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Fighting To Work

On the day of my graduation, July 2016 (pictured), I had no idea what was to come. All I knew was that I’d have a long summer holiday to look forward to and I was going to university to study English Language & Culture. I was excited. Terms as disability, pain, and Ehlers Danlos Syndrome (which I wasn't even aware of at the time) were not on my mind. Seeing this photo now is heartbreaking — just three weeks in to my study I was forced to quit as I suddenly became too ill. Chronic illness was not a stranger; it had been present in my life for some years, but what I was experiencing when I stopped university was new. The day I left university I promised myself I would be back in a year. I promised myself I’d achieve the following four goals during my “gap year”: find out what was wrong with my body, get more fit, finish writing the book I was working on, and find a job. That was in October and over time my goals seemed less achievable. That was okay though, 2017 was coming, new year equalled new chances. I suppose having a breakdown on New Year’s Eve should have warned me my goals would be delayed, yet it didn’t. As the months went on my goals were further delayed by new symptoms, a load of new diagnoses, medication, constant hospital appointments, ambulance trips, slipped discs, a whooping cough, a near death experience, and more. I had to juggle balancing all of that with the frustration of dealing with people who kept asking me what I was studying, if I had found a job yet, or whether I had finished writing my book. My eyes automatically roll at the thought of these questions; they became something I desperately wanted to avoid. I was trying my best to be a normal twenty year old despite my body refusing to let me. So, to give myself something “normal” to spend time on, I contacted my old school in the hope they’d have a job for me. Soon they invited me for an interview. I was nervous; last time I’d walked through those doors I didn’t need Smart Crutches. Despite the anxiety, my interview went well. I was told I’d hear from them soon when they'd finalized everything, but months went by and I never heard back. I guess they didn’t need a chronically ill colleague. It was a good thing they declined me, as my health declined too. In May, I had to inform my university that I wasn’t able to go back to study. It wasn’t until July that I felt well enough to look for a job. Spare time and the need to feel normal weren’t the only reasons for me wanting a job, money was becoming an issue as well. A doctor had given me a website specifically made to help chronically ill and/or disabled people find a job — perfect. I signed up and two weeks later I had an email back. Unfortunately, the email contained the message that they couldn’t help, because, although I did have chronic illnesses and disabilities, I also had mental health problems. Apparently this meant they wouldn't work with me. So, I applied for a service provided by my council to help people find work...I was told I was too highly qualified. Somebody else had given me another website helping young people with problems find jobs in my region, but for some reason, they didn’t help people from my town. What was I to do now? Feeling like an adventurer who had lost her map, I started looking for jobs myself. This was impossible. All part-time jobs for people my age seemed unrealistic; I couldn’t work in a shop or in a bar or in a restaurant. Was I going to be stuck at home forever? Why were there no services to help people like me? One day my boyfriend met a man who tutored pupils and had given my boyfriend the company name he worked for. At the end of August I applied for a job there. The location was nearby and it again seemed perfect. I sent in my CV and got a reply asking me if I would like to have an interview in two days time. The night before my interview I was consumed by the awful dilemma of deciding between telling them about my invisible illnesses or not; if I told them during the interview I risked not being hired due to my illnesses, but if I didn’t tell them then I risked getting into trouble if something went wrong with my health either at work or at home. I decided to see how the interview went, and purposely went without crutches, a cane or braces. During the interview I actually did end up telling them — no details at all, just that I had quit university due to major health problems and that I did have hospital appointments throughout the week. Despite this, at the end of the interview I was told I got the job! Starting work was fantastic, and I love my job as a teacher. I not only tutor, I also have a class full of students who struggle with school and homework. In a few months I’ll be helping with exam-training as well. The good thing about my job is that it is very flexible. Everyone else who works there is a student at college — so my company is used to needing to be flexible to fit around people’s time tables. Each week I see how much I can work, my days usually don’t even start until two PM, and my colleagues are amazing. I went out for a meal with them and ended up telling them about my health problems; I was blown away by how understanding they were. My boss even told me that if I can’t come along on one of their evening outs — they’ll come to me instead. I feel incredibly lucky. Being a chronically ill teacher is hard. When I had to wear a twenty-four hour heart monitor, the teenagers just pointed and whispered about it yet nobody dared ask me. I’ve had stares at my cane, I was told by one girl that I wasn’t enjoying my job when in actual fact I was suffering from awful fatigue, and when helping one girl with her biology homework I dealt with the frustration of her not caring at all what parts of the body did, where they are and that they are all very much necessary. She told me doctors could solve any problem — I wish I was still that innocent. One of the most challenging things though has been my hearing. I wear two hearing aids because of it and I have found that teenagers do not speak at all clearly. However, these are just minor incidents, I really love my job and it has given me more confidence than I ever dared imagine. Things haven’t been going well lately and work has been very accepting and kind about it. I owe them so much. I’ll most likely be spending some time in the hospital soon and will have to get in touch with the workplace doctor and all the bureaucracy that this involves. The thought of all of it makes me anxious, but I am feeling incredibly lucky with my work situation at the moment. For other spoonies looking for jobs I have the following tips: look for jobs targeting students, as they are often flexible; don’t give up, something will come your way eventually; look for jobs that combine sitting with moving around; don’t be afraid to file a complaint on workplace discrimination; don’t be afraid to use your medicine, mobility aides, or other at work; and I know I have had bad experiences with companies who are out there to help you, but don’t feel afraid to sign up for them anyway. Good luck!

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