The Invisible Illness: A Testimony

Sarah Howden 13 May 2014

When she was 18, Lucy* got flu. But she didn’t get better. She slept 14 hours a day, but was constantly exhausted. Lights became agonisingly bright; noises unbearably loud. “It was like having a really bad cold and two hours of sleep”, she tells me, “but all the time”. She struggled to walk round her block of houses. Hour upon hour of school was lost. Her classmates and teachers were incredulous: “people kept saying I didn’t look ill”. She didn’t know what to tell her friends – after all, isn’t every teenager tired? So she began to isolate herself. And then, after months of blood tests and seemingly endless doctor’s appointments, she was diagnosed with Chronic Fatigue Syndrome (CFS), or ME

ME has many symptoms, and affects every sufferer differently, making it very hard to diagnose. Some people, like Lucy, manage to live a “semi-normal life”. Others find themselves trapped: confined to bed or wheelchairs. It’s often confused with depression, since low moods and panic attacks are brought about by the terror and frustration sufferers feel. As well as persistent exhaustion, sleep disturbance, headaches and dizziness, “Brain fog” can seriously affect memory and concentration. But there’s a problem. Although the World Health Organisation recognises ME as a neurological disease, most people know nothing about it.

Other students often complain about sleep deprivation: “People say ‘I wish I could sleep for 12 hours a night’. But if you’re sleeping 8 hours, that’s 28 hours a week more of life you get to live, that I just don’t have.” This isn’t 'being a bit run-down after a late night'. This is something entirely different.

At Cambridge, Lucy didn’t seek official support until Easter term. Back at school, neither she nor her teachers knew ME qualified as a disability. Why should University be any different? When other Freshers were out clubbing, she was back in college asleep. “You seem stand-offish because you keep saying no to things, and you feel guilty for doing things you enjoy because you haven’t finished the work

After she sought help, things got easier. She tells me all her supervisors have been “really understanding”. She can record lectures, and gets ‘library support’ so she doesn’t have to go out and get books herself. She’s also allowed extra time in exams, although hopefully she won’t need it. “The worst thing is the unpredictability. Other people can allocate two hours to work and then go out. But I might have to spend one of those hours lying in a darkened room, unable to concentrate. You just never know”. Lucy is sceptical about getting ‘better’. She grimaces as she makes the quotation marks with her fingers. “You could be 99% well and then relapse”.

Right now, ME has no definitive cure. This means that Lucy will never know if or when she’ll regress. It could well be the day of her finals, or her graduation, when she’s unable to get out of bed. As one sufferer put it, “I’ve bought an outfit for my son’s wedding. If only there were more than a slim chance that I’d be able to use it”.

And yet Lucy is still asked by incredulous students why she hasn’t done the supervision work. People still envy how much sleep she gets. Even the name “Chronic Fatigue Syndrome” serves to belittle a condition that has cost several sufferers their lives. Many still insist it’s a purely mental illness. Others deny it altogether. “ME is often invisible,” Lucy tells me.

“But that doesn’t mean it’s not real”.

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*In the interests of anonymity, names have been changed

 

If anything in this article has affected you, there are many services you can use

Linkline – 01223 744444

Samaritans – 08457 909090, 4 Emmanuel Road

University Counselling Service – 01223 332865

 

The following websites offer more information on CFS/ME:

www.kcl.ac.uk/cfs

www.ayme.org.uk (specifically for young people)

 

To donate to the ME Association, go to www.meassociation.org.uk/