"I don't know what it feels like to feel like a girl or feel like a boy." Lola Phoenix has a rare condition that stops male and female sex hormones being produced, but the NHS refuses to help. Phoenix tells BuzzFeed News what life is like when you're agender.

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Lola Phoenix walks into BuzzFeed News' central London office talking quickly and quietly before sitting on a sofa, arms crossed over chest to cover what Phoenix wants – needs – surgeons to remove: G-cup breasts. Some women pay thousands for large breasts. Phoenix would have to pay thousands to be free of them, because although assigned female at birth, Phoenix does not identify as a woman. And because the NHS has declined to help. The 27-year-old, who has lived in London since 2010 and was raised in the USA, is agender – that is, without gender, neither male nor female. Phoenix's preferred pronoun is not "he" nor "she" but "they" – which is what I will use here, along with "their" and "them". Some people who do not identify as female or male – or whose identity is a mixture, somewhere in between, not akin to any gender, or simply unfixed – call themselves genderqueer, or gender-fluid. But Phoenix, like many others, prefers "agender" – a total absence, internally, psychologically, of gender.

Lola Phoenix Phoenix as a child

The West London Gender Identity Clinic (GIC) – one of the NHS's main clinical hubs for people needing gender-based healthcare – has refused to reduce Phoenix's breasts. Phoenix produces the letter the consultant psychiatrist Dr Andrew Davies wrote earlier this year to Phoenix's GP explaining why he would not recommend breast reduction and would, instead, discharge Phoenix. In it, Davies concludes:

"Whilst we acknowledge her strong wish for a smaller breast size and acknowledge her reported internal sense of being agendered we would not countenance endorsement of an irreversible surgical procedure unless the individual had been able to demonstrably consolidate a social transition including name change to the preferred gender role." To translate: Davies says he will only refer Phoenix for breast reduction if Phoenix changes their name to a gender-neutral or male one and looks different. This decision came despite Phoenix explaining to him that male is as alien to them as female. Davies calls Phoenix "she" and "her" throughout the letter because "she has made no name change". Phoenix is angry and hurt and unsurprised. People have misunderstood and misgendered them their whole life. This time, however, it comes from the very person who could finally enable Phoenix to have a body that does not feel foreign. Breasts, for them, are so distressing, such intrusive, unwanted extremities that, Phoenix says, sadly, "It's like having two tumours on my chest." Doctors have been treating Phoenix (a chosen name) continuously since birth. "I have septo-optic dysplasia [SOD]," says Phoenix, before explaining that this rare disorder comprises malformations, present from birth, that include an underdeveloped optic nerve, a dysfunctional pituitary gland, and the total absence of a small part of the brain called the septum pellucidum. "So I'm blind in my left eye and I don't make a lot of hormones – cortisol [the stress hormone], thyroid hormones, oestrogen, testosterone, or growth hormone." Oestrogen is the main female sex hormone, testosterone the principal male sex hormone.

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It took doctors three months to diagnose the condition after Phoenix, then named Amanda, was born. The baby spent the first six months of their life in hospital, jaundiced, premature, and with a body temperature that frequently plummeted to inexplicably low levels. Some babies die before doctors diagnose SOD; before Phoenix was diagnosed, the medical staff were so baffled they resorted to extreme measures to try to keep baby Amanda safe. "My mom said the doctors thought she had Munchausen's syndrome [Munchausen's syndrome by proxy is a psychiatric disorder in which people exaggerate or induce illnesses in a relative in order to gain sympathy] and was purposefully making me cold. So they kept me away from her." From 3, Phoenix was given growth hormones. At school in Norfolk, Virginia, the other children started bullying their classmate. "They would make fun of me for not being girl enough. I looked very androgynous growing up – no one could tell what I was. From early on, because my name was Amanda I was called 'A man, duh' and I'd be asked constantly, 'Are you a boy or a girl?'" Phoenix looks out of the window. "I knew I wasn't normal." The SOD, with its resulting absence of hormones, meant Phoenix's hair was unusually brittle, so their mother cut it and kept it short. "I got picked on for looking like a boy," they say. Being bullied meant that when, aged 12, Phoenix was offered oestrogen to help trigger adolescence, they agreed to take it. "I was like, I want to take oestrogen because I want to be a grown-up. I really wanted people to stop asking what I was. I thought I would be made fun of less. But I don't think the decision was really a choice – had I had any concept of, or known about, being agender, or had anyone see that as a valid identity for me, and I'd said, 'Don't give me any hormones,' they wouldn't have agreed to that."

Lola Phoenix Lola Phoenix

Looking back now, it is clear to Phoenix that their gender was absent, but as a child, notions of gender conformity were foisted on them from all around. "The more I was gendered [by others], the more I started realising I didn't fit. There was so much being directed at me of, 'You're not a girl, you're not good enough, we don't know what you are,' that I don't think there was even space for me to conceive of [being genderless]. I was so defined by 'not being human' – in that I didn't make hormones and needed injections to grow and so I didn't feel human – it was hard for me to feel either gender." Phoenix stops for a second. "I don't know what it feels like to feel like a girl or feel like a boy." Phoenix did not conform to the "girl" template, nor did they adopt "boy" traits. Maleness wasn't right, or even safe. "Growing up I experienced sexual abuse, so I didn't gravitate towards masculinity, because I was afraid of it. I thought boys were scary – I associated masculinity with abuse so I didn't want to be part of it." For a year, Phoenix took the oestrogen and started to grow breasts. But then their father, they say, took them off the medication. Puberty stopped. "I looked like I was 12 until I was about 15, when I started taking my medicine again. That was when everything shifted, when everything was really frustrating and bizarre because my boobs started to get huge. It became really uncomfortable." The only comfort was that Phoenix no longer looked like a child, and had a body that differed from the one that had been abused. Despite taking oestrogen replacement medication, adolescence was atypical, too. "When everyone talks about puberty and feeling hormonal, I never experienced any of that." With breasts that kept growing, the other children stopped calling Phoenix a boy or asking which sex they were. "Then they just called me a lesbian. I didn't escape the bullying by getting oestrogen." Family life was tough. Phoenix's parents stayed living together after Phoenix's mother came out as a lesbian. That is, until Phoenix was 12, when, in the middle of the night, their father asked their mother to leave. Relations with both parents remain strained.

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Phoenix coped by escaping into science fiction and fantasy novels. I ask about the Harry Potter tattoo on their forearm. When Phoenix talks about it, it is with such sudden sunniness, grinning and enthusing, that what is most apparent, apart from their love for J.K. Rowling, is that when the needle hit it was the first time Phoenix felt any kind of agency over their body. They went on to study literature at university. There, away from bullies, Phoenix had space to discover a true, fitting gender identity, as well as a sexual orientation. They define as bisexual (or queer when around people who understand the distinction), and came out as such aged 22. Despite having a gay mother, Phoenix has struggled with biphobia from lesbian and gay people. "There's this assumption that bi people can hide and choose and go to the other side," they say. Phoenix's first relationship was conducted entirely online with someone who shocked Phoenix by calling them pretty. "I never really experienced anyone loving me unconditionally before," they say. Now Phoenix believes that their sexuality and sexual responses are dimmed by the lack of self-made hormones. "I don't feel attracted to people very often. I'm not asexual, but there's a word called 'demisexual' – which comes under the asexual umbrella – which means you can't become attracted to somebody without some sort of emotional context. A lot of people think, 'Oh everyone's like that,' but most people can see someone in the street and think, 'That person is hot,' but I would never be able to." The link, for Phoenix, between the SOD condition and being agender is clear, but little else is – not least where they belong. "It [SOD] does seem to explain my agender-ness. But people don't take it seriously. Some trans people assume that if you're non-binary [neither male- nor female-identifying] you don't want hormones or surgery. They assume you were assigned as female at birth, but I don't like using that terminology because even though I was assigned female, my biological condition is not similar to anyone who was assigned female. In some intersex communities I've been told my condition is an intersex condition, whereas my doctors say, 'No, your disorder is not an intersex disorder.' I don't know where I fit." Phoenix even feels different to others within the non-binary community. They believe that many people online who are biologically female but do not identify as women tend to migrate towards masculinity – not neutrality.



Matthew Tucker / BuzzFeed

"I tend to be frustrated in these communities because there is no such thing as gender-neutral," Phoenix says. "You can't be gender-neutral in this society – femininity is the 'other' of gender, so when someone draws a portrait of a person, that person is usually not wearing a dress. Being more masculine is seen as being genderless. Femininity is castigated, so you can't be neutral in that. It's unsurprising then that a lot of 'gender-neutral' things you see are just dapper clothes, like a waistcoat, because there is no real neutrality." Phoenix points to famous people who are spoken of as androgynous – Tilda Swinton, David Bowie: Swinton simply because of the times she doesn't wear lipstick or dresses or other markers of femininity, Bowie for adorning himself with a few such markers. But attempts to express Phoenix's gender identity are, for Phoenix, futile, as all clothing is – along with the person wearing it – categorised as either male or female.

Rob Kim / Getty Images Tilda Swinton Getty images David Bowie

"To me, being androgynous is nothing more than another gender role like forcing myself to be feminine or masculine, another way of trying to get people on the outside to see something about me by dressing a certain way. So I don't seek to be androgynous, I just wear what I feel like. Sometimes that's a skirt because I always rip holes in the thighs of trousers, so clothing becomes about practical, rather than gender, choices." Which is why the letter from the psychiatrist seemed so astonishing. "It was like, 'Lola is accepting of the fact that she' – and they misgendered me because they assume being called Lola I want to be called 'she' – 'Lola accepts that she is perceived and presents as female in society.' But I showed up wearing jeans and a T-shirt! I didn't 'present' as anything, and I'm not accepting of how I'm perceived, I'm resigned to it. No one is going to see me as agender when they look at me. That's just how society is." All Phoenix wants is their breasts reduced, ideally to an A-cup. A full mastectomy or a chest reconstruction, the kind trans men have, isn't right for Phoenix because, again, this is a masculinisation, another gender imposed on them. "It's about being comfortable in my own body. To me that is having a smaller chest and having body hair." Currently, Phoenix has none, and they would need to raise the testosterone levels they take to achieve that – which could further masculinise other parts of Phoenix's body. But what does it feel like to have breasts that do not belong there? "It doesn't feel right, in a fundamental way." Phoenix shifts on the sofa, repeating this in several ways, trying in frustration to explain otherness to yet another person who has only known oneness. "It's like waking up on the wrong side of the bed every morning." In the end, Phoenix reveals instead how desperate the need is to be without their breasts. "I have avoided checking myself for tumours, because if I get a tumour then it's a reason for doctors to remove them."

Matthew Tucker / BuzzFeed

In the meantime, Phoenix makes do, as much as possible, with a non-surgical approach: binding. "Putting on a binder was how I unlocked and realised I definitely want surgery. Before that I thought, 'If I get rid of my breasts no one would ever want me.' But then [thanks to the binder] I felt more positive towards myself. After putting it on I felt psychologically 100% better, like this is what it should be like. But it's uncomfortable and in the summer I sweat. It cuts horribly into my side. I have to tuck cloth in so it doesn't cut into the side as much." Only Phoenix's close friends understand the situation and use the right pronoun – something that means a lot after a lifetime of being misgendered. "When I get called 'she' it's like if everyone started calling you by your middle name. Like, OK, it's on a piece of paper that says that's what I am, but that's not my name." I asked the West London Gender Identity Clinic to respond to Phoenix's complaints about its treatment of Phoenix. A spokesperson said: "We do not comment on individual patients because of our duty to protect patient confidentiality. However, we are sorry to hear that one of our patients was unhappy with the services at the gender identity clinic. If that person wants to get in touch with us we will discuss their concerns and work with them to resolve them. "We would also like to apologise for any distress caused in using a gender-specific term when writing to this patient. Clearly we fell short of our own standards in this instance and we are sorry for that. "Non-binary gender identity is absolutely not a reason why anybody is discharged from the clinic and our clinicians do refer people for surgery. Occasionally, the treatments that patients request are not anatomically or pharmacologically possible and when this occurs this is discussed with them."



Matthew Tucker / BuzzFeed Matthew Tucker / BuzzFeed

The decision to deny surgery was not discussed with Phoenix, who has been discharged after waiting over a year for an initial appointment. Their trust has been compromised to such an extent that Phoenix has no confidence that the GIC adequately recognises or treats people who are agender. "The way the GIC handles it is, if you're a trans woman and you turn up to an appointment without a skirt, they will think you're not really serious about being a woman." It is also likely that to be re-referred back to the GIC would mean waiting another year for an appointment.

Matthew Tucker / BuzzFeed