Myalgic Encephalomyelitis: Life of a sufferer.

“It is like having the constant flu and stomach bug all in one go. But it never goes away. You have lack of energy, you feel nauseous a lot of the time, you vomit often, you get migraines, sore throats, sore glands, dizzy spells and so much more. You don’t get to live like a normal person.”

These are the words of 18-year-old Emma, a sufferer of Myalgic Encephalomyelitis, more commonly referred to as Chronic Fatigue Syndrome, or ME.

In the medical community, ME is a seemingly mystery illness, with 250,000 British people being adversely effected by it, and with the condition making it almost impossible to live a ‘normal’ day to day life, and there being no direct agreement from medical researchers on what triggers the condition.

Emma has been suffering from ME since 2011, which she believes has been triggered by her experience with the fairly common illness, Glandular Fever. Most people experience Glandular Fever for a very brief period, however for Emma, it was slightly more complicated.

Her Glandular Fever started in 2010, and lasted a whole year, with her diagnosis of ME taking place a few months later. Glandular Fever has been a suggested cause for ME, alongside other viral and bacterial infections, with the NHS taking notice of this suggested theory. Of course, having already felt awful with a longer than usual fever, it was very hard for Emma, and her family alike, to pinpoint an exact change, and why it took over a year from her first feeling symptoms to being diagnosed. However, this was mainly due to the overbearing symptoms of Glandular Fever, and it would be harsh to blame the medical profession for this.

“Most people can’t go to work or go into education full time and some people have to fully give up, like me. Doing too much can make symptoms a lot worse, you don’t even have to do a lot for that to happen.

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“A simple search can bring information of CFS/ME – but no search can represent the true impact on life”

“Not only does this illness take your life from you, but it also causes depression or anxiety, or both. Isolation can also occur if you’re like me and can’t often leave the house. Therefore, all you have is your family and not much of the outside world,” she says.

Even with family, it can still be a strenuous bond. Emma, and many other sufferers, realise the toll it can take on family emotionally, as well as friends. However, despite rough days where tensions can be high between family, due to the difficulty Emma may have engaging in activities which may seem fairly light, Emma does keep a positive bond with her family overall, looking after the large quantity of family pets, many of which provide her with great happiness in darker times, times where friends may have been, should they have not left Emma when she left her school.

The stigma around CFS/ME has changed over the years. Previously, medical professionals have refused to acknowledge the above as a real condition, and it is this lack of recognition that has made it difficult for sufferers, with the public taking the same stance as this minority of doctors.

Having had to leave full time education in the second year of secondary school, she would attempt to go to school on days when the illness was fairly tame, and each time would be met with fellow students ridiculing her.

‘Skiver’, ‘faker’, ‘attention seeker’ all having been terms used by her peers, whom, like a minority of medical professionals, don’t believe the illness to be real, with no real exterior signs of it showing.  The name of the condition also tends to mislead those without it, as the NHS tends to use Chronic Fatigue Syndrome as the main label, therefore suggesting to those without interior knowledge that it is simply tiredness.

Despite this, Emma has still managed to gain a handful of GCSEs, albeit with minimal support, which is something that strongly frustrates Emma, and thousands of others struggling with the condition.

“My opinion of the support given to sufferers like me is that it is poor – reason being there’s not much help going around and for the 6 years roughly that I’ve had it, I haven’t had much at all. Any “help” that I did receive wasn’t helpful to me and it didn’t guide me to getting any support or help, I’ve always felt like I don’t matter and that I’ve been pushed aside, I know a lot of other sufferers feel the same from following various Instagram accounts.” Unfortunately, due to the illness, and much to her own frustration, she has not been able to take her education to a further level after her GCSE’s – a potential suggestion that maybe something such a home taken A Level courses could be an item to help sufferers such as Emma, to ensure that post illness – if it ever subsides to a reasonable level – positive work would be available to intelligent people, who have just been unfortunate with their health.

It is clear to see why Emma has frustrations. In the first few years of her suffering with ME, she would often be invited in to have appointments with the NHS to see how her illness is changing. However, the specialist facilities Emma had been directed to are based in Lowestoft, which is a journey of over 100 miles by the time she has gone there and back – something which is exhausting for a sufferer like Emma, and can even leave someone with the condition travelling this far confined to their bed for the next few days. This distance of travel is a large surprise. Considering the size and quantity of medical facilities in Ipswich, her hometown, it is questionable as to why facilities for such a troubling condition aren’t available closer, for example in Stowmarket, Bury St. Edmunds, or Colchester – however this might change after the joint merger of Ipswich and Colchester hospital recently.

As Emma states, this is a shared view with her peers on social media, making bonds, friendships and supporting each other, in what seems to be a lack of support around the illness from those who are not suffering.

The lack of support in the current day, however, is surprising.

In 2006, UK Parliament declared that an investigation had shown there is a lack of support for ME/CFS sufferers. As well as this, a 2005 study showing that 48% of UK doctors did not feel comfortable diagnosing the illness, 41% felt uncomfortable treating it, and – maybe most surprising – only 72% of doctors accepted the illness as ‘a recognisable clinical identity’.

Further research is funded into ME, with many charities aiming to raise funds, and there even being a world ME recognition day on May 12th, however, with only a fairly small minority of people in the UK suffering, help is naturally going to be few and far between.

“On a good day, I’d be able to go to the supermarket and help my mum with food shopping, maybe clean my room and do a little task or chore. On a bad day, I would more than likely be stuck in bed not leaving the house, not doing anything because most things are too difficult for me on my worst days.”

The restrictions on life for Emma, and sufferers alike are clear.

With lack of energy and wellbeing to be able to socialise, work, or study, it makes it a struggle to establish what those would describe as a ‘normal’ social life. Emma attempts, where she can, to engage in activities which will help to bring some happiness, without exhaustion.

Looking after multiple animals, and breeding rabbits, is an activity Emma has engaged in for a few years now, in order to try and stave off loneliness and boredom, however, where it does bring an element of joy, even a day of cleaning after the animals can lead to “bad days” of the illness.

So, what kind of future lies ahead for a young sufferer of ME?

To an extent, it is the hope of getting better. There is no set out cure for ME/CFS, only the fact that generally, ME will get better over time, to the point where a sufferer will completely recover, or have a vast majority of good days over bad periods.

Treatment depends on the sufferer. Cognitive Behavioural Therapy (a form of mental treatment), Graded Exercise Therapy (a form of physical treatment), as well as general activity plans, diet plans, and medication to relieve shorter term symptoms. This is specific for each sufferer, and tends to be setup in sessions with specialists. However, like in Emma’s case, sometimes the help gained isn’t worth the travel.

The outlook for Emma is an interesting one.

According to Harvard Medical School, most sufferers will have their worst symptoms in the first 2 years. However, this has not been the case for Emma, with the symptoms persisting for 6 years. A small percentage of people make a full recovery; however, it is rare for a case of ME/CFS to be so strong for over 5 years.

It is a question of if, rather than when, unfortunately for Emma, who has been pushed out of a regular lifestyle for a young adult.

Despite this, in a touching final word from her, she has admirably held on to belief that she has the capability to live a fulfilling life.

“I try and have a positive outlook on my illness by having hope that one day I’ll be able to have my life back, to live again. To have friends, socialise, not constantly feel the need to go to the doctors or stay in bed all day. Although this illness has ruined a lot of things for me and has stopped me growing and accomplishing new things, it has made me see some things in a different light. To never take anything for granted and to live life to the fullest – in my circumstances, as often as I can. Life is short, and life does throw obstacles at you, but I try and believe that one day you can overcome them.”

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