I began identifying as nonbinary aged 26. It was a wonderfully affirming life-decision, and I have only continued to feel better and better about myself the more I have begun to explore this side of my identity. Wearing ‘men’s’ clothes (what does that even mean anyway); cutting my hair short; changing my pronouns with trusted people – these things have all helped me to feel more like myself, which is something that everyone should be entitled to.
However, it isn’t an easy road. Being nonbinary and/or gender non-conforming is difficult enough when we live in a binary world – constant questions of “Is that a man or a woman?” or “But which are you REALLY?”, along with the frequency of being misgendered, are prevalent for anyone who doesn’t conform to gender binary norms. But I have found that being chronically ill has brought some of its own challenges to my gender identity, and I am unable to express myself as freely as I would like to as a direct result of my physical health problems.
I haven’t seen this talked about much – I’ve scoured the internet and found a handful of articles and blog posts, but nothing particularly informative. So I thought, why don’t I share my experiences? There must be other people out there struggling with the same sorts of issues, right? However, I am still at the beginning of my gender journey (I certainly consider myself a ‘baby enby’ at the moment!) so I apologise if, in this post, I allude to anything incorrectly or use negative language. Please correct me if you see me doing this. I freely admit that I am still learning, and I would like to grow and understand the best ways in which to have conversations about gender.
So, I’m going to talk about a few of the biggest issues I’ve found myself running into over the past few weeks. It is certainly not going to be an exhaustive list – there are many, many other difficulties surrounding gender that I won’t go into and probably don’t even know about yet – but I hope that it will be interesting to consider things from a chronically ill perspective. If not, it will at least help me get to grips with things a little better!
If that sounds interesting to you, then read on.
By no means is dysphoria just a chronically ill issue. Most trans people experience dysphoria at one point or another, in various different ways, but I’ve met some problems with it that link quite acutely to my illness and the ways in which I have to take care of my body.
I struggle to wash and dress myself, which means I have to have someone to help me when I want to have a bath or get changed. This means I have to be comfortable with my carers seeing me naked (something I am really, really not very comfortable with). I have always been averse to nudity, and before I realised I was trans, I thought it was to do with my asexuality – I’m quite sex-repulsed, and I thought it was because nudity is often sexualised and that’s why I don’t like people seeing me naked or seeing other people naked. But since questioning my gender, I’ve become less sure. Maybe it’s a gender thing instead, or, more likely, a mix of both sex-repulsion and gender dysphoria.
One thing is for sure: I am dysphoric about my body. I wish I had a flat chest. I wish I had less of a round, chubby face. I wish my hips were slim and my legs straight and longer. As a result, I’m not a fan of seeing myself in the nude – let alone letting someone else see me that way. This is further complicated by chronic illness – it’s hard to love a body that is constantly falling apart.
It took me a long, long time to get to a place where I was able to have someone in the room with me while I was getting changed, and it took me becoming very severely unwell to even accept that. It wasn’t until I’d been in the same bed in the same clothes without a wash for three months straight that I realised how much I was missing out on because of this one issue – I felt so disgusting and horrible about myself that it overruled the feelings of embarrassment and horror at the thought of someone seeing me naked. So I began to accept help.
And, actually, it isn’t as bad as I thought it would be. My current carer is so lovely and she doesn’t ever judge, and we chat about anything and everything while she washes and dresses me so that my body is never the focus. She has never commented on my body, ever, for which I am incredibly grateful, even when she’s helping me into masculine clothes and I tell her about how I really don’t like looking feminine.
I also never change in front of mirrors. It helps that I now wear clothes that aren’t particularly feminine, with a few from the men’s section and outfits that generally lean towards androgynous. As such, I don’t feel like a girl when I’m getting dressed, and that helps to quell the dysphoria some.
And then, one aspect of being chronically actually helped with my dysphoria. I used to have very long hair that reached the small of my back, but I would almost constantly wear it up – in a bun, or a plait, or something that meant I didn’t feel it down around my face. I wasn’t always dysphoric about my hair, but there were certainly days where I would have it up in a bun and I much preferred the way I looked.
Looking after such long hair was a massive problem with my limited energy reserves. At the time, I was living independently without any carers at all (not the best situation anyway), and I had to look after my hair completely on my own. I did not have the energy to wash it more than once a week at the most, and it was often less than that. As a result, the condition of my hair got pretty bad. I couldn’t brush it every day, either, and often left it up in a bun for days, which would allow it to become massively tangled until, every few weeks or so, I’d have to spend hours sitting on my bed crying and using up all my precious energy on sorting through the knots and ripping half the hair out of my head. It was horrible.
So, one day, about six years ago now, I bit the bullet and chopped it all off. I went from this:
I was still identifying as cisgender female at the time – though I always had an inkling that wasn’t right – but it felt so, so good having my hair all off my neck and shoulders and up above my ears instead. I have only ever gone shorter since, and I don’t plan on growing it out anytime soon.
As I mentioned above, I’m very dysphoric about my chest. I have breasts and I hate them. Even typing that sentence made me feel like throwing up; I don’t want to look at them, think about them, or remember they exist. If I could just chop them off then I absolutely would. The idea of having a smooth, flat chest is wonderful to me, and the more flat-up-and-down I can make myself look, the happier I am about my body.
(It is worth mentioning here that not every AFAB nonbinary or trans person will feel this way about their body. That doesn’t make them any less nonbinary or trans. I just happen to experience this sort of dysphoria).
Now, a common solution for trans AFAB people is to bind; that is, wear a piece of clothing that compresses their chest and gives the appearance of flatness. This can be a proper binder, or other methods, though please please do your research before you bind. It can be harmful and very damaging if done incorrectly or for too long.
I started wearing a binder a couple of months ago, and I’m not lying when I say it has changed my life. I spent over a year agonising over it, not sure if I should, if it would be ‘safe’, because of my chronic pain. And this is where the intersection of being chronically ill and trans rears its ugly head again.
As I mentioned above, binding can be dangerous if done incorrectly. It can cause health problems including costochondritis: painful inflammation of the ribs.
Guess who already has costochondritis, and has done for over a decade? Me. You can read me talking about it here.
I thought, there’s no way I can safely bind. I can’t. It would be too risky – I haven’t even been able to wear a bra for years because it’s so painful to have anything constricting my chest. It wouldn’t be smart to try. I shouldn’t even go there.
But as the dysphoria got worse and worse, particularly once I realised I was transmasculine and started using he/him pronouns as well as they/them, I couldn’t take it anymore. I felt so awful every day about my body, I had to do something about it.
I did my research. Tentatively, at first, trying to find anyone else with chronic pain who used binders – and came up with very little. Hence why I’m sharing my experience here, in case another worried baby trans person finds this post and is wondering if they’ll ever be able to bind with their pain.
I managed it. I bind now, successfully, and it makes me feel so much better.
I bought a binder from GC2B, because they’re a trans owned company and had very specific guidelines on how to bind, how to measure to make sure you get the right size, and how often to bind safely on their website. I decided to give it a go – if I don’t bind anywhere near as much as they say you can, and I take it off the second it becomes painful, it’s worth a try, right?
It was absolutely worth the try, and that money is some of the best I have ever spent.
My binder makes me feel like me. I have so much more confidence in it. The first time I put it on, I was taking selfies! I never do that!! Look, I think you can see the happiness in my (very tired, thanks chronic fatigue) eyes:
I’m still careful. It’s a bit of a struggle to get into the binder, but I watched some videos and I have it figured out now. I don’t put it on if I’m having a high pain day, and I may or may not have subluxed a shoulder a few times trying to get it on, so if that happens, then naturally I stop and don’t push it. And on a good day, when I do wear it, I don’t go anywhere near the 8 hours you can wear it for. More like three or four hours and then I take it off.
But for those blissful few hours, I feel amazing. I wear it to the shops and feel so much better. I wear it around my house on bad brain days and I actually can’t describe to you the lift it gives me. 100% worth it.
It’s still frustrating that I have to be careful – on the really bad dysphoric days where I’m in too much pain to wear the binder, I get really low. I have other coping mechanisms for these times, because it is hard to know something is out there that helps, but I can’t use it because of my chronic illness.
Well. There’s a lot of things like that, aren’t there? It’s part of disabled life.
Wearing baggy clothes helps. Anything I can do to hide my chest makes me feel better, and, sometimes, when I’m wearing a baggy top and a men’s jacket, I feel alright even without a binder. I can’t stop myself from looking curvy. I have to accept that as another thing my chronic illness dictates to me, and it’s hard. But there is hope for the future.
I would love to medically transition. But, being in a chronically ill body means the effects of medical transition could hit me a lot harder than they would able-bodied trans people. This doesn’t mean that medical transitioning is completely impossible for me, but it does mean that I have to think carefully about how my sick body might react, and what the long-term impact on my overall health may be.
I have not made any steps towards medically transitioning yet, but I’m on waiting lists. I have a referral to the gender clinic, but the waiting list is 3 years at least at the moment. (A rant about the state of health care for trans people in the UK is a topic for another time). I’m on a waiting list for a private gender clinic too, where I could have a couple of appointments and hopefully start hormones. Top surgery, which feels like a distant dream at this point, will have to be through the NHS, as I can’t afford private prices. I try not to think about it too much.
This isn’t to say that I can’t transition in other ways; I have already pretty much fully socially transitioned. My friends and family use my pronouns. I’m in the process of changing my name legally. I have a great support network of people who see me as I really am. I know for some trans people, that’s all they need.
But for me, it still feels like there’s a big piece of the jigsaw missing. My body doesn’t look like it should, and that feels horrible. So, medical transition is something I hope to pursue.
But I’m still worried. As I said above, I would love to just chop my chest to make it flat and more masculine. I know top surgery exists for this very purpose, but, honestly, I don’t know what the long-term impact on my health may be from any sort of surgery. People with ME take much, much longer to recover from surgeries and health interventions than physically healthy people do, because the nature of the disease means that our bodies don’t have the same reserves of strength and energy that able-bodied people do. It could take years for me to recover from something like that. It could even cause a permanent relapse.
Can I take that risk, really? Would it be stupidly reckless of me to risk permanent relapse of my ME symptoms just to reduce my dysphoria? I honestly don’t know the answer to that. I would love, absolutely love to have the choice, though, instead of having it dictated by my illness. Just once, I’d like to traverse this gender journey, which is difficult enough on its own, without the added concern of my physical health playing a part in my decisions.
In short, I haven’t given up all hope of medically transitioning in ways that would make me feel more comfortable in my body. It’s just going to be a longer, and probably more complicated, journey for me than it would be for able-bodied people.
That pretty much sums up all my thoughts on gender so far. As I continue on my journey, I’ll update in future posts, so look out for those if you’re interested (I tweet all my new posts, so follow me @jasewrites for updates). I wish there were more stories out there from disabled and chronically ill trans people, so I’m going to share mine on the off-chance a struggling disabled trans kid finds this page and maybe, just maybe, finds some hope. Hi, if that’s you. You got this. I’m proud of you.