Beth shares the challenges of being diagnosed with chronic fatigue syndrome while at uni - and how to overcome them
- Beth Wrightson
I'm a realist, so my initial denial of my diagnosis of myalgic encephalomyelitis (aka chronic fatigue syndrome) was quite out of character. I received this diagnosis during my placement year of my Psychology undergraduate degree, and didn’t know where to go from there. I had been given a name which explained all my symptoms, and it placed me in a category of people suffering from an invisible disease. It allowed me to explain to those close to me why I withdrew from going clubbing and university life, but the understanding I had hoped for didn't materialise. People shrugged it off as laziness and just being tired. Time and time again I would be told "I'm tired too". Friends stopped asking me to meet up, as I'd often have to cancel due to a relapse of fatigue. I had never thought my diagnosis would come with a side order of stigma from society.
Experiencing a sudden isolation, I became depressed and stopped listening to the warning signs my body was giving me about needing rest. I withdrew from my placement, work started to pile up and I became increasingly stressed and low. I stopped telling people about my diagnosis, fearing questions and misjudgement.
Shortly after my diagnosis, my estranged father came back into my life for a short period before deciding to disown me, I was helping a friend suffering from PTSD, I loathed the degree which I’d once loved, and my flat-mate suffered from an eating disorder which caused her to withdraw from our friendship. Instead of coping, I withdrew. I used to silently stare up at my ceiling for hours on end. Everyday actions like washing and cooking became too much. Nine months after my diagnosis, I finally went to my university and asked for help. I broke down in my meeting at Disability Assist. I had accepted that I had been diagnosed as disabled and that I felt alone, and fed up with a body I didn't understand. The denial didn't just dissolve from that meeting; it's taken almost two years for my denial to lift completely. Receiving therapy allowed me to discuss my own feelings about my diagnosis and the other aspects of my life which had become overwhelming.
If you feel depressed, whether it's about a recent diagnosis or another factor, I urge you to talk to someone. I was trying to deal with a combination of different factors in one go and couldn't do it alone. After waiting for therapy with the NHS for two years, I finally experienced the release of stress and tension I needed. Sometimes talking to a stranger is better than talking to a friend or family member as you can be more open, without fearing judgement. Looking back, I think ringing a helpline would have allowed me to discuss things I needed to, whilst waiting for the NHS.
Talk to your doctor to see if there are any treatment routes which could help your disability. I went to my GP several times about my depression, and was offered anti-depressants that I declined, due to personal preferences. However, going to the GPs did help me accept my diagnosis; it also helped me improve my condition.
If you have been diagnosed with a disability, tell your university straight away. By meeting with Disability Assist at my university, I was able to get extra time during my final year exams, which allowed me have a few spare minutes to rest throughout the exam. It also gave me a safe place to talk about my symptoms and condition without judgement. Having a friendly face understand my condition helped me and allowed me to realise that, while having a disability comes with its limitations, it won't stop me from reaching my goals in life. I'll never be able to walk up Kilimanjaro with my fatigue, but I never wanted to anyway!