By Casey,

My name is Casey, and I have had a chronic illness called Fibromyalgia since the age of 15. Before this, I often battled with my Asthma and depression, but they never truly got in the way of my education. I still managed to get up and get to school most days. My grades were often up and down, never having much consistency as my mental health fluctuated. PE (physical education) was the only time my Asthma was something I needed to be aware of, and I was allowed to walk, rather than run a 200-meter race.

My chronic illnesses never really became a big factor in my school life until I got Fibromyalgia. It started off small. I got TMJ and all over body aches. As time moved on the doctors had no idea what it was, and I was getting more and more ill. If I couldn’t get to school, they weren’t helpful in providing any education in other forms. I constantly asked for work that was provided in class, for any resources or homework they could give me, but they refused. I couldn’t take my exams in hospital, as they refused me that too. If you’re from the UK, you would know just how important Year 11 is to taking your GCSEs.

Attending school and Taking exams with fibromyalgia

School fibromyalgia: schoolchild solving elementary science test
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Unfortunately, I didn’t get any disability support from school for my fibromyalgia until around 4 weeks before my exams. I was finally about to get some tutors that could come to my house. As it was at such a late stage, they just went through revision with me. I still had to take my exams at school with everyone else.

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My GCSE exams were brutal as I was given no extra time. I pushed through the fibromyalgia pain and during my exams up until Year 10. I was allowed to stand up and move around because of how much pain I was in. The time I spent up and about was added onto the end of the exam.

anonymous black pupil solving task during lesson in classroom
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Unfortunately, walking around didn’t really ease the pain, and sometimes made it worse. I wasn’t able to rest my body and was on a lot of medication at the time to take the edge off. It was tough. I have no idea how I got through that period and I struggled quite a lot. Thankfully once exams were over, I was able to rest my body over the summer holidays.

Luckily, I got the results needed to go to college. My fibromyalgia symptoms improved massively over the summer. once the school term started again. It was a huge step to be able to get up and go to college with fibromyalgia. You never understand how much you miss education until you can’t go. I was improving health-wise, more and more over those 2 years in college, to a point where I could go to University.

My university experience with fibromyalgia

School fibromyalgia: accounting administration books business
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University was an amazing time for me. I was able to move around freely. My symptoms hardly ever played up. When I did struggle with migraines or fatigue, I was mostly able to sleep those symptoms off. I was able to function quite normally and I was so grateful for that.

The course I took at University was very suited to my needs as someone with a chronic illness. My first year I only had to go into class for 2 days a week. It was pretty intense as I had 3-hour lectures for each subject, but it was so freeing with the experiences I’d had so far of education. I was able to rest my body for the rest of the week that I wasn’t at University and life was looking up. My University put most lecture slides and work online.

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man wearing gray dress shirt and blue jeans
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Some lecturers even voice recorded classes, so anyone could access that if they were sick, or didn’t understand a specific concept. It was great to be able to go back to anything if brain fog had got you that day, or if you simply couldn’t get out of bed.

The great thing about the course I took was that it was assessment based. I only ever took 2 exam-style tests in the 3 years I was there. 1 of those I was able to do online at my own leisure. The assessments were a great way for me to get everything I had learned down on paper. I could work when I was feeling good, and I could not when I wasn’t. There was always a deadline, but it gave me the flexibility to change or alter anything I needed to. It gave me time to truly reflect on what I was learning.

Finding a suitable university course

school fibromyalgia: close up photography of woman sitting beside table while using macbook
Photo by Andrew Neel on

It gave me so much, that I was so happy I was able to do it. University was a great experience and I was able to come out of it with a great degree. I really recommend anyone who wants to go to University, to check on the things that they provide so as to help you through it.

Do they put their lectures online? Do they have any specific departments that can help you? Is the course assessment, or exam-based?

Universities have a better grasp of how to help ill students than secondary schools do (from my personal experience). Don’t ever get put off furthering your education.

I must say that getting an education with a chronic illness is tough. You fight at every corner to get what you need. You fight doctors, teachers, friends, family, strangers, to get those needs met. It’s hard for people to understand that you need accessibility in place to get the education you deserve.

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With more understanding around disabilities, chronic illnesses and especially those who don’t look sick, we can help all those people going through what I did at such a young age. It’s a struggle, a battle, but we will get there because we are warriors. With the help of loved ones and simply amazing people you find along the way, we will get there.

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