Celebrating Pride Month: “I wouldn’t change my identity for anything”

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"I am more than my CF. I am also a proud queer woman." To celebrate Pride Month, Sarah, who is guest editor for the June CF News, shares her experiences. 

Sarah at Pride, holding a rainbow fanI’m Sarah, I have CF and am a proud queer woman. To celebrate Pride Month this June, I chatted  to Ollie, another person with CF who identifies as LGBTQIA+, about our experiences of holding both these identities. Here we each answer three questions which came up during our fabulous chats. 

Are you out to your CF team? Why did you make that choice and how did it come up? 

Coming out is such a unique experience. There’s this idea around coming out that if you realise you’re not straight, you then have to tell everyone straight away. But we don’t owe anyone that information. If you are LGBTQIA+, you don’t need to come out to anyone if you don’t want to. But equally, for those of us that spend so such time in hospital, it is crucial that the wards and clinic rooms are safe spaces for us to be ourselves. That way we will also receive the best care; being open with your CF team is a key part of getting the right treatment, and being closeted can lead to health challenges of its own. 

Coming out to anyone is hard, and, in the case of a medical setting, there may be no natural way of disclosing that information. I am out to my team. For me, it was a conscious choice. I put my asexual pride flag up in my hospital room one time, it led to well-intended questions that allowed me to explain, and that was that. I have also spoken openly about my asexuality and queerness with the team psychologist. But for Ollie it was a much more passive process. 

Ollie: “I am out to my CF team, I had my first ever boyfriend visit me when I was in hospital in paediatrics and I’ve always been out since then! It was never really a conversation of having to come out to them, it was just a case of ‘here’s my partner, he/they are called xxx’ and [the team] never batted an eyelid!”

Do you think having CF helped or hindered your queer self-discovery and self-acceptance? 

Again, mine and Ollie’s answer to this question are very different. 

There is a unique intersection, I think, when it comes to being disabled and asexual. There are so many assumptions about disabled people that, looking back, I think had a real influence on me and caused me to delay exploring my identity. For such I long time I blamed my apparent absence of attraction on being chronically ill. Not only did I see myself as unattractive because I was disabled, but I also thought CF meant I wasn’t capable of feeling attraction towards others. But, of course, I do have a multitude of connections with other people, it’s just that sexual attraction does not play a role in them.  

CF has not influenced what my sexuality is, but, for me, it did delay discovering the labels I now use today. 

I think this is because I was much less social and more closed off from the world as a teenager when I started to feel different from my peers. My negative attitude towards the limits of having CF left me feeling I was less of a person and not willing to explore my identity. I remember some of the Cystic Fibrosis Trust messaging from when I was younger which was ‘CF doesn’t define me’. But at the time I did feel my life was very much defined by my symptoms and my energy levels etc. even though this wasn’t the case. 

But I am just one person, and I was intrigued to hear that Ollie took that same messaging to instead accelerate their queer journey. 

Ollie: “I think CF helped me with the self-acceptance aspect because having CF already made me different to my peers, so when something else made me stand out even more it was an easy transition! I don’t think it ever hindered my self-discovery, if anything it accelerated it as I felt I had to grow up quick.”  

Are you proud to be queer and have CF? 

Ollie: “I’m incredibly proud to be queer and have CF, they’re two big parts of my life and I wouldn’t be who I am without it” 

Proud is an interesting word when it comes to being chronically ill. Having CF, much like my queer identities, is not something I chose or is under my control. But I have come to appreciate that my experience of the world is individual and that gives me value and a unique perspective on things. 

There is this impression within society that disabled people aren’t sexual which has led to much of the activism and messaging being around how disabled people are sexual too. As much as this is an important message, it doesn’t tell the whole truth. As an asexual disabled person, I don’t fit this brand. But there isn’t a limited space for people to express themselves and there isn’t a limit to how many experiences society can be talking about at once. 

So, I would say I am proud to be a queer, asexual woman with CF. I wouldn’t change my identity for anything. And I am proud of the supportive community I have built up around me. I will continue to speak up and spread the joy that has come from being queer and having cystic fibrosis. 

Got a question about CF? Our Helpline is available to anyone looking for information or support with any aspect of cystic fibrosis, a listening ear, or just to talk things through. Our friendly team are here if you need us.

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