Sex Diaries: 'My Illness Means Sex Leaves Me Exhausted For Days'

I'm 29 and learning to fit my sex life around a chronic, debilitating illness.

Sex Diaries is a weekly series on HuffPost UK that asks readers to share their sex lives: to talk about the sex they’re having (or not). Interested in anonymously sharing your story? Email sophie.gallagher@huffpost.com.

I went on a date a few weeks ago where she turned up half an hour late. For lots of people this would be annoying, but for me it was a real problem – that was 30 minutes of my energy, of good health, totally wasted. I’d had to prepare all day for that short time out of the house.

If I know I have plans in the evening to see someone, especially if we’re meeting in a noisy place, I need to spend the whole day in bed beforehand resting. I’ll listen to podcasts or audiobooks, watch YouTube, and generally avoid anything stressful. It’s a military operation to get me outside.

I use dating apps and am quite up front with people about my chronic fatigue (ME). My symptoms are tiredness, feeling super weak and unsteady on my feet, and slower cognitive abilities (I struggle to find the words sometimes). It takes me a lot longer to do things than it ever used to. People notice I’m not right.

It’s been like this for about two years. Before I was perfectly healthy, super active and played sport. I’d have no problem doing a day at work and going straight to a date several nights a week. Then, over the space of a month, the symptoms set in. Trust me, it’s no picnic.

“If people are looking for long walks on the beach, it’s not going to happen.”

Since I’ve been ill my sex life has been, well, weird. I’ve been single the whole time – trying to meet people is tough when you’re housebound, living with your parents. I can leave for short walks or coffee dates, but if people are looking for those long walks on the beach and shit like that, it’s not going to happen.

Initially I hated the apps. It was like mental torture, looking at all these healthy young people with their amazing photos on holiday. I’d just be swiping and swiping, thinking, why am I doing this to myself? At one point, I put in my profile that I’d just come out of prison to see if more people would be interested than when I told them about my illness. I had lots more swipes.

That made me reassess and take the apps less seriously – to accept that even if it leads nowhere, if I can find a cool person I can chat to and share memes or common interests with, then it’s better than no contact at all. And of course if that leads to sleeping with someone then, that’s cool also.

I have managed to have sex with people, just not in the way I’d maybe have expected. It’s limiting that I always have to meet people near my house – I mean, I could come hang out with you at some trendy bar, but it would probably kill me. So people need to come to me and not stay for ages. And it’s become obvious to me the rest of the world doesn’t operate on that timetable.

When sex does happen it can’t be super energetic. I’m going to be spent early because it’s really strenuous for me. Put it this way, sex can be like going to the gym and I can’t go to the gym. I do less stuff that requires me to support my body weight the whole time, or we lie next to each other and do things. I mean, it sounds like I’m describing sex in a nursing home but that’s the reality. It just can’t be super intense the whole time – maybe it will just take longer.

“One time, I found myself having sex in a Mayfair hotel with someone I’d only just met, so it's not all bad.”

Sometimes you tell people you are ill before you meet and it doesn’t compute, I told one girl over text about my illness, but when we met she was obviously shocked. But then another time I found myself having sex in a Mayfair hotel with someone I’d only just met, so it’s not all bad.

I’m at an age where lots of my friends are in relationships – getting married, having babies, settling down – and I’m living at home. Lots of my male friends aren’t always understanding and will be moaning about their partners or domestic issues without thinking about my situation. We’ve got a WhatsApp group chat and I often think, yeah cool, I haven’t left the house in a month but go off about how you’re annoyed your wife wants to go to Lisbon.

It’s not that I necessarily wanted to get married or anything, but it would be nice to have the option to run away to Las Vegas and marry someone if I want to. Sometimes I’ll watch some terrible Netflix episode where a couple get together and I’ll root for them, but torturing myself is a fool’s game. It gets me nowhere.

And I am feeling better about it than I was. If you’d asked me a year ago, I’d have been far less positive. I don’t know how long I’m going to be ill for, but I guess for a while. Being ill has made me appreciate things a lot more.

As told to Sophie Gallagher.