It’s very hard for me to talk about my M.E. story because it brings back lots of bad memories of each time I relapsed without knowing what was wrong with me. I’d really like to tell it though, so I’ve decided to focus on one aspect of it at a time.
This piece is about the effects on my education and the help I eventually received in the form of reasonable adjustments and mentoring.
As you can see from the photo, there’s a happy ending! So please do read through to get to it, in chunks which are manageable for you. I would like to tell this story to give other people with M.E. some hope.
My M.E. symptoms began with a run of chest infections, one after another, when I was 15, now 25 years ago. Other symptoms of M.E. were all there but with each one I was told by my GP and the school nurse that they were nothing and I was accused of making them up to skip classes at school.
This was before the internet, so there was no way of putting the symptoms together and diagnosing myself. I had to live with these things, although I knew something was wrong. I had to learn to hide my difficulties because I’d been convinced by others that the things I struggled with were just because I was useless and not as good as everyone else. Being in my formative years, this obviously had a huge effect on my self-esteem and the shaping of my character.
Not surprisingly, I turned up at my GP’s with depression at 18 and they latched onto that so it wrongly became my primary diagnosis, all the way up until the current relapse to severe M.E. 3 years ago. All of the symptoms I’ve ever had were at last linked up and it was obvious I’d had M.E. all that time.
I first went to university when I was 18 in the mid-90s to study Medicine at Newcastle. This was shortly after being diagnosed with depression. In those days people didn’t talk about mental health problems at all and it was very much a taboo subject, which came with a lot of shame.
I moved away from home to go to university but had very little support once there. I hid my health problems and I really struggled. My depression worsened and eventually, in the second year of the degree, I agreed to a voluntary hospital admission to a psychiatric ward. When the medical school found out, I was asked to leave the course. I was too unwell to put up a fight or even find advice on what was happening, so I left. I floundered around with no direction for many years, taking jobs but not being able to hold one down. I know now, that these were M.E. relapses but it was very hard at the time, just feeling useless for not being able to stick at something and getting ill, without knowing why.
In my late 20s I started working part time in a pharmacy down the road from where I live. I really enjoyed it, especially talking to patients and helping to sort out problems with their medication. I was also fascinated by medicines and how they worked. I was always asking the pharmacist questions about them and the locum I worked with on Saturdays suggested I studied for a degree in pharmacy.
I was unsure whether I’d be accepted, whether I’d manage and whether I even could, having studied before. I decided to look into it and then applied to the University of Bradford School of Pharmacy on the off chance.
I was offered a place and initially I was too afraid to declare my health problems because of what had happened to me in the past. It felt like someone was going to tap me on the shoulder any minute and say there had been a mistake, I shouldn’t be there.
My depression worsened through the first winter of the pharmacy degree course. The pressure of keeping my struggles to myself, along with the feelings of shame at having something to hide made it so much worse. After a while I couldn’t face going in for lectures and I didn’t understand why I didn’t have the energy to keep going. One of the lecturers phoned me at home to see if I was all right.
I admitted my health problems to her, as best I could with no proper diagnosis and she then phoned me every day for a few minutes to keep in touch and make sure I was OK. Nobody had ever done that before and it meant a lot to me.
When I returned to university the lecturer encouraged me to officially disclose my health problems and apply for Disabled Student Allowance (DSA). It seemed like a big risk – what if I faced more discrimination? She explained that it is confidential and that university staff are not told why someone has adjustments, so nobody would know unless I wanted them to.
I had to challenge my own self-stigma and overcome my fears, or I could see myself having to leave this degree course too. I applied for DSA and received a comprehensive package of support based on the things I found difficult rather than my diagnoses, fortunately.
The reasonable adjustments I received included subsidised taxis to university, a laptop, printer and text books. My DSA also paid for a mentor for helping me with organising myself, motivation problems and study skills. I also had a note taker and a dictaphone because I was missing big bits of lectures due to concentration problems and I found the background noise in lectures difficult. Further adjustments included extensions on coursework if I was going through a bad patch, along with extra time and a separate room for exams. I often studied from home, using lecture notes posted online.
I relied heavily on the support for the first 3 years of my course but gradually needed less. In my third year I received a Regional Adult Learner of the Year award in recognition of my academic achievements despite health difficulties. This seemed a big turnaround from being asked to leave university all those years ago to now being given an award!
There were many relapses, as I now know them to be, but I graduated after 7 years with a first class Master of Pharmacy degree and it was the proudest day of my life (see photo above). The current relapse I’m in had started a few months earlier but fortunately I’d improved enough to manage a couple of hours for the ceremony. Standing a lot and fighting through feeling so ill that day really took its toll. I had a set back to severe symptoms for a few weeks after this but I was determined not to miss graduation day, not after all the hard work and how momentous it was for me!
There were many times that I felt like giving up throughout the course but I felt, this time around, that this university was behind me, encouraging me every step of the way. I’m so thankful for the constant support and encouragement of the University of Bradford’s Disability Service, my lecturers in the School of Life Sciences and my family. I really doubt I would have achieved this without asking for support, so if you’re a student with chronic health problems, please ask for help, don’t keep it all to yourself.
If you’re a teacher or lecturer of a student with M.E., Action for M.E. have a section of their website with information on your obligations and how to support your student, here.
If you’re thinking about going to university yourself, or are already studying, Disability Rights UK also has a Disabled Students Helpline and NHS Choices has a helpful page on looking after your general health as a student, so do check these helpful resources out.
Above all, do not suffer in silence.