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  • Writer's pictureSophie Lou Wilson

Notes on pain and pleasure

Contemplating covid, chronic illness and isolation.

Seventeen months into the pandemic, there's little more to say about isolation. The subject has been done to death. Like everyone else, I complained about lockdown one and lockdown two and lockdown three. Sometimes I briefly cast my mind to the clinically vulnerable who were the only ones actually in a real lockdown who couldn’t leave their homes, but mostly I just went for my daily walks and tried not to think too much about what I could be doing with my life if the pandemic had never happened.

In a club, January 2020. Two months before lockdown.

Lock. Down. These words are harsh. Having glided so smoothly into our vocabulary they have since lost their horror movie sheen. Acknowledging the horror of these words means acknowledging the collective trauma of the pandemic which I'm not fully ready to do yet.

I finally got covid.

During my isolation, I have been thinking a lot about illness and stigma; how often society views sickness as some kind of moral failing. Isolation is worse than lockdown. No one else in my house tested positive. I may as well have a red cross painted on my bedroom door. This morning I showered with my mask on. It's not a nice feeling. Being outcast, sick, avoided. A combination of primal fears and my specific social anxieties come to the fore.

Since I've been isolating, six other people I know have tested positive. There's a lot of finger-pointing at young people who are getting ill at the moment as if going to a club or bar means you deserve to get sick. This ignores the fact that it's mostly bad luck. All illness is bad luck in one way or another. Not everyone who has gone out since freedom day has caught covid. No one deserves to get sick and no one deserves the stigma that comes with it. Besides, I hadn't even got a stranger in a club to spit in my mouth yet.

It didn't take covid for me to realise how much society views sickness as a moral failure. For a long time, I didn't feel sick enough to write about chronic illness, partly because as far as I'm aware I have no official diagnosis and partly because my pain is not constant. But I suffer from chronic UTIs and cystitis which can flare up at any time but is pretty much guaranteed every time I have sex.

It didn't feel like a real chronic illness because it's avoidable. If I never have sex again then it would become manageable and the random flares would probably stop altogether. That's a privilege compared to those who experience chronic pain day in day out which is completely out of their control.

However, knowing what triggers it comes with the psychological burden of guilt or feeling like it's your own fault whenever you're in pain. Essentially, sex makes me sick. Add that to a culture that shames women for sex and the pain can feel like punishment (and not the sexy, kinky kind.)

We are taught that sex is bad or dirty. As recently as 2018 a doctor gave me a two-page document titled 'Sexual Hygiene' when I went to see him about my chronic infections. I imagined rocking up to a Tinder date with the piece of paper in my hand and giving a dramatic reading of it as foreplay. I don't know about you but talking about bladder infections and pH levels really gets me hot! Besides I always had a suspicion that the medical document wasn't actually correct. I had done enough research of my own to know that tips like showering before and after sex don't help if your infections are chronic. However, it was only when I finally consulted a private urologist this year that a medical professional discredited nearly everything in that document. It's not about hygiene at all and excessive cleaning makes infections worse. (FYI peeing after sex does help generally but isn't enough for most chronic sufferers and cranberry juice is a myth.)

The urologist prescribed me post-coital antibiotics to take within two hours of having sex. I was too embarrassed to ask what happens if you have sex more than once in 24 hours but later found out you can't take more than two antibiotics in a 24 hour period. Anyway, they didn't work. I was put on daily antibiotics. I haven't started them yet but the next time I'm in a relationship I will have to. I want to put off putting my body through that for as long as I can because there's a risk of developing antibiotic resistance and they can damage your liver. Not fun.

Well-meaning acquaintances will gently reassure me that I’ll “find someone who understands.” But I don’t want to find someone who understands. I want the problem to not exist. Perhaps that seems childish or petulant but it’s how I feel. I don’t want to date men who tell me it’s fine if we can’t have sex as if the only thing I’m worried about is a man not liking me anymore because I can’t have sex with him. I want to have sex because I enjoy sex.

At the same time, I can’t ignore the role that sex plays in building intimate relationships with people and when you're in pain, it's easy to catastrophise. I read forums where women say their partners have left them because they can't have sex anymore, who say that it only gets worse with age, where I read about people who have to get their bladders removed. When I spoke to the urologist, he told me I was “an expert patient.” I said, “Reading about it is the only thing that distracts me when I’m in pain.”

In April, I got stranded in the countryside in so much pain I was seeing stars. I thought I was going to pass out. I could have started screaming. I even thought about asking the guy I was with to punch me to distract me from the pain. When I think of that pain now, I still feel panic rising in my body. I know a lot of people are familiar with this pain, even if they've only experienced it once or twice. For those who aren't, (maybe don't read this sentence if you're squeamish) the best way to describe it is like the inside of your bladder is covered in lots of tiny cuts and your bladder is filled with lemon juice.

This happened on day two of what was supposed to be a romantic weekend away. We had gone for a walk and I left the painkillers I had brought away in my suitcase at the Airbnb. Eventually, we got a taxi back to the car and drove back to the Airbnb where I knew what to do and the pain slowly subsided over time. He asked if I wanted to go home but the only thing more intolerable to me than the pain was the idea of cutting our holiday short when it was the only time we got to spend together properly in lockdown. But the next morning I awoke at 5am in pain again. Then more pain followed throughout the week. With it came the depression.

I haven't been depressed for months. It's the longest I've gone in years but I can predict when the next episode will arrive. It will come after I have sex. The last time I got a UTI, I spent a week in bed where all I remember doing is sending a few emails and watching an Elliott Smith documentary twice. Even once the pain had subsided, I couldn't find the will to get out of bed.

No one has ever said to me, "Just don't have sex then." However, I have thought it myself. But I love sex. And it's not about pleasing men or wanting men to like me which is what many of the conversations around sex and pain or illness focus on. I love sex because it feels good. I love the drama of it. I love the intimacy. And I love giving over the control of my pleasure and pain to someone else for a little while.

But the messages seem clear:

If you don't have sex you won't get UTIs...

And if you hadn't gone clubbing you wouldn't have got covid.

If someone told me I could never have sex or go clubbing again there would be a part of me that would think, well, what's the point in being alive then? There's nothing wrong with prioritising pleasure in your life, especially if you have spent so much time in pain. Prioritising pleasure doesn't mean you deserve pain. It might feel like you have to 'pay' for one with the other, whether that's with a hangover or chronic infection and while that may be the case, that doesn't mean there's something wrong with you if you don't want to give up the pleasure even when it causes pain.

The emphasis on partying as resistance can be overstated, but sometimes it's not about making some huge political statement. It's just about feeling pleasure in defiance of your pain. I want to be able to neck a stranger in a club after isolation. If we end up doing more it will probably come with pain. But the pain alone will be enough to deal with. I don't need the stigma as well.

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