Why Language Matters to Queer People Diagnosed with PCOS

Pride Month is a difficult time for me. As much as it’s a time for celebrating and remembering LGBTQIA+ history, for many of us it’s also a time that highlights some of our most painful personal moments. For me, those moments are dominated by waiting rooms, awkward examinations with ice-cold speculums, and fumbling through my medical history to the obvious chagrin of my doctor. As someone who was diagnosed with Polycystic-Ovarian Syndrome and identifies as queer in both my sexuality and gender identity, going to the doctor feels like punishment.

I wish I could say that most of my doctor’s appointments have been effortless and that I walked away feeling confident about my next steps towards health, but the truth is that I can’t remember a single time I haven’t left the doctor’s office vowing to never go back. Unfortunately, this is a common feeling among LGBTQIA+ people, with many in the UK reporting avoiding treatment or accessing services altogether for fear of discrimination or intolerant reactions.

I’ve always been fearful of coming out to my doctors because there’s never been a good way to tell whether or not that would expose me to discrimination or compromise my access to their services. In many ways, PCOS is a gendered illness because it is still spoken about as only
affecting women and treatment tends to involve a very cis-heterosexual assumption that those afflicted are primarily concerned with falling pregnant or conforming to a normative feminine appearance, such as not having facial hair.

Breaking down these normative barriers that effectively gender PCOS is important for LGBTQIA+ people who need to access adequate healthcare so that they can work towards health. I believe an important first step here is changing our language to be more sexuality- and gender-inclusive.

But why does sexuality and gender identity matter?

As much as it can feel like sexuality and gender identity should not matter in healthcare spaces, they do. Instances such as being misgendered or having your queer relationship dismissed can have huge implications for how LGBTQIA+ people access healthcare services, including worsening rates of anxiety, depression, and suicide.

A 2018 National LGBT survey conducted by the Government Equalities Office in the UK found that 40% of trans respondents who had accessed or tried to access public healthcare services had experienced at least one of a range of negative experiences because of their gender identity within the last year. These included their specific needs being ignored or not being taken into account and questions or curiosity that they found inappropriate – clearly showing a lack of sensitivity towards LGBTQIA+ patients. This survey coupled with the Government’s LGBT Action Plan, which aimed to advance the rights of LGBT people to live without fear of

And how far have we come since then? Just last month The Guardian reported that the UK has dropped from 10th to 14th place in ILAG-Europe’s annual ranking of LGBTQ+ rights across Europe. It’s significant that this year also marks the 50th anniversary of the first Pride in the UK
– you would think that, by now, things would be better.

What can you do?

Whether you’re a healthcare professional, PCOS community leader, or just looking for some guidelines for what you might want during your appointment, the most important takeaway is that we all need to be amenable to change. The same way that healthcare itself is rapidly
innovating to provide better treatment for all types of chronic illnesses – including PCOS – the needs of LGBTQIA+ people diagnosed with PCOS are also changing. Having an open mind and a compassionate heart is foundational to adequate healthcare, and this is especially true for
marginalised identities.

Here are a few things to keep in mind to create a safer, more inclusive environment for patients, community members, or just yourself:

1. Use sexuality- and gender-inclusive language

The doctor’s office, support groups, and other similar spaces can provoke deep vulnerability for LGBTQIA+ people. Creating a space that has already welcomed their identities is a great way to show that they can be themselves and ask for what they need. Some examples of how you can
make your language more sexuality- and gender-inclusive include:

● Saying your pronouns and asking them for theirs, making sure to give them the option to not share if they don’t feel comfortable.
● Using more inclusive terms such as ‘people diagnosed with PCOS’ and ‘people with uteruses’ to not isolate those who don’t identify as women.
● Explaining what PCOS is, what to watch out for, and how it can be treated but allowing them time to process and tell you what their concerns are. The key here is to believe patients if they tell you that hirsutism doesn’t bother them or that they have no intention of falling pregnant.

2. Open up conversation with your colleagues or fellow activists

Please don’t place the burden of teaching you about LGBTQIA+ issues on your patients. Some may be more inclined to chat about this while others may not. There are many resources available online, but another great option could be to open conversation with your colleagues or fellow activists and learn together. What’s important to keep in mind here is that you don’t always need to be right, in fact, you’re guaranteed to get it wrong every now and then. Allow yourself to be corrected or feel embarrassed, then apologise and move on. You’ll find that – barring repeated offences – most people will be glad you are so open to trying.

3. Create or find support groups for your patients

Support groups are a great way to get people communicating with one another, helping to grow a collective understanding of the kind of care they need. The difficult thing here is that not all PCOS communities are created equal, with many ignoring sexuality- and gender-inclusivity.

Some online groups such as Qpcos or MyOva’s The PCOS Collective offer safer communities for people diagnosed with PCOS to talk about their specific issues, though, and can even serve as starting points for developing your own support networks online or offline.

My experience as a queer person with PCOS

The last time I visited the gynaecologist was in 2019. At that time, my depression over how my PCOS symptoms had worsened was so bad that I couldn’t get out of bed on most days. I decided to pluck up the courage to go to the doctor because I told myself that if I didn’t, I might die. After an uncomfortable examination that showed two inflated, cyst-addled ovaries, my gynaecologist proceeded to berate me about exercise while my partner and I stared at the floor with embarrassment. He seemed frustrated with my disillusionment, repeatedly punching his palm to show how hard I needed to ‘hit it’ at the gym. This appointment was just one in a long line of instances where he’d made me uncomfortable by talking about PCOS through a women-only lens – needless to say, I never felt brave enough to come out to him even when I desperately needed to.

I want to break through my anxiety because avoiding these check-ups feels like a dense cloud hanging over my PCOS diagnosis. I know it’s there but in what way? How have things progressed? Is my current treatment plan helping? Are there better options out there? How easily I know a doctor could answer these questions if they could perform their own
breakthrough and provide care that was inclusive of all their patients.

This piece was written by Ariana Smit.

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