The Lyme Museum
This blog was originally written for Diversability. You can read the original post here.
I quit my job.
I thought about quitting my BA about a hundred times.
I thought about quitting my MA to open an art gallery.
I thought about quitting academia, but never did.
And yet, I quit my job.
In March, as I stepped out of the Eurostar, and stared at the new installation at St Pancras, I received a call. I got a job. I remember jumping for joy in front of the sculpture of the kissing couple. I got a job! The post PhD journey had lasted only a few months, but it felt like years, and I could not wait to settle into a flat, get a job, do something. And it wasn’t anything, it was working in the creative industry, with refugees. I got a job.
Before I started my job, I went to Paris for a couple weeks for check-ups. You see, I have late stage Lyme disease. I was confident I could move back because my job wasn’t only part time, it was flexible, which – in my understanding – meant I could move my days around to allow for long weekends that would allow me to go to Paris for emergency doctors; especially the dentist, where I spend most of my time. The pay wasn’t great, but should be enough for Eurostar train tickets.
I did notice that dodgy line in the contract about long term illnesses, but brushed over it, because, you see, I had those long weekends, and it was flexible. Therefore, I did not disclose my illness, and said yes. A couple days later, I found out my manager was leaving three weeks after my start date.
I went to work, and found that a lot of it was doing a lot of festivals. I had assumed I did not need to go to all of them, because I had a manager, and because I was there to bring new communication strategies online. Therefore, I assumed there would be other people to do live streams holding a phone for hours (because, I also have two dislocated shoulders and hypermobility, you see). My manager was quite confident I did not have to be there the whole time, but as time was passing and she was about to leave, I was finding those three days quite heavy on my health. I told her in confidence that, turns out, I have late stage Lyme disease. I know, I don’t look like it. I know, you don’t know what it is; that’s the whole problem. She told me I should disclose it because then work would make arrangements.
So I did.
I filled out a medical form stating I had chronic Lyme disease, and wasn’t on medication at the moment. And, my manager left. And I was told I had to go to all the festivals. I asked if I could take my TOIL the week before the festival rather than after, so I could go for a week-long health screen. My director replied that’s not how things work. Could I check emails while I’m there (you know, at hospitals and all). That I couldn’t decide my TOIL until a few days before. I was confused. Surely, I had been told to disclose my health to have arrangements, and this was just swapping days around.
I went to the festival. I took medicine every hour with shots of caffeine to keep me going. The week after was hell. I missed a day at work. I was told I should be aware that sick days are not paid for people with long term illness. Wait, what? Oh yes, the dodgy line in the contract, I forgot about that. It stated that: “Sick pay will not be paid for pre-existing conditions prior to you joining.” Headache? Pre-existing condition. Stomach bug? Pre-existing condition. Fatigue? Pre-existing condition. You can pin anything and everything on Lyme. I know because I lost my knee to it once; I am now losing my gums and teeth, and in between caught chronic fatigue and insomnia. But sometimes, I just get a cold because I did not wear my scarf, or I get a stomach bug because I had too much bread. Except, you can pin anything and everything on Lyme.
I negotiated to work during the weekend on a project to get my day paid. In retrospective, that was just silly. In fact, I worked most weekends, running the social media, planning a project that did not fit into my duties (which is now one of the most talked about exhibition projects). While I was hired to do some creative thinking on communication strategies to develop the reach of the projects, I found myself typing on a computer 9 to 5:30 with only a 30 minutes break. There was no creativity, and no support. I had to ask permission to go to refugee meetings, while we were programming events for them. I was constantly worried I would miss another day, and not get paid (which on a part time salary, would compromise my rent). I felt entirely underappreciated due to my illness.
But, I got a job.
When the first round of exhibition came and it was a great success, I thought, I did something right. But as the end of my probation period loomed, I couldn’t shake the idea that this clause in my contract was wrong. I was growing more and more tired, more and more sick, and had found no time to write a single line of research (which was supposed to be my other part time job).
I read the contract over and over, and I was aware that in my probation period, I only needed to give a week notice. So, a week before this period ended, I asked for a meeting with my manager. I was really tired, to which he pointed out that I was “a fragile thing”. Really. I asked to have the clause removed from every contract. You see, I always thought creative arts companies would be friendlier and understanding. But this was also a charity working on human rights with a focus on refugees. I thought, how could you be for refugees, but against sick people? I do my job, and I do it very well. I work hard. I write all night. I think all the time. Creativity keeps me alive. So, I thought, before I start thinking about having a day of remote work, at least I want this clause removed. For me. For everyone else. For the person that came before, and the person that comes after, and the one that did not dare to ask.
The answer was no.
So, I quit my job.
And I did it standing alone.
There are heartbreaks in realizing that your dream job isn’t a dream. There are heartbreaks in realizing that your limitations in health are, still, an issue. There are heartbreaks in realizing that you can’t do what others do. But, the greatest heartbreak is watching a room full of people see you fall and have to go and do nothing. I believe in the creative arts, and I believe in human rights, and I believe in the projects I built so much that I even returned three weeks as a freelancer to put on a second exhibition that is changing lives and institutions. But, to an invisible illness, invisible is the support in structures, in people, in colleagues, in institutions, in laws and in ethics. We cannot fight all the battles. But we cannot fight one battle and ignore the one next to us. Be kind, be fair, and try to look past the invisible veil, because as much as we pretend to, we do not want to stand alone.
Or quit jobs.