Update.Restart: Invisible Illness & Queer Social Events

(Images by Pineapple Supply Co. (@pineapple) from Unsplash)

I think we can all agree that 2020 sucked. Depending on who you are and how lucky you’ve been, it’s been a year that has been somewhere from slightly frustrating to downright horrendous. But I have a confession to make… despite hating 2020,

I loved lockdown

Hear me out – I’m aware that this partly comes from a place of privilege: even though I lost my job, I’m lucky enough to have savings, I live with a loving partner who’s incredibly chill, and I could not be more grateful that I didn’t lose anyone I love or miss any huge life events. But the main reason I kind of enjoyed lockdown is actually something different.
You see, I’m a lupie.

On a white background, lined up are the tops of four pineapples, spray-painted purple, white, blue and pink. In front of the right hand one is a page with the word 'hype' in all capitals.

I got diagnosed with lupus about a decade ago (queue the House jokes…). You can find out more about it here if you’re curious, but for me, it means fatigue, joint pain, sensitivity to sunlight (seriously, vampire levels of sun cream and window avoidance going on here), and dryness (i.e. I have special mouthwash that acts like fake saliva – I know what you were thinking, you dirty minxes…). I also have to avoid alfalfa, which never fails to solicit a ‘what the fudge is that?’ reaction from waiters up and down the country. I should come with a QR code. It’d make life easier…

Anyway, the point is, I live with one or several of these symptoms most days of my life. I’m not fishing for sympathy – my case is relatively mild and I’ve got so used to it that I don’t often notice any more. I can still for the most part live my life fairly normally with some meds and a few minor alterations, which is more than can be said for a lot of people with invisible illnesses (or even a lot of fellow lupies).

On wooden slatted decking, a pineapple is flopped sadly on the floor at someone's feet, wearing slightly battered old loafers.

But here’s the thing: as a sufferer of an invisible illness, the queer scene in London is not really built for people like me. There’s lots of clubbing, and cabaret nights with not enough seating, and socials and parties and zipping from X to Y to Z at the speed of light. Which, when I’m lucky enough to be on my game, is fun, but in most normal weeks is just exhausting. When I’m really not feeling great, going to stand at a bar to watch a show might cost me a week of consequent exhaustion, but not going means feeling isolated, which if 2020 has taught us anything, is that isolation is bloody horrible.

Everything is always a big spoony trade-off (if anyone hasn’t read ‘The Spoons Theory’, consider it your homework task for today from Ms. Jones 😉) . And frankly, I have it mildly – I can’t imagine what it’s like to be suffering with a harder-to-manage invisible illness, navigating the queer scene in London. There are some brilliant live events making an effort to be more accessible to people with all sorts of health or disability issues (like the LADS Show and of course,  Bi Pride UK), but they’re in the minority, not the majority.

I’d almost got so used to this over the years that I’d stop noticing it, but during lockdown, I started to notice that the lack of running around meant my health was better than it’s been in years. And thanks to the awesomeness of events such as Queer House Party, I could sign up to extra things I would normally avoid (in case I’d book a ticket, get excited for weeks, potentially feel horrible as soon as I arrive and have to go home, miss out and feel gutted). I could join in with fitness classes on Instagram in queer, body-positive environments, and know that if my joints hurt and I needed to drop out halfway through,  or turn off the camera to have a frustrated cry, that’s OK. And at Zoom parties there was an option to nap for an hour and pop back later, or snuggle up in bed drinking Diarolyte with a funky cow straw watching some awesome, awesome performers from the comfort of my own bed.

I’ve felt more involved in the queer scene here in London since we’ve been locked down than ever before, and friends I’ve spoken to with their own invisible illnesses feel similarly. Does that mean that as the world opens up, I won’t go to live events? Hell no. Does it mean that I hope venues sometimes stream their events online as well as in person? Or hold some virtual events as alternatives even beyond lockdown, so that people like me don’t always have to push ourselves too far to feel included? Yes. Yes. AND MORE YES.

In super funky bisexual lighting, a cool, astute looking pineapple rocks its sunglasses, surrounded by a string of tiny little glowing fairy lights

Don’t get me wrong, 2020 was still awful. But for me, and for other queer people with invisible (and visible) illnesses and disabilities, it was also a lifeline, and a chance to challenge the queer community on how it socialises by default. My friends all know I’ve got lupus, and during a flare I’ll often shout about it so people cut me some slack, but if I’m honest, I’ve mostly tried to hide how tiring some of this stuff can get until I’m really bad. Instead, now that I know there are alternatives, I’m learning to be a bit more open about it even when it’s a grumble rather than a roar, and

I challenge anyone reading this in similar shoes to be open about it too

And for those of you who aren’t in our shoes? Well, next time you’re planning an event, or working out how to socialise with your queer friends and family, consider whether all of you have to be in person, or if instead people can join virtually in a no-pressure way without missing out. I’m willing to bet that at least one of your friends, even if they always seem fine and they don’t say it out loud, will be as super grateful to have the option as I’ve been.


Written by Maddie Jones

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