Izzie and the CFS journey

So, some people might think it’s weird for me to post about this on a blog that anyone can read but meh, to me it’s not something I feel I need to keep a secret and it could probably be helpful for me to talk about as I’m sure there are some amongst you lucky offer holders who do or will experience similar circumstances. So this blog is about my year leading up to my CFS/ME diagnosis.

What is CFS/ME I hear you ask? CFS/ME stands for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. They are two names for the same condition and it’s up to the sufferer which one they use… I personally prefer to say that I have CFS as it’s less confusing and it makes it easier for other people to understand. CFS is a disorder which primarily causes persistent fatigue that doesn’t go away with rest. Other symptoms include headaches, joint pain, swollen glands, insomnia (ironically) and, my personal demon, brain fog. There are many different severities of CFS. Those who are particularly badly affected may have difficulty looking after themselves and doing simple tasks like washing, dressing and getting out of bed. I am lucky enough to be only mildly affected.

How does it affect me? My main symptom is fatigue. I’m not lying when I say I fall asleep in over half the lectures I attend each week (just ask my friends. They think it’s hilarious). I also experience the dreaded ‘brain fog.’ This means different things for different people but for me, the only way I can think of to describe it is when  you set your computer to ‘sleep’ – it’s still switched it on but it’s powered down and not really doing anything. When I’m in a fog, I’m awake but I can’t concentrate, focus on reading and writing or make much sense of what’s going on around me. I sometimes have difficulty recalling the right words for what I want to say in normal conversation as well.

How have I dealt with my problem this year? I’ve had problems with fatigue for a while now but only properly decided to pursue a diagnosis when I arrived at university. I visited the Imperial College Health Centre (which you must register at during Freshers week, I cannot stress how important it is), had some blood tests and was referred to the CFS clinic at the hospital. In the time between being referred and receiving an appointment, I can’t say that I was very proactive about handling my problem. I stressed relentlessly about the fact I was missing out a lot of major content in my courses either through being mentally out of it during class time or skipping lectures because I was too tired to attend. People kept telling me to record my lectures but embarassment prevented me from doing so.

What changed? When I received my diagnosis I was able to meet with my senior tutor and discuss what the department could do to help me out. This was the best thing I’ve done all year. Throughout the year I had been met with suspicion by other members of staff and my GP at home who thought it was all in my head, but now I knew I wasn’t being ridiculous (WIN!). I’ve now been offered mitigating circumstances to make taking my exams easier for me, permission to record all my lectures and the department have an understanding of what’s wrong with me and why it can be difficult for me to attend very long practicals and lectures sometimes. Meeting with a specialist also helped me as I learnt some strategies for dealing with my tiredness. Imperial can be a very pressured environment sometimes and I often feel like if I’m not studying for five hours a night with no break I’m doing something wrong – recognising that my body physically cannot handle doing this was a big step forward for me. I need to take regular breaks and that’s ok!

Why am I telling you this? If you have CFS, or any other condition which can make your learning experience more challening, the most helpful thing you can do is make your department aware. They have a duty to accommodate you and help you out if you’re struggling. It’s important to do this early on in the academic year so that if you need any special arrangements for your exams, this can be sorted out for you. I, for example, am allowed to take breaks every hour during my exams this summer to help me come back from the physical effect that mental stress has on me. Another thing I want to say to people in this position is that you deserve to be heard. If people are being dismissive or unhelpful about whatever your problem is, it is important to meet with your senior tutor/personal tutor/department head to talk about it, because it is not ok for people to treat you like your problem doesn’t matter, especially if it’s something invisible like CFS.

In conclusion I didn’t write this blog to be inspirational or to make people feel sorry for me – this blog is for sharing my university experience with you guys and that’s what I’m doing. I have a pretty fabulous university life which is made more challenging at times by the fact I am regularly overcome with an overwhelming desire to take a nap in unfortunate places (like tutorials. oops). Know that whatever your circumstances you can still have a great time at university and get a fantastic degree – but make sure to speak up and know that you 100% deserve to be accommodated by your department if you find academic life a challenge.

Stay healthy friends! (And try not to get referred to Hillingdon Hospital during your time here. As I have mentioned previously, it is a massive pain in the bum to get to and you might get lost and take 3 hours to get home which is no fun)

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