John was diagnosed with Chronic Fatigue Syndrome (CFS) around 13 years ago. He has adapted his lifestyle so that he can continue to work and do his research. While he is open about his condition with his employers and immediate colleagues, he generally does not talk about his condition.
© Disability Narratives
at the time of the interview – 2016
John is an academic at the university. Ethnic Background/Nationality:
at the time of the interview - 2016
John first experienced Chronic Fatigue Syndrome (CFS) (also known as myalgic encephalomyelitis or ME) during his DPhil, when it came on rapidly over a day or two. Since then he has had extensive testing and investigations, and has been told that there is no known cure and he is likely to have it for the rest of his life.
The main symptom John experiences is severe fatigue. He explained that this is far greater than the sort of tiredness he used to experience after working hard for long periods and that other people might be familiar with. Simple tasks can leave him feeling exhausted and needing longer periods to recover. The levels of fatigue John experiences have varied over the years, from being bedbound to currently being able to cycle ten minutes to work and get through the day. CFS also affects John in his teaching and research work by restricting the length of time he can effectively concentrate.
When he first experienced CFS John followed the advice of 'listening to his body'. However, this resulted in him spending a long period resting, which led to physical deconditioning, resulting in worsening feelings of fatigue when he was active. Since then John has had to balance his recovery periods so that they do not lead to his physical condition deteriorating. This means that John also has to manage how much activity he undertakes, so he is not left exhausted.
I really don't want or need anyone's sympathy or anyone's condolences or anything like that. The only thing that I would like from people is just some understanding.
John previously worked at another institution in a fulltime post, but found that after three or four months his health deteriorated rapidly. His current post is part-time and he finds this suits his health better. When John applied for his position at the College he decided to be open about his condition from the outset. John feels that if he is able to explain what the condition is and how it affects him, people can understand that he only needs slight adjustments to be able to work. When he started his only request was for a private space where he could have short rest periods during the day, which the college was able to provide him. John reflected that CFS has had an impact on his career. During his DPhil he had to switch from experimental science to theoretical as he was not able to attend the lab for long periods of time. Presently, John works part-time, but he recognises that much of academia is seen to be a full-time role and that there are few part-time positions available. For John this highlights one of the difficulties that part-time academics have in securing work in the future.