Intersex Loneliness

Mathilde Redamare
2 hours ago
5 min read

FEATURE | ISSUE TEN | ISOLATION

Written by Mathilde Redamare (they/them) | Contributing Writer

Since my family moved from the UK, I had always lived in the same suburb in Ōtautahi. My parents had made an effort to develop the same deep-rooted connections that we had left behind. We got involved with our local church, accepted every invitation to spend time with classmates after school, and we participated in as many clubs as were possible for us. Life started to feel normal – settled. Even after the earthquakes, our community was there to support us, and we all worked together to rebuild what we could.

It was only in puberty that things started to change quite quickly for me. I had been told how I would begin to change – but I just… didn’t? My classmates were growing taller, were developing, and they seemed to be taking it in their stride. Of course I had no idea what was occurring, but as children, we develop our own theories that weave into our developing understanding of the world. In a life that now had quite a shaken foundation, faith had become my bedrock. I thought “Well, I have never felt like a boy or a girl, so maybe this is God’s way of taking care of that?”

When puberty did start, it was not what I expected. People would comment on how feminine I was becoming, my proportions, my voice – it was, I think, the first time that I felt dysphoria. I wasn’t becoming one thing or another, but something in between. I tried to get help, to understand what was occurring. Also to try and fix it, which is what I felt I needed at the time. I wanted to start cross-sex hormones to try and make me more male or more female. I wanted information on why I was the way I was. More than anything, I needed other people like me around me.

As it was, though, the medical system at the time just did not know how to deal with me (I genuinely had one doctor ask me “Why would you even want to know that” as if having a label I could fit my body into would somehow be more isolating). Quite frankly, I didn’t have the language to communicate what I was experiencing. That is why it is so important to visibly and vocally platform intersex people. Had I known there were other people out there like me, childhood and adolescence would have been a lot less isolating and upsetting. As an adult, knowing that I am intersex, and working to build networks of intersex people who can care for each other and share their experiences, I have heard so many stories that echo my own. The details change, but the loneliness is often remarkably similar: knowing that something about your body is different, while being denied the language, information or community that might help you understand why.

Being intersex simply means that your anatomy, gonads, hormones and/or chromosomes do not lie neatly within what is typically considered “male” or “female”. Some people, like myself, find out that they are intersex during puberty or later in life. Others have their variation identified at birth, although this does not necessarily mean that they grow up knowing the truth about their own bodies.

For people whose intersex variation is identified during infancy or childhood, that knowledge has often belonged to everybody except them. Medical information may be withheld, surgeries may be performed before they are old enough to understand or consent, and the existence of those surgeries may themselves be treated as a family secret. Rather than being supported through an intentional process that centres their body, experiences and identity, many intersex people discover the truth accidentally: through an overheard conversation, a family member letting something slip, or the eventual discovery of their own medical records.

In a 2017 report produced by Human Rights Watch and interACT, an intersex woman given the pseudonym Ruth described finally obtaining the records that had been kept from her. The first thing she felt was relief: this was a known thing, and there were other people like her. That relief quickly became anger. “These fucking bastards lied to me all the time,” she recalled thinking. “I wish I had known there were others like me.” Her question cuts directly to the cruelty of secrecy as a supposed form of protection: “Why would you deliberately try to make a person feel like a freak?”¹

This is one of the most persistent threads running through intersex stories. People are made to feel that they are the only person in the world with a body like theirs, while simultaneously being warned that telling anybody would make them an outcast. The loneliness is not created by being intersex. It is created by being isolated from the information and people that could make being intersex understandable.

For Irene, an intersex advocate from Russia, that isolation was broken not by her family or doctors, but by an online video. Seven years after undergoing surgery she did not fully understand, she watched intersex people discussing their experiences and immediately recognised something of herself: “Oh shit, that sounds kinda like me! I need to get my medical records!” After asking questions and finally receiving the records her father had kept from her, she discovered that she was intersex. For the first time, she wrote, she knew that she was not alone.²

The relief of recognition did not erase what secrecy had already taken from her. Irene later reflected that being told the truth could have saved her from “seven years of shame, self-hatred and depression”. Her entire life, she believed, might have been different.² There is a particular grief in finally finding the language for yourself and realising how much less lonely you could have been had somebody trusted you with it sooner.

Intersex filmmaker and activist River Gallo described a similar moment of recognition. While researching their film Ponyboi, they encountered intersex people speaking publicly and proudly about who they were. Until then, Gallo had understood their body primarily as a private medical abnormality. Seeing intersex represented as an identity they could openly claim changed that. “I felt a palpable surge of love and pride for my body for the first time,” they wrote.³

That is why visibility matters. Seeing another intersex person does not simply provide information; it can completely reorganise the story somebody has been taught about themselves. A body understood in isolation as a mistake can instead become part of a shared human experience. Shame can become recognition. Secrecy can become language. Loneliness can begin to give way to belonging. Had I known there were other people like me, my own childhood and adolescence might have been very different. I may not have felt such an urgent need to change my body into something more recognisably male or female. I might have understood that I was not failing to become one thing or another. I was simply becoming myself.

For more information, visit intersexaotearoa.org.