Juno Roche is a trans activist and author. Here she shares her journey through a healthcare system that is skewed towards cis men.

I first used heroin at twenty-six years old. By thirty I was a registered addict who would be on an ever-spinning roundabout of treatment, drug use, and trouble for many years to come. I lost over twelve years of my life to my addiction.

For at least ten of those years (my thirties) my daily routine was consumed solely with: taking drugs and finding the money to buy drugs. Often it was easier for me to remain in a single spot on the street, say a phone box or a doorway, where I could take drugs, make the money to buy drugs and take more drugs than return home. My life was chaotic, incredibly tiring, and each day was the same.

My average day looked a little like this: wake up ill and use at 5am, only ever heroin or methadone, there'd never be any crack cocaine left over, that's not the nature of crack. Then sometimes fall back to sleep, but be constantly thinking or dreaming about how I would earn money that day. Get up and start to make money. For me that meant any number of jobs in and around the sex or drugs trade.

Throughout the day, I’d buy and take drugs to keep well, eat a yogurt, work more, do more drugs. Sleep a little in the afternoon, and then go to work on porn lines for the whole night while doing drugs every hour or so in the toilets. Leave work at 3am, work on the way home, buy drugs, sleep and wake at 5am to start again. I did that for at least ten years.

The only respite from that painful and eroding existence was my interaction with different drug services; often walk in, often holistic - I had acupuncture, reflexology and talking therapy, which I accessed in both East and Central London on an almost weekly or sometimes daily basis. At least, three or four times, towards the end of my drug use I accessed residential rehab services outside of London.

The expectation was that you would stay for three months. I didn't stay, I left to use, but, and this really matters, in the time there I'd eat properly, I'd sleep, often for days at a time, I'd cry, people hugged me and told me that I was okay and that it could get better, I was made to feel normal. In there I could close my eyes and see the looks in people's eyes as they passed me on the street, using, buying or selling. A look of pure disgust. I lost count of the times I was called a filthy addict or a crack whore.

In those rehabs, often beautiful country houses I could only dream of living in, like the farmhouse in Lincolnshire, or the Edwardian manor house in Somerset, I started to put myself back together again. I had developed anorexia, without realising it, so a treatment plan was put in place that followed me back out again and over many more years of drug use I was given drink supplements that helped me to put on and maintain my weight. This helped enormously with my newly found HIV status.

In rehab I was also tied into 'multiple-need' therapy for addiction, anorexia and HIV; this continued for the remaining years of my addiction and beyond. In one of those sessions I uttered the words that would turn my life around. 'I'm transgender', I said to my therapist.

I had great interwoven support from a variety of targeted services that helped me to develop a sense of self-worth that I could scaffold upon. I was supported by a system that understood that to treat addiction you have to almost ignore the drug use, lift up the surface and hug and support the underlying causes and needs.

Most people I met through my drug use, be it on the street, in crack dens or rehabs, had a whole myriad of reasons, some far too brutal to mention, as to why drug or alcohol addiction was, for them, a safer life than being unable to create a future from the pain of the past.

But something happened after I told my therapist that I was transgender, something that I only noticed when, in my day to day life,  I tried to access the services I had previously been using as a femme gay man: the services simply became harder to use. They didn't change, I changed, and in changing I drifted cross the gender gap towards womanhood. Back then I identified as a binary woman, before transitioning I was identified as a femme gay man. But a man none-the-less.

The services didn't change, but I noticed slowly that they were either geared towards men - rehabs, drug services and HIV clinics, or for women - poorly funded, women only support groups, anorexia services. As I went through my 'medicalised and formalised transition' I started to notice how my once joined-up care started to fall into disparate pieces. HIV care in one corner with no back up or holistic services aimed at women or the trans community. No research projects directed towards women or the trans community.

I was once sent to a probation rehab facility and instantly it became clear that it wasn't a safe space for me. Despite their best attempts to make it safe I still as a trans woman became the target of both physical and verbal attacks and my addiction spiralled downwards, as did my eating disorder, as I struggled to gain a foothold in safety.

They tried to find me a space in a women-only facility but none could be found as places were, even back then in the halcyon days of funding, few and far between. I was sent home with a script for methadone and the number of a drug project that had once run a women only group.

It was the same in relation to my HIV care, my clinic insisted on misgendering me because they felt that I needed legal documentation to change my hospital records and when I tried to bury my redness at being called Mr, looking at the notice board I saw only groups for gay men, only services geared towards providing external and additional support to men.  I drifted away from all HIV services and started to try to build networks outside of them.

It's tough to build networks without funding. But most of the funding is awarded because of numbers and a sprinkling of sexism. So it follows that more men at the clinics being diagnosed means that others went by the wayside. No one was doing this in any way to create a harmful environment but why would they notice the invisible.

Before I transitioned I didn't see the lack of services for women or the lack of services for the trans community. I was as ignorant of the gaps as they were. Healthcare delivery is designed with men in mind, we only need to look at the incidence and diagnosis of heart attacks to see how there is an expectation of maleness to be saved.

After I transitioned I realised that it would only be me, and others like me, joining up the dots that would allow us to access decent healthcare. I'm not blaming or pointing any fingers but I have, ever since transitioning, had to create my own care pathways and to link the healthcare professionals and institutions together. Try ensuring that your hormone levels are right, not too high and not too low, and you are treated to such a fractured picture of care that it beggars belief.

Since transitioning I have seen one endocrinologist in over ten years. I self medicate not because I am looking to be clever off the back of Google but because the landscape for trans healthcare started out stretched and sexist and despite gratuitous DM headlines, trans healthcare has only become more and more tenuous and fraught with waiting times and a complete lack of sustainable delivery models.

My GP tells me they are not able to provide conclusive answers to my hormonal issues, my HIV clinician tries their best but I simply end up referred back onto a list for the single GIC in London. I gave up and continued to self medicate.

My experiences over the past twenty or so years with an identity that the world defines as 'woman' or 'trans-woman' have shown me that for women there aren't just cracks in healthcare but gaping chasms into which real harm can occur. I know from personal experience that if women can be invisible in the corridors of an NHS hospital then LBT women so often do not officially exist. Try finding a single HIV campaign or poster aimed to lesbian or bisexual women, you won't - I've tried.

This shit matters. If we aren't visible then no-one is catering for us, no matter how many allies tell me they 'have my back', having my back isn’t enabling me to age well hormonally, especially when the people watching my back are often stood in front of me picking up all the funding.

It is me looking at their backs.

We have to fundamentally challenge the structures in and around healthcare that prioritise the male body, the cis-male body. It is simply another system created through the eyes and guise of patriarchal intent. Only by coming together as women, all women, lesbian, bisexual, cis and transgender, will we begin to form networks that have the capacity to demand and then build change. Sadly we will have to do this work because they will not do this for us and if they did it wouldn't be centred around our needs, our authentic needs, rather built on what they perceive we may want.

Healthcare isn't simply a holistic back rub, we need much, much more. Research and communication which centres us, delivery which understands us and medications which are built practically around our needs. It's not good enough anymore to have a seat at the table, it's time for us as women to build structures which by definition don't need a man in the room.

It took me over ten years to get clean from drugs and to begin to eat enough food to sustain my body and to sustain life, much of the work that needed to be done to make that happen, happened because I dragged my sorry arse from pillar to post repairing, self-caring and importantly getting angry about the more invisible I became.

Juno Roche

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• 5% cis women and 53.5% trans women found accessing mental health services Not easy or Not at all easy in the last year¹.
• 24% of trans women felt their specific needs in relation to their gender identity were ignored or not taken into account when accessing healthcare in the last year¹.
• Meta-analysis of international data in five high income countries, including the US, suggests that trans women in particular may be at significantly higher risk of HIV².
• In research conducted in 2012 found 5% trans respondents had received an ED diagnosis, while 19% believed they had one without diagnosis³.
• 2018 research by Stonewall puts rates of eating disorders at 13% of LGBT women, 19% of trans people and 24% of non-binary people in the last year⁴. This is in stark contrast to ‘up to 6.4%’ of the general population reported by Beat, the eating disorder charity.

 For all these reasons and more, The National LGB&T Partnership has, since 2016, run an annual LBT Women’s Health Week. LBT Women’s Health Week 2019 runs from March 11^th to 15^th.

The aim of LBT Women’s Health Week is to raise awareness about the health inequalities which affect women in our communities, to make it easier for service providers to empower service users and for communities to support LBT women.

The week is also an opportunity to celebrate, highlight and learn from the work of groups and services which provide dedicated support to lesbian, bisexual and trans women.

For information on how to support the week, please visit the website: https://nationallgbtpartnership.org/lbtwh/lbtwh-19/

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References:  

1 Government Equalities Office. (2018) National LGBT Survey: Research Report. Government Equalities Office. Available at: https://www.gov.uk/government/publications/national-lgbt-survey-summary-report/national-lgbt-survey-summary-report

2 Baral, S et al. (2013) Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. The Lancet. Available at: http://www.natap.org/2013/HIV/PIIS1473309912703158.pdf

3 McNeil, J., Bailey, L., Ellis, S., Morton, J. & Regan, M. (2012) Trans Mental Health Study. The Scottish Transgender Alliance. Available at: https://www.scottishtrans.org/wp-content/uploads/2013/03/trans_mh_study.pdf

4 Bachmann, C. & Gooch, B., (2018) LGBT In Britain: Health Report. Stonewall. Available at: https://www.stonewall.org.uk/sites/default/files/lgbt_in_britain_health.pdf