This article was written by Ruchira Sharma, on 14th November 2017, for the International Business Times.
Chronic fatigue syndrome: One woman’s debilitating experience with ME
Sufferers can have constant headaches, muscle aches, insomnia and memory loss, among other symptoms
The illness myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome, is bewildering for a number of reasons. For one, there are thought to be around 250,000 sufferers in the UK, most of whom are women. Women account for four times the number of male sufferers.
While ME follows other autoimmune illnesses in that more women are diagnosed with it than men, very little research has been done to show why.
In addition to this, since the illness was first identified in the 1950s, doctors have been unable to properly understand the root cause of it. In fact, early cases were deemed “hysteria” or “yuppie flu” – a problematic start for a much misunderstood illness.
Hannah Price, 23, has had ME since she was 11 years old. She tells IBTimes UK:
“Invisible illnesses are hard for people to comprehend, because from the outside I look fine, so I’ve had to deal with a lot of Ignorance and ‘it’s all in your head’ – but this is changing and makes a huge difference to my outlook.”
While they might be “invisible” to people on the outside, ME symptoms range from just about being able to do everyday activities but with some difficulty, to needing a wheelchair and being incredibly sensitive to light or sound.
Often people with “invisible illnesses” or disabilities argue that people fail to accommodate them fairly or that their experiences are often met with ignorance or disbelief.
Hannah has found that “people are definitely less understanding because they can’t see [see her illness] and are more insensitive of what they comment” on.
She says: “I think its a rubbish excuse though because if you properly look at someone with ME, you can see the bags under the eyes, and the slight wince of the constant pain they are in. I think people need a bit more understanding about it.”
Like many people with ME, Hannah developed it after contracting a virus that she never truly recovered from.
In a piece she wrote for The Telegraph last year, she noted she went from a sporty young girl to having “a relentless throbbing forehead, crippling on a bad day and still present on a good day, an ache in every muscle and joint that is amplified by any exertion, a mind fog that makes concentration a constant battle, and the memory equivalent to that of a goldfish. Most of all, overwhelming fatigue – completely unresolved by sleep.”
Some of her symptoms have included being unable to move from bed and change the DVD if she was watching a box set.
Having lived with it since she was 11, she says that she is far more attuned to her body and the illness now. She’s currently working as a web editor and her employer has been incredibly understanding of her condition. Things like working from home once a week have made a positive impact on her ability to work.
In the Telegraph article she shared how the prospect of going to university was one that originally would have been one met with pessimism and scepticism and how she had defied the odds by studying a maths undergraduate degree.
A year since the article her outlook isn’t as positive of her university experience.
“University is a tough one for invisible illnesses. Doing a maths degree meant my personal tutor wasn’t approachable or supportive or really knew who I was. This meant when I had major flare ups and was directed to my personal tutor, I no longer felt comfortable talking to them so suffered in silence.”
This doesn’t have to be the case for everyone, however. She wants university staff to adapt and educate themselves on ME.
“Universities need to think about pastoral training for staff that are contact points for student well being. I wish I had a personal tutor that was trained and then an academic tutor for course problems.”
Whilst there are evidently ongoing issues in how we help people with ME integrate fully and easily into various scenarios, the conversation on the illness has definitely improved.
With films such as Unrest, a documentary on ME that describes itself as “a vulnerable and eloquent personal piece that is sure to hit closer to home than many could imagine”, awareness around the illness is undoubtedly improving. The next step now is changing how we deal with it.
Images used are not those shown in the original article, but have been posted with kind permission from Hannah Price.You can follow Hannah on Twitter @hanhanprice