So I have what’s known as Hypermobile Ehlers-Danlos Syndrome which is essentially a, it’s a connective tissue disorder and so it effects everything in your body that is all the collagen which essentially acts as the glue. So it does things like, some people’s skin is very stretchy, mine isn’t. But my joints are unstable and I take a long time to heal and all, all that sort of thing. It also means that I’m in pain quite a lot and quite tired. So with regards to how that impacts the way I present in my transition in general. I find that binding takes a bit more of a toll on me than it does for a lot of people. So, because my ribs and my spine essentially aren’t completely happy with sustained compression I can’t bind for as long as a lot of people and, and that sort of thing. And less so for me, but I know another person who has Hypermobile Ehlers-Danlos Syndrome and is non-binary. They would prefer to wear trousers most of the time. But their skin is very sensitive. So it is much easier for them to wear skirts when that’s not how they want to present, but the skirts don’t kind of rub against their legs in the same way and so, of course, all that pain. But it does have the bizarre benefit of making me look younger than I am, which you already get with being trans and having a trans baby face. So I’ve been told I look about 12 by some people [Laughs] which is slightly concerning as a 23 year old. But yeah, for the, for the most part, they kind of work alongside each other more or less. it’s mostly just binding and fatigue. Yes, so not being able to have the energy to put as much effort as I want to into my appearance and then ending up looking more feminine as a result can be quite frustrating.

Has it affected the way people treat you in any way?

Not that I’m aware of. I’m often worried that it might, given that I mean if you, you walk into a doctor’s place and you go, I’m trans. I’m queer. I’m disabled and chronically ill, I’m mentally ill. And they kind of go like, Okay, well, that can’t all be true,’ essentially. In that there’s this sense that you can only have so many protected characteristics and that sort of thing. So, which is bizarre and completely false, but this sense that you can’t have so much different about you to the, the norm. So I do often get quite worried so things like and I went to my first gender identity clinic appointment. I didnt use any mobility aids even though I knew that I should have done, because I was in a lot of pain afterwards, because I was worried about being judged as essentially attention seeking for being someone who is both chronically ill and trans which doesn’t make an awful lot of sense the more I talk about it. But just that anxiety is something that’s very real and I think exists. And I don’t have a good way of fighting it yet.

So many thing [laughs]. Shorter wait times at the clinics, mostly. But that would require, I mean, we need more gender specialists in general so that we can reduce the waiting times and a better funded NHS for that as well. Better informed GPs is something I’ve already mentioned. And just a slightly more tolerant society, as ridiculous as that sounds would be a relief.

Shorter waiting times. More doctors, better informed doctors and less gate keeping.

How do you think that could be done best?

[Laughs] Overhauling our entire medical system. [Laughs]. No, I think we need better incentives for doctors so that we get more doctors so better funded NHS in general as well. More gender specialists. I think that’s one of the key reasons the waiting list is so long is just because there aren’t enough doctors. And with a growing trans population they can’t meet the demand and that’s why the lists are getting longer and longer and longer.

And then maybe if we had more doctors and there was less, it was seen as something in its own right, rather than a subsidiary of well, less so for Tavistock now, but was previously a subsidiary of the mental health services when obviously transness isn’t a mental health issue. And so being able to get away from that kind of stigma and if it was kind of recognised in its own separate branch, not separate, but kind of individual branch of, of medicine and healthcare. We might also be able to get a better standard for treatment across the board.

Yeah, so I started experiencing depression around the same time I started undergoing puberty, whether that is just part and parcel of hormones raging around the body or some kind of link there. I don’t really know. But I do know that my dysphoria has impacted my mental health a lot. I know that when I get misgendered and that sort of thing it tends to impact my mental health. But the kind of the buffets by it have become less impactful and now I’m in a better place.

One of the key kind of downturns that kept happening was when I would find out about the various things that were going wrong with my referral and the expectations of the waiting times and that sort of thing was particularly rough. So I experienced some quite intense, you know, like suicidal ideation and that sort of thing, specifically regarding my referrals being delayed and the prospect of getting care being even further delayed in that regard.

Why do you think that was?

It’s so hard to put into words. A little bit, you know, it sucks [Laughs]. It’s particularly difficult I think just because if you’re already in a place where you’re struggling with your body and your health and your mental health and if your mental health is tied as mine sometimes is to your dysphoria, not having the opportunity of treatment or having the opportunity of treatment being so severely delayed makes it seem like there’s no possible way out or if there is a way out that it’s years away. It just makes things even harder to deal with than they are already.

Hormones especially regarding non-binary people is such a, always gonna be a pros and cons waiting, because well, I mean, can’t generalise on that. A lot of non-binary people that I’ve spoken to because you can’t pick and choose the effects and you might want some but not others. So, what really helped me decide that at least hormones aren’t right for me right now is knowing the fullness of the effects and the timescale that they tend to happen on. So, things like I would be really excited about voice changes, but less excited about a huge eruption of body hair. But body hair tends to happen a lot sooner than voice changes. So I know that you can’t have one without the other. And to being able to know obviously the timescales aren’t accurate for every person, because every person is different. But having a rough idea of when things happen and which of those you want and don’t want could help manage your expectations for how much hormones are gonna do for you.

I don’t want all the effects and obviously you can’t pick and choose, so that’s what’s kind of mainly holding me back at the moment. Especially things like hair loss is a big one, ‘cos that’s quite common in my family. And it tends to go back like here and so it’s not easy to hide either. But yeah and some of the kind of emotional changes and essentially having to go through puberty again is just exhausting to think about. I wasn’t a particularly acne-ridden teenager. But I could, I definitely could do without being an acne-ridden adult so.

So with regards to the nipple grafts there’s things about like where you want them placed and, you know, how big and all that sort of stuff. And so being fully equipped with all the options that are available to you before you go in is really helpful and also knowing a variety of surgeons and their techniques and their general outcomes. So a lot of surgeons do have photos of their results on their websites be that private or NHS surgeons, because a lot of the NHS surgeons also work privately, so you can see them that way. And so trying to see the surgeons that have done work on people with a similar body type and body shape to you can be really helpful in measuring your expectations of how you think it’s gonna look afterwards and also things like being fully aware of the recovery process and what that might look like for you. And other things that you’re gonna need to get you through that. Things that you might not even think of like are you gonna need a really long phone cable because you can’t twist to pick up your phone from your bedside table, all that sort of thing. So, yeah, just being as informed as possible about all the techniques the surgeon that you want and their kind of a lot of them have different demands and requirements for their patients as well. So some doctors place a, a certain BMI limit despite the fact that I’m not gonna rant about BMI. I have many rants about BMI. But yeah, so things like that. So that you can make the best choices for what works for you. And things like drains as well, so post surgical drains are still really really common. I can think of two surgeons, off the top of my head that well one, doesn’t use drains at all and one is using drains in fewer cases. And so, kind of, looking into whether you want that sort of thing. Cos it speeds up healing for some and slows it down for others and trying to figure what might be most helpful for you.

Aftercare, I know a little bit about things like post op binders to keep the chest compressed to prevent fluid build-up and the drains to drain fluid if you want them. Not that a surgeon will give you a lot of choices generally down to the surgeon’s preference whether they want to use drains or not. So and things like scar care as well. it’s important to think about. And if you’re yeah, scar care and like general wound care is something I’m familiar with in general. There are horror stories of very, very rare situations where people have been pretty bad in taking care of their chest after surgery. They’ve had a nipple graft and their nipple’s like grown black and died and fallen off, but that’s very rare, thankfully. And if you go in knowing what you need to do and you listen to all of the surgeon’s instructions, that won’t happen.

I was surprised how much of a non-issue it was. To be fair, I mean, a lot of my friends are queer and so they just kind of snapped into that quite easily, because they, it’s something that they’re used to. But just the atmosphere is so different to that, to the one, the kind of atmosphere I experience at school. So at school, basically no one was out even as LGBT. It was, unspoken taboo sort of thing. And so being at uni and having kind of everyone celebrate their identities in a way that was new and amazing, kind of gave me the, the confidence to do it. So it was, yeah, it was surprisingly easy, especially even with so even with my tutors after a little while I changed my name in the system and I fiddled with my title and you know, all that sort of stuff. And the administrator from my faculty sent round an email at my request, kind of updating everyone going, ‘Hey, this is name, pronouns. Adhere to this, please’. And there were slip ups, there always are. But, the ease with which the vast majority feel around me even, you know, people in their fifties and sixties switched was astonishing and not something I ever expected.

That’s good to know. Were there any issues, any negatives at all?

There was, there was occasionally misgendering from my tutors. There was only one person who did it. I feel like he was doing it deliberately. But he was only there temporarily anyway. So I didn’t have to see much more of him, which was a relief. I know that my university admin system in particular isn’t the best at remaining consistent. So even though I’ve changed my title everywhere, I still might get letters addressed to Miss rather than Mx and that sort of thing. So there are, there are slip ups. But no deliberate mistakes or anything like that, I don’t think.

So, first of all there was a lot of trying to talk me out of it or kind of talk me out of a referral and the things that I wanted out of a referral. And then there was some kind of almost wilfully misinformed. So things like the GPs don’t have to send you to for a, for a mental health assessment before they refer you. They can now refer you directly to a gender identity clinic, it’s been like that since 2011. So despite the fact that I was going there in 2015 yeah, they were still pushing for that and even when I was going to them saying, No, it’s changed. Here are the guidelines and blah, blah, blah. Presenting with all this, this correct information they were very much kind of, Oh well, you know I know best.

So very set in their ways and reverting to old practice even when it’s not for, even when its four years out of date. So that was very frustrating. And I also, there was some kind of, sort of administrative errors that went on with my referral the first two times I tried. There were, took four attempts to get a referral. The first two times I think were my GP’s fault in that things like she didn’t tell me that I needed to get a blood test, so never sent the referral. And so, you know, I’d ring back a couple of months later going, Was it sent to be accepted? She went, Oh no. Never did it, cos you need a blood test. Well you didn’t tell me that. So there was, yeah, that kind of very much wilful blocking was very disheartening to deal with.

When I saw my [city] GP about it, he’s been fantastic. He’s helped me change my gender marker in the NHS system. And he’s, I, so I’ve tried to get referred a number of times and it was through him that my referral finally actually got sent. So, and he’s just great generally. So I’m disabled and he is great about my chronic illness as well, so. I wonder if there’s something about being in the kind of more liberal space that is [city] that maybe his convictions are a little different. But, yeah, it can be very hit and miss with GPs.

He has always been fantastic. No matter what I’m going to him for, he always takes me as the expert in what’s going on in my own body. So be that with health stuff or trans stuff. He’s never kind of questioned me, Are you sure?’ Or anything like that. He’s always gone, Okay, cool. And then that’s how we move towards dealing with that resolving that issue or whatever the case may be. So, I kind of made an offhand comment about it being frustrating that I was still marked as female in the NHS system. And he suggested the solution to that and asked if it would suit me and then implemented it, immediately which was great.

So I’ve had limited interactions with it so far, mostly just the research I’ve done and the stuff I know from other people and enquiries. I haven’t had any private appointments yet. I am very much aware of the fact that it is a lot faster, than NHS healthcare. But there seems to be pretty much the same level of gate keeping essentially what you’re paying for is just the expedited process from what I’ve seen of the various expectations that doctors tend to have for you.

So an appointment with someone at a place like Gender Care or the London Transgender Clinic, which I think are two main private trans healthcare providers in the UK at the moment is about £250 to £300, £350. And you tend to have two appointments before you can get anything, if that makes sense. So you would essentially pay roughly £600 before you can be prescribed hormones.

I went on a shopping trip with a friend who I felt safe enough with. Crucially, a guy sort of like had access to all the guy’s sections without feeling weird about it. And so, he helped me pick out like a couple of, of T-Shirts and stuff that I could go back and kind of feel a bit more like me in which was really really nice. Trying to think what else I did.

I think shirts was definitely the first step and obviously binding. But it took me a long time to change the rest of my clothes or my hair or anything like that which was fine. It was kind of gradually I don’t wanna say boiling a frog, because that’s got such bad connotations. But making very slow, gradual changes and adjusting to them especially cos I was still trying to figure out my gender and so, going, Okay, well, this isn’t working, gonna try this and okay well, this still isn’t quite right so I can do this. And kind of testing the water to find out what worked.

I kind of asked my friends to use a variety of pronoun sets for me. So, mostly, they/them with some he/him and a couple of new pronouns here and there, which I kind of tested with them for a while to kind of figure out what felt right and from that, I settled on they/them feeling most right. It took me a long time to decide on a name change. I wasn’t sure if I wanted one. But eventually kind of, especially after everything had gone down, I was outed to my parents, I kind of thought well, you know, there’s no more hiding, essentially. And so I did that. I spent a long time on baby name websites, which I think is a fairly, yeah, not too uncommon when you’re trying to figure out what your name should be. And yeah, so alongside the pronoun sets, I also asked my friends to switch to more gender-neutral language which they did quite easily, without issue, which I’m always grateful for.

I’ve often found it a bit of a stumbling block that my trans narrative isn’t standard. That my desired transition pathway isn’t standard. So one of the reasons my parents don’t believe me is because they claim that I never showed any signs of being trans when I was little. And when I point out, you know, ‘What about this, and this, and this, and this?’ they go, ‘Oh that’s just normal.’ Okay, cool. So, I found it frustrating that a lot of trans people are expected to be held to this model, this idea of a model trans person with the most palatable story that is most understandable to people who aren’t trans. Because it harms trans people not just in the sense that if they internalise that they think, ‘Oh, I can’t be trans because I don’t conform to this narrative’, but also because it can impact not just people around you, but healthcare professionals as well. In that if you don’t fit the pattern they expect, that can radically change your access to, to things like healthcare.

So, bizarrely I got, I got fairly intoxicated one evening as one tends to do in first year. And I don’t remember it happening. But a friend of mine came to me the next day and said, “Hey just so you know you talked a lot about wanting to bind your chest and stuff last night. Obviously, you were away and so wouldn’t know if you would remember but there’s that piece of information for you”. And I panicked for 2 or 3 days, I think because that was something that I’d always kept on lock. So realising that I’d kind of ish spilled the beans already was, once I got over the panic was a relief, because I knew that if he hadn’t been accepting in any way, he wouldn’t have told me. He would just let me brush it aside and let it go. But the fact that he came to me and was like, “Look, okay, I can see that you’re, you’ve got some gender incongruence stuff going on”. And I think he also said, “Like I’m here if you wanna talk about it”. And that sort of thing. And so, knowing that some people around me inadvertently already knew and especially having a lot of LGBT+ people in my life and made it a lot easier. So, I came out to the people around me fairly quickly just in terms of saying that I was figuring stuff out more than anything. And they were so supportive, more supportive than I ever could have hoped for in terms of being willing to test out various pronouns sets and all that sort of stuff for me which was fantastic.