“We recognise the trauma and mental health concerns caused by the unnecessary medicalisation of intersex people, as well as stigmatisation of intersex characteristics that has resulted in a legacy of isolation, secrecy and shame. ”
Intersex bodies are a normal part of human biological diversity. Intersex people are born with biological sex characteristics—such as genitals, reproductive organs or chromosomes—that do not fit medical norms for female or male bodies. There are many different intersex variations, and many kinds of intersex body.
Most people with intersex bodies are completely healthy. However, they can experience social stigma and medical interventions because their bodies are perceived as different. All these things can impact their mental health.
Intersex people talk about their variations in all sorts of ways. Because many intersex variations are diagnosed in clinical settings, some people prefer to use medical language. This language can include diagnostic terms such as androgen insensitivity, congenital adrenal hyperplasia or 5 alpha reductase deficiency. Other people may refer to themselves as an intersex person, an intersex woman or man, or as having an intersex variation.
Sometimes it’s obvious when a person is intersex, sometimes not. Intersex traits might be identified before birth, at birth, in early childhood, at puberty, or later in life, such as when trying to conceive a child.
Like many people, intersex people may explore their sexual orientation and gender identity. This will be informed by their physical sex characteristics and lived experience. Intersex people don’t all have the same thoughts and feelings about sex, gender, gender identity, or sexual orientation. Nor do they have the same ideas about how intersex bodies should appear or perform. Intersex people have diverse biological traits and identities, and diverse lived experiences.
Sexuality and mental health
Intersex people generally live healthy and happy lives, in all walks of life. However, being intersex can come with unique stressors that impact mental health.
Living with biological differences in a stigmatising society can create personal distress. This in turn can lead to secrecy and shame relating to bodily appearance and function. It can get worse when there is a lack of accurate information and limited opportunities for contact with peers. These can increase social isolation.
Sometimes an intersex person’s innate physical variations can create other physical health issues. These issues can then become their own source of stress. Sometimes intersex people experience unwanted or sensitive medical interventions that can also have serious impacts on mental health.
Discovering an intersex variation can be an overwhelming and isolating experience at first. This can apply to an individual or to parents of a child with a variation of sex characteristics. Historically, intersex people and the parents of intersex children were not given full or accurate diagnostic facts, or information on their surgical and other medical histories. Withholding this information was thought to help people to grow up conforming to conventional sex and gender norms. This practice is no longer regarded as acceptable.
In Australia, children with intersex variations may still be given hormone treatment or have surgeries performed to 'normalise' their bodies. Sometimes people propose surgery to avoid the social stigma or physical discomfort that might come from living with physical differences. But surgery cannot resolve such issues. In fact, it can often result in physical and mental health consequences, including trauma. Psychological and peer support can help address such issues and concerns.
Some current surgical and hormonal interventions are regarded as violations of rights to bodily integrity, self-determination and freedom from harmful practices by human rights defenders and institutions. The Australian Human Rights Commission is currently inquiring into ways of protecting the human rights of people born with variations in sex characteristics in the context of medical interventions. It is expected to report during 2019 with recommendations for reform to practices in Australia.
Finally, intersex people often experience pressure to change their bodies or self-expression. This pressure is known to affect mental health and wellbeing and can be experienced in different ways. Many intersex people have reported pressure to conform to social expectations for their sex assigned at birth. This includes pressure from both family members and clinicians. Other intersex people have reported pressure to conform to social norms for their sex and gender. This can include the mistaken expectation that to have an intersex variation means to be gay, lesbian, bisexual, or transgender.
Seek support from the start
Time is needed to come to terms with a new diagnosis or treatment proposal relating to an intersex variation. Find out all the information you can. This includes evidence relating to surgical and other treatment outcomes specific to you and your situation. Explore other treatment options and consider getting a second opinion.
Note that psychological support is now considered to be essential to any medical treatment plan. General practitioners or hospitals may be able to offer sources of psychological support.
Self-care is important
Some intersex people may find it hard to ask for help. This might be because of trauma, experience of discrimination, or concerns about privacy. Although it’s true that many people don’t understand what it means to be intersex, there are groups that can offer help and advice on inclusive services. These include intersex-led peer support groups, family support groups, and systemic advocacy groups.
It can be especially helpful to seek out peer support services that have personal testimonies available. You can also watch content produced by people with lived experience, or try talking to peers. Online forums, email and webchat can help overcome barriers of distance and time.
Even if you are not LGBT or you do not have a disability, you may find that LGBTI health and disability organisations can point you in the direction of help.
If you need to seek medical attention to deal with the effects of early surgical interventions, find out all the facts you can. Gather evidence relating to surgical and treatment outcomes. Write down as much information as you can, or consider recording conversations. Take a friend or family member to relevant appointments with you. Take your time to explore all options.
Even if friends or family don’t understand much about intersex variations, many people will do their best to support you.
Caring for someone else
Carers play a crucial role in providing emotional and physical support to others.
Consider accompanying your child, partner or friend to medical check-ups. Asking a loved or trusted person to go along with both of you can help, especially if you are dealing with a new diagnosis or issue. During medical consultations, take as many notes as you can. You can even consider recording conversations. Medical terms can be complicated, so make sure to ask any questions you have. Take time to understand what is being said, and what (if anything) is proposed to happen.
If you are being asked to consent to medical treatment on someone not old enough to understand a procedure, there are steps you can take. Contact a peer support or systemic advocacy organisation for advice. Do not accept pressure to provide consent.
There are a few instances where immediate treatment may be necessary for a young infant. For example, a closed urethra, or salt wasting in congenital adrenal hyperplasia. Whatever the condition, always ask for clear, well-documented evidence of urgent medical necessity. Do not accept pressure from anyone to act quickly.
Ask for clear evidence of surgical expertise and outcomes that preserve sexual function and sensation, and future options. Consider seeking a second opinion. Find out about the legal and human rights implications of medical treatment.
Note that psychological support is now considered to be a core component in any treatment plan related to an intersex variation.
If you are caring for a child, answer their questions in factual and age-appropriate ways. It can be helpful to describe bodily diversity in positive ways. Be honest, and help your child understand their body. Keep in mind that your child will grow up to be able to understand their body and make their own decisions in the future. Surgery and hormone treatment cannot direct the development of your child’s sexual orientation and gender identity. Remember that any child may grow up to understand themselves in ways that you might not expect.
In all cases, secrecy and shame can cause the most harm. It is love and acceptance that can help people manage differences in positive and constructive ways.
You might find online and phone-based mental health resources helpful. Some suggestions are below. You can find more with our Search tool.