Chronic fatigue syndrome (CFS), otherwise known as myalgic encephalomyelitis (ME), is something of a mysterious illness. The causes of it are unknown, with possibilities ranging from infection, to problems with the immune system, to underlying mental health conditions. The cure is similarly illusive; cognitive behavioural therapy, exercise and medication are all potential prescriptions, but with none of them guaranteed to work. The NHS website simply says that ‘most people improve over time.’
CFS is, in a nutshell, permanent fatigue; essentially, you are very, very tired, all of the time. If you sleep for 15 hours, (as you will often do), you will still wake up tired. If you take a day off from work or school to rest (as you often have to), you will still be tired the next day. If you keep going when you are tired – you try to stay out late, or pull an all-nighter, or just try to keep up with life’s demands – it’s followed by an inevitable crash, and you lack the energy to get out of bed for the next couple of days.
For me, CFS developed when I was in sixth form. What began as a one-off bout of tonsillitis turned into glandular fever, which subsided into post-viral fatigue that never abated. It made studying for my A-Levels quite a challenge; I never managed a full week in school, and my overall attendance for final year was around 45%. I will admit that I didn’t help myself during this time; several days at home often made me stir crazy, and I became determined to live life to the fullest when I was well; this inevitably meant I would crash after a few days, and end up frustratingly bedridden again.
In many ways I’m lucky, in that my condition is relatively mild – those with serious CFS are often unable to leave house – and that I have improved exponentially over time. It is a frustrating experience, to live with an illness that is invisible, has no determined cure, and which some people don’t even believe exists. But I promise I’m not ‘lazy’, or ‘just tired’; just because you can’t see my condition, doesn’t mean I can’t feel it.
[Clare Patterson – @clarepttrsn]