This week (1-7 December) is #CrohnsandColitisAwarenessWeek, and I want to share my personal experiences of managing ulcerative colitis, specifically through… learning to vogue! (Among other things that are admittedly way less exciting to read about.)
When it comes tomanaging ulcerative colitis, the hard truth is that sometimes I don’t.
I received my ulcerative colitis diagnosis in my early 20s, just when I was starting to find my feet in the world. I had a job, I was in a touring band and pretty much thought, ‘this is where my life is going!’ The sudden and frightening onset of my illness and an Ulcerative Colitis diagnosis really pulled the rug out from under me and all the plans I’d made for myself.
First of all, let me tell you what this condition is and how it affects me and the 300,000 other people in the UK who also have it.
📷: above image taken at Brighton Pride 2019’s Let’s Have A Kiki party. CREDIT Anna Gibson
Ulcerative Colitis (UC for short) is part of a group of autoimmune conditions known collectively as Inflammatory Bowel Diseases (IBD – not to be confused with Irritable Bowel Disorder) that includes UC and Crohns’ Disease. (Don’t ask me why Crohn’s gets a special name and UC doesn’t). Autoimmune basically means my immune system is overreacting and attacking itself. How dramatic!
When I have an Ulcerative Colitis flare-up, my large intestine gets angry, inflamed, and I start passing mucus and blood multiple times throughout the day and night, sometimes for weeks. It is painful, debilitating and has put me in hospital on several occasions. It can cause me to lose control of my bowels completely, so I usually have to remain at home for long periods of time.
I can’t eat as anything that goes through my guts will exacerbate it, so I can quickly become weak and malnourished and dehydrated easily. I have maybe one to three flare-ups a year, and high amounts of inflammation can lead to severe complications, such as bowel cancer.
On top of these symptoms, I get swollen joints, inflamed eyes, extreme fatigue and of course, there is the mental side of it – I’ve had some extremely dark days just wanting it all to end. The frustration, the isolation and the constant need to explain it to people who can’t see what I’m going through. I won’t even go into the effect this condition has had on my career and financial stability.
The symptoms of UC are unpleasant, to say the least, and this is most likely why many people don’t know much about it. I’m fortunate that many of my closest friends and family understand more about how it affects me and try their best to adapt plans and projects if I’m in a flare. (However, there are still people who think I have Irritable Bowel Disease! “Oh, it’s similar, though,” they say. Spoiler alert: it really, really isn’t.)
How I manage Ulcerative Colitis
It’s important to note that there is no cure for UC.
People with no experience of this condition will often suggest ways I can ‘fix’ it with yoga/diet/exercise/some magic ingredient, but the truth is, I will always have this condition, and it is not my fault I have it. But UC can be managed.
Managing Ulcerative Colitis comes down to a selection of things that have taken me around 15 years to figure out: maintaining good general health, having support around me, having a job I can do at home and… finding JOY.
This is where voguing comes in!
But how does it help me with managing Ulcerative Colitis?
A trigger for my UC is stress, something I find incredibly difficult to avoid as I suffer from generalised anxiety disorder, as a result of trying to navigate a neurotypical world as a neurodivergent person. Learning to vogue not only keeps me active, but it also appeals to the part of me that loves repetition (YES! A creative outlet for stimming!) and helps me feel connected to both my body and my queer community.
What is voguing?
Voguing is a dance style that has deep roots in New York’s underground ball scene in the 70s, 80s and 90s that emerged to serve as a safe space for queer and trans people of colour to express themselves, find support and family (these families are referred to as ‘houses’).
Films such as Paris is Burning, plus TV shows like Drag Race, Legendary, and Pose have brought vogue to contemporary mainstream audiences, but it is important to know that it is so much more than a dance style (which includes Old Way, New Way and Vogue Fem).
There is an entire history and philosophy behind vogue that is important to keep at the forefront of our minds. We must continue to educate ourselves and others about the roots of ballroom culture, especially if you are entering ballroom spaces as a white person.
The reality today is that ballroom culture continues to thrive in almost every country globally and continues to serve as a radical, inclusive space for many queer people of all genders and backgrounds.
My intro to vogue came first through music: as a DJ working in queer spaces, old-school vogue tracks had started to seep into my playlists, and whilst working as a life model, I would experiment with my poses by copying vogue dancers’ moves.
My voguing dance journey started on Saturday 1 December 2018, at the Marlborough Theatre – my fave queer space in Brighton! I joined a workshop with around 20 other people getting sweaty in the tiny theatre, catwalking, duck walking, laughing and learning with Jay Jay Revlon – father of the House of Revlon. It was such a joyful and beautiful expression of being a queer, gender-nonconforming person, and I was buzzing afterwards.
After that, I travelled from Brighton to Peckham once a month to continue learning with Jay Jay, and as I learned more about the London ballroom scene, the more I realised what an immense privilege it is to learn from someone like Jay Jay. I attended a fantastic Kiki party (a community party for ball-goers, without the competition element of a ball) for Brighton Pride in 2019 and was gearing up to attend my first London ball in 2020.
Of course, that didn’t happen because of you-know-what! Eight months into this pandemic, I’ve been lucky enough to continue learning with Jay Jay online from my home via Zoom once and sometimes twice a week to vogue with a group that is fast becoming my online family. I’ve had one moderate flare of my UC back in September, lasting a few weeks, but as soon as I was able, I was back into the Zoom sessions and building my strength back up.
Voguers are my superheroes, and I’m not sure I’ll ever be good enough or even confident enough to walk in any category outside of ‘Baby Vogue’ until I’m at least 40! But the joy of learning and having a glimpse into the beautiful world of ballroom is really enough for me.
When my joints are painful, I focus on arm and hand performance and have to avoid duck-walk and dipping (btw, it’s called a dip, not a ‘death drop’!) as my swollen joints just can’t hack it. However, the incentive to keep learning and reminding myself that even though my body fights against me sometimes, I can still use it to express the inexpressible and find joy. That joy is integral for me when managing Ulcerative Colitis.