Why I No Longer Apologise For Having A Good Time

Holly Wilson
Nov 7 · 4 min read

The first thing said to me last Tuesday, by someone I consider close to me, after I was rushed to A&E at 2am by my out of hours GP because I had melted into a puddle of tears as soon as he placed a gentle hand on my abdomen, were, ‘well, you shouldn’t have gone to comic con.’ Not ‘Are you okay?’ or ‘What happened?’ Just immediate judgement for daring to spend some long awaited time off work having fun and engaging in the one hobby of mine that allows me to escape, albeit temporarily, my normal 9–5 routine and constant professional ‘normal’ facade society likes us to wear.

The very idea that I should have been ashamed, and that I caused my own suffering because I spent time away from home just felt crushing. I felt like screaming. Because this happens every time I spend a day out and get a flare shortly after. Every. Single. Time. In my mind, the flares are bound to happen anyway, so why should I try to limit my fun just in case one happens? That’s like never leaving my house in case it rains. It’s going to rain whether I go outside or not, so I may as well get those groceries, right? I’ll just carry an umbrella, just in case. It’s stupid, and wholly ignorant.

The truth is, I spent those three days attending London MCM, held in the ExCEL centre on London’s docklands, in an unbelievable amount of pain. I spent it in a haze of incredibly strong pain medication, and meticulously planned everything from checking out the stalls to bathroom breaks. Any trips into the packed dealers halls, I took a member of my group in with me. I chose cosplays that were comfortable and allowed free movement, took extra clothes to change into if costuming got too much, carried enough medication around to start up my own independent pharmacy, and even spent a lot of time sitting on the floor. These things were my metaphorical umbrella. See, even now, I’m having to defend myself and vouch that I did everything I could to remain safe and comfortable. Were I not a chronic illness sufferer, would I even have to write this? No. Because nobody would question it.

Me with my wonderful Cats The Musical group at London MCM 2019 (I’m second in on the left) right after this was taken I went and took pain medication and sat on the floor for an hour!

Blaming chronically ill and disabled people for their flares is not only hideously ignorant, it is also cruel. We internalise this enough already that we already blame ourselves. I spent three hours doubled over on my bed, deliberating whether to call NHS 111 to make that appointment, or just get an Uber to A&E, or whether I should just crawl into bed and hope by 6am the pain would abate enough to allow me to go to work. The last option was wishful thinking, but the one thought driving it was ‘people will blame you because you went to con.’ and ‘people will think you’re lazy.’ This is wrong, but it’s a fear I have every time I have to seek medical assistance. The constant disbelief from everyone around you, even doctors, eventually does cloud your own view on things. People with chronic illness often wait the longest possible time before seeking medical help. Not only because of crazy high pain tolerances, but also the constant gaslighting from all angles. For me especially, A&E, and hospital in general, is the absolute last resort, reserved for when the pain is not responding to any of the pain medication I have to hand, when I can’t physically walk upright anymore. When I start crying from pain, I’ve reached my limit. I have had pain so intense I could barely see straight, and still refused hospital until I was practically physically dragged through the doors, or had the choice taken out of my hands by a friend or colleague dialling 999 on my behalf.

For me, what put me in a hospital bed for 10 days, is still undiagnosed. We know it’s something not right with my kidneys, but the current diagnostics has got as far as ‘it’s not kidney stones’ and….nothing else. It seems if it’s not kidney stones, it gets everyone stumped. What I know is whatever it is, when it flares, is easily 10 on the pain scale, probably more. I can hand-on-heart say I don’t remember feeling pain like that for a long, long time. Whatever it is was going to flare at some point, it just chose the worst possible time to do so. I spent over a month with it gradually getting worse and worse with no real way of knowing how to stop it, just…soldiering on through each day in a blur. Maybe this time the flare was because I had gotten home and relaxed, and that opened the flood gates. That and the upper respiratory irritation triggered by a mild allergic reaction to mould that was present all over our exceedingly filthy hostel dorm we’d been staying in, which was likely the straw that broke the camel’s back.

Either way, what I’m trying to say is, if you know someone who recently engaged in an activity and then got sick, don’t be a d*ck. Don’t question them on it. Think to yourself, what would I like to hear if that were me? I’m certain it wouldn’t be something judgemental or accusatory. There is a famous saying that goes ‘there but by the grace of God, go I.’

It would be better for many people if more of us remembered that.

Written by

23 year old graduate living in the South East of England

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