The C-Word

*Please note content warnings for medical mistreatment and abuse, transphobia and misgendering, and a reference to suicide.*

 
I am a PhD candidate in Creative Writing, an editor, and a tutor – so safe to say, storytelling is a big part of my life, and today, I’m going to be talking about things that should be spoken and things that should go unspoken.

I was twelve when I first came out as transgender. My family was, for the most part, very unsupportive.  I had been mentally ill since I was a young child, and, as would be established years later, I had also had rheumatoid arthritis. I was in constant pain – bodily, mentally, and in the growing dissonance of my gender.

I was sent to a psychiatrist who specialised in trans patients. As much abuse does, his started slowly. Eventually, he shouted at me, belittled me, did his best - very successfully - to make me hate myself, telling me what a burden I was, how selfish I was, how silly and childish I was. He was insistent that I was not transgender, and I just needed everyone to tell me that, force me into feminine roles, use my old name and she/her pronouns as much as possible. Worse, almost, than the verbal and emotional abuse, however, was the gaslighting. He made me feel like I was truly, profoundly insane – not a term I use lightly or uncritically.

He, with and without the blessing of my parents at different times, shared his medical notes on me with my school.

At the same time, my parents’ response to any of my peers respecting my gender was to tell their parents all the reasons I was not transgender, including highly personal medical information. This of course got passed down to the students.

Between these two threads, it made for a school environment in which students and staff alike knew not just details about my gynaecological and endocrine health, knew every time that my medications were changed, knew the worst things that had ever happened to me, but 'knew' that I was a silly, narcissistic, attention-seeking little girl. The joint pain, which was getting worse and worse, was dismissed as a ploy for attention.

I can't overstate how unsafe, trapped, out of control, and demeaned I was at that time. The most intimate parts of myself had been stripped away. I had no choice but to be the most broken form of myself, because that was what people had been told I was. My consent was stripped from me with my privacy. And what’s truly bewildering, and a bit heartbreaking, is that I am sure many of the people involved thought they were doing the right thing.

When I started having what was later identified as a severe allergic reaction to a new medication my psychiatrist put me on, and I told him how much pain I was in, how I was losing my vision, how I was having nosebleeds that lasted for hours, he called me selfish and stupid. I left the treatment room in such a state of distress that I nearly took my own life. While I was out of the room, he and my parents decided to up the dose of the medication that was making me blind. Because it would supposedly sedate me – make me less angry.

They did not tell me.

Shockingly enough (sarcasm), I got sicker. I felt like I was dying. My body was entirely out of my control. It felt like there was poison in me, because there was. 

My parents told me in the end.

This is nearly ten years later. And I have not healed from the betrayal of trust, the lack of safety, my distrust of medical professionals, my scepticism every time my parents comment on my disability or my medication. I am scarred in a way that I don't think will ever heal. And my story is one of the better ones, for both trans and disabled people. I got lucky.

And I have, in fact, gotten very lucky in many parts of my life, not the least in doctors I have had since. A couple of years ago I started seeing a new psychiatrist, and he's the first one I've known who seems first and foremost like a human being - he just happens to be a psychiatrist. And a few months ago, I started seeing a new GP. She said she had received a report on me from my old GP but would appreciate hearing from me what I considered my medical history to be. In my own words, what did I want her to know? How could she help me? When we got to the point of her giving me an injection she had never given before, she said so upfront - her humility was frank and caring and she asked if I would be comfortable with her asking another GP to supervise her doing it – then, if I would prefer a man or woman, if I would rather stand or lie down. And she said if I did not feel safe with another GP, we would find a way around it.

Something in me did, actually, heal. Just from her giving me options. Asking what I needed. Asking what felt safe. It's a skill set not all doctors have. And the amount of strength and bravery it takes for anyone, whether trans or not, disabled or not, to speak up about their own medical care, is horrifying. Cultural humility saves lives. Doctors being taught that their patients have knowledge, autonomy, and a desperate need for trust, saves lives. This is an issue of consent. Every workplace, every profession, asks for different forms of consent. But it’s always there.

My medical details should never have been shared without my consent. My history and the state of my body should never have left that treatment room, and every parent and teacher and student who heard what they did should never have spread it further.

But there are so many things that as a society, we don't talk about enough! We don't share enough. So much awkwardness and discomfort is avoided by just asking questions.

Under COVID, so many of us were acutely aware of death – death is a taboo but asking to sit down with my family and talk about end-of-life plans built the trust and knowledge and safety between us. We built consent into our end-of-life plans. When quarrelling with a friend, we asked each other how best to respect each other and keep each other safe whileworking out our issues.

Small, simple conversations are the most prominent form of consent culture in my life.

Friend comes out as trans? 'Hey, can you tell me how you would like me to refer to you? Is that the same in all contexts? Would you like me to take down old photos of you from my social media?' Bam! Consent culture! Make a new friend who uses a mobility aid? 'Is it better for you if I walk on your left or right? Is there anything that I can do to assist you, or no? Let me know as needed! Is there a best angle for me to talk from with regards to your hearing aid?’ There we go, so much trust built.

The focus need not be on identity. Not on history, not on labels, but on being present in the moment, looking forward to a respectful, caring future – that is what allows us to work through the hard stuff.

Consent summarises many things – it’s respect, trust, safety, humility, grounded-ness, just being on the same page. Consent as a word can be scary, but practising a culture of consent doesn’t require even saying the word aloud – quite often it doesn’t need anything said at all. But thinking about it, everyday, is how we can build consent into everyday life.