if intersex is raised but not in an accurate way. Often language used to describe these experiences can be really binary and assumptions are often made about how bodies will develop, but puberty can look different for everyone. Intersex might sometimes also be mentioned in biology and other classes at school. While it is not your responsibility to educate others if you don’t want to, if you feel comfortable this is also an opportunity for you to share some information with your teachers about what intersex is and ask them to include intersex-affirming content in some of their classes. Afterall, it’s likely there are other intersex people at your school too!

Schools often use binary (male/female) language to talk about students and may require gendered uniforms and bathrooms and divide students by gender for sports and school camps. While many intersex people are happy with their gender, for some of us we may feel unsure or uncomfortable about it, especially if we feel that we have been forced into a particular category. You might also have a particular sex recorded on your school file that is different to how you present and see yourself. It can be frustrating when you feel like you have to fit into a particular category. Depending on your school, there might be other arrangements that can be made in relation to some of these issues.

It’s possible that some people at school might bully you and give you a hard time if you look a bit different or if they find out about your intersex variation. Unfortunately, there is still a lot of misunderstanding about what it means to be intersex. For some of us, school can be a challenging time. It’s important if you are having a hard time that you have people around you who can support you – whether that’s some friends, family, teachers, a counsellor, youth worker, and/or other intersex people that you can meet through intersex peer groups.

School sports can also be difficult for some of us and for many people who are not intersex! If your school has shared changing rooms and you don’t feel comfortable getting changed in front of your peers, talk to a teacher or principal about what other accommodations can be made. If you don’t feel comfortable having that conversation, your parents or a counsellor might be able to instead. It doesn’t just have to be about singling out you either – arrangements might be able to be made where everyone is able to change separately. It’s important to talk with your parents and the school about what can be done to help you feel comfortable.

You can expect certain things from your teachers and your school. You should have a safe place where you can learn. Some aspects of school might be hard at times, but there are some things that schools have to do for their students, like provide reasonable supports and not treat students unfairly compared to other students. You have a right to ask for more from your teachers and school if you feel you are not being treated right or not getting what you need. It’s a good idea to raise concerns you have with your parents/guardian or someone else you trust and talk to the school about what they can do to ensure you are properly supported.

At your job

You might have a part time job while at school or maybe you’ve finished school now and you’ve started work. Whether you share with your employer or colleagues that you have an intersex variation is up to you! Sometimes it might be helpful to tell your employer certain things if you need particular adjustments made in the workplace, or maybe you need extra time off for medical leave. Most workplaces are supportive, but if you feel like you are not being respected, supported, or you’re getting bullied or harassed, that’s not okay. Talk to your boss or someone higher up who you trust or your workplace might have a Human Resources department you can talk to.

At the doctor

Going to the doctor can be scary and uncomfortable, even for regular appointments. Remember that the doctor is there for you and your health, so you are the one who should be in control. You can ask as many questions as you need to find out information about your body or what tests or medicines your doctor or parents might want you to take. If your doctor and parents talk with each other without you, you can ask to be present and involved in the conversation and ask that they talk to you directly.

If there is anything you are unsure or uncomfortable about, you should raise it with your doctor or a parent/guardian. This might include things like medical examinations or photography. You can also tell your doctor if you don’t want some people in the room with you like other medical staff, and you can also ask to talk to your doctor alone. Remember, you can say no to anything that makes you uncomfortable.

It can be hard to speak up about what you want in medical settings. It’s important that you feel like you know what is happening and that you feel comfortable and involved with decisions that are made. If you like, you can bring someone along to your appointments – this might be your parents/guardian or a trusted friend. Talk to your trusted person before your appointment and tell them what you are and are not comfortable with. They can support you and speak for you during the appointment.

Going to the doctors is sometimes quite overwhelming. There can be a lot of information given to you which doesn’t make much sense and you might feel like you need to agree to things you’re not really sure about. It’s important that you take the time to learn about what all this means for you and your body and, if you’re unsure, take more time. Ask your doctor for more information or where you can go to learn more, and connect in with other intersex people to learn from them. Remember that you’re not alone. Sometimes you might have to make big decisions, or be involved in decisions being made – but there are other people like you and you can get help to makes these decisions.

You might not know much about what has happened to you when you were younger. Some intersex people find it hard to access medical records later in life. It’s important that you know or are able to have access to your medical history. Talk to your parents about it and/or ask your doctor for your medical records. This can be really helpful for you to make current and future decisions about your medical care.

Sometimes when you go to a new doctor, they may not have heard about your intersex variation before or know very little about it. Some of us feel like we have to do a lot of work educating our doctors. If you’re seeing a new doctor, you might want to come prepared to talk briefly about what your intersex variation is, what it means for you and what it is you want.

Connect with others

While there might seem like there’s lots you need to know now, and you might be unsure about what things will be like in the future for you, the good thing is that there are heaps of amazing intersex people out there who have been through similar experiences before! You’re not alone and you don’t need to know everything at once. Take the time to learn and work out what feels right for you. This is a process and many intersex people find it really helpful to meet other intersex people to help them work out what all this means for them.

There are different variation-specific groups out there as well as broader intersex groups.

The main peer and family support group in Australia is Intersex Peer Support Australia. You can connect with them online and they also hold meet-ups in person from time to time in different cities in Australia, as well as an annual weekend retreat.

If you are in Canberra, A Gender Agenda has an intersex peer worker who you can chat with and they run events for intersex people in the area.

You can also follow YOUth&I, an Australian intersex youth zine. Find YOUth&I at youthandi.org, and on Twitter, Instagram and Facebook. You can have a look at what other young people have written or created about their experiences and you can also contribute to a future issue if you’re interested!

Download issue 1 of YOUth&I

Outside of Australia, here are some intersex youth groups you might be interested in connecting with:

• Intersex Youth Aotearoa is an intersex youth group in Aotearoa/New Zealand.
• InterACT is an intersex youth and advocacy group in the US.
• OII Europe is a European intersex organisation that hold events from time to time for intersex youth. Check out this video made by intersex youth in Europe: ‘Come Join Us: Intersex Youth in Europe’.

• IGLYO (International Lesbian, Gay, Bisexual, Transgender, Queer & Intersex Youth and Student Organisation) is an international LGBTI youth organisation. Check out this video by some of their members: ‘We Are Here: Intersex Youth’.

Other resources

ReachOut.com – ‘Understanding What It Means To Be Intersex’: https://au.reachout.com/articles/understanding-what-it-means-to-be-intersex

Kids Helpline – ‘Understanding people with intersex variations’ (for teens): https://kidshelpline.com.au/teens/issues/understanding-people-intersex-variations

Document history

This page was entirely rewritten by Steph Lum and published on 29 March 2021. Steph Lum is the editor of YOUth&I, and a former chair of IHRA.