Information Hub

Intersex for Individuals

Finding out that you are intersex may be very confusing and confronting. The most important thing to do is to take care of yourself, and if you find yourself struggling, seek support. It is very important to empower yourself with information, especially if you are being pressured into making decisions about your body. The more resources available to you, the better informed decisions you can make. Unfortunately there can be a lot of barriers to finding out certain information; medical records can be lost or have restricted access, and families and doctors might not be completely straightforward with information.

Another important point to remember is that you do not have to navigate this alone. Many intersex people are told they are ‘rare’ or ‘unique’ and that other people do not have similar experiences: this is simply not true. For all their differences, a lot of intersex people have very similar experiences, often of shame and isolation. Finding community can help you navigate these feelings while also offering emotional support. It is worth seeking out support groups, such as those offered at AGA, to connect with other people who have similar experiences.

Only you can decide what intersex means to you. It does not have to change who you are or how you feel about yourself. Nothing needs to change in light of this information if you do not want it to and intersex may or may not be a label you openly identify with. It is up to you if you want to tell anyone and if so, you alone get to decide who has this information, how much they know and why.

Intersex people are diverse and  the word intersex itself encapsulates millions of people living with natural variations. There is no right or wrong way to “be” intersex, and even the exact same variation will be experienced differently by different people. You may find out that you are intersex at any age and you are not expected to become an expert overnight. This is important to bear in mind because many people report that navigating medical services as an intersex person can be extremely difficult due to inadequate care and substandard training that staff receive. Often you may need to be your own advocate. This means it can be important to find the resource’s  to make the best possible decisions for yourself. It is okay to stand your ground when doctors are urging treatment that you are unsure about and to fight for the right to informed consent. You may wish to enlist a trusted friend, family member, or partner to advocate for you at certain times, or to support you when you are required to inform your healthcare providers.

Key Points

  • Intersex people often deal with shame and stigma. It is a systemic problem that requires our societal norms to change and adapt. There is nothing wrong with being intersex, there is nothing wrong with you and you do not have to deal with it alone.
  • Do not feel pressured into making decisions about your body until you have all the facts you need, including medical history. Finding support within the intersex community can help with this.
  • The medical system can be very difficult and tricky to navigate at times. Do not be afraid to ask as many questions as you need to for clarity.  Seek out advocates who can support you, such as a friend, family or other support services.
  • Your intersex status does not need to be central to your identity (though it can be for some people!) and new knowledge about your body does not have to change who you are.
  • There is no right or wrong way to present yourself as intersex to the world and there is absolutely no need to tell people you are intersex if you do not want to. Do what makes you feel safe and happy with an understanding that this may change with age and experience.