I've got a mate. He's called Lee. Lee, like some other people in the world, lives in Plymouth. Lee, also like some other people in the world, has an illness. Like most people with an illness, Lee wants a life as good as it can be. He wants to reach and touch his peak, not loosen his grip on the mountain.
I've got a mate. He's called Lee. Lee, like some other people in the world has Myalgic Encephalopathy (M.E)
Before I wrote this, I didn't really know what M.E was. For the record, M.E is a physiological and neurological disease in which the affected will have chronic fatigue (which is not improved by rest, prolonged or otherwise.) This isn't a case of "being sleepy" - this is so much more. You can't think. Can't move or can't act. Everything is a danger to your physical wellbeing. Noises and lights that stimulate the brain cause you immense pain. Or as Lee described to me "even thinking causes huge pain."
As well as the above, M.E also affects the nervous system of the sufferer, meaning it can cause long-term illness or even disability. Currently 250,000 people in the UK alone are diagnosed with M.E.
My mate Lee can't do five days in work. He can't decide to walk into town. And he certainly can't decide to walk back from town, either. Having this illness changes your life forever. Having this disease, you never truly recover. That is the reality of Myalgic Encephalopathy.
Having been diagnosed with M.E in 2000, it has been impossible for Lee to lead a life fully reflective of a young man with the will and desire to push through his struggles. Lee is a young man who doesn't want to struggle. But he wants to push.
"I have always tried to work throughout this time despite suffering with constant symptoms and payback for my activities. I was only ever able to work part-time for limited hours a day up until 2008, when I tried my first ever full time job - this lasted 7 months before I was unable to perform the role. Falling asleep, unable to concentrate on the tasks in hand, chronic debilitating headaches, unable to maintain my personality (my job at this time was ambulance care assistant, so required me to be on the ball, driving and communicating with patients.) I was unable to do this safely" Lee said.
Pushing through any illness is tough. Have you ever tried to do anything when you have little energy, no stamina and feel mentally drained? I have, and you know what usually happens? "Ah, forget it. I'll just do that tomorrow. I'll feel better tomorrow."
Tomorrow for Lee and any other sufferer of M.E is the same. The same physical inability and the same mental challenge.
In trying to sculpt a normal life, Lee completed a degree in Physiotherapy, earning a 1st in this subject whilst hurting mentally. Hurting physically. I cannot, as an aspiring journalist with no degree due to laziness and a love for gin, tell you how hard it is to complete a 1st in any course. In anything. I didn't have the mentality for university so I am in no way qualified to impress upon you the ability and toughness it takes to complete a degree. With or without being ill. So here's Lee:
"I decided to try and retrain - I did physiotherapy at University of Plymouth - and again pushed my body and mental health to the limit, ignoring my M.E and the lack of life I was having due to its impact in pursuit of end goal, a way out of this hell. However, despite this constant pressure and impact on my body and despite gaining a 1st I suffered further setbacks in my health and have been on a downward spiral since."
As the reader I have no doubts you can see that Lee, my mate from Plymouth, with a 1st in physiotherapy and Myalgic Encephalopathy wants to push on. He wants to work.
After finishing university Lee got a full-time job, yet after a year, his mind stopped him in his tracks and his body didn't allow him to continue. He had tried to forge a normal life, but this was impossible. Something needed to give.
Lee gave, but he never gave up, and his employment allowed him to continue on staggered hours of 25 per week. This was gladly accepted, but the hours continued to fall. 20 hours per week. 16 hour per week. Lee's employers had bent, but now they had broken, and unfortunately he had to give up his job because every day, in every way, Lee wasn't getting better. Tiredness and insomnia. An oxymoron in real time. He had the drive to succeed, but he was no longer the driver. He was a passenger in his own body. You would imagine Lee felt like he had hit rock bottom. He hadn't.
The reason I wanted to write about Lee's story was because I can't help but admire a person who knows the brick wall is in the way, but tries to break it down anyway. I also cannot stand the social injustice that has followed him around like a shadow. I can't stand for it. We shouldn't stand for it. That's why I wrote about his story.
Upon finishing work, Lee realised he needed money to survive. Not to live but to be alive.
With a GP's note in hand qualifying his lack of employment as long-term illness, he applied for Personal Independent Employment. This is funding for people with illness and disability to help them will costs of living. During the assessment for this he was asked questions like "how far can you walk?" and "how are you feeling?" - Subjective questions, and questions that didn't take yesterday into account. Or tomorrow in to account. Questions asked on a day that an M.E sufferer managed to get out of bed. On their best day, not their worst day. The answer to Lee's prayers wasn't what he needed.
Lee was rejected for PIP.
Advice from the Citizens Advice Bureau was not enough to succeed in an appeal. Dismissive statements like "maybe you have a sleep problem" or "I'm usually tired after a late-night cup of coffee, maybe that's it?" (These lines are not made up, but actual comments passed by a team of independent judges in an appeal team. To a man with an illness 15-years diagnosed) were slung at Lee. Mud thrown not on a playground, but in an appeals court.
Upon being declined for PIP, an application was worked over for access to ESA - Employment Support Allowance - an amount of money given to someone with a long-term illness or disability to top-up their earnings and allow them to still work. To allow them to stimulate themselves socially and to give them a stronger, keener grasp at living a stable life.
This application was rejected. Lee was told his only choice was JSA - Jobseekers Allowance.
To cut a long story short, upon going to apply for JSA, Lee found that, because he had a long-term illness, he could not get JSA. The only way for him get this funding - £68.00 per week - was to lie about his illness. The very illness that is keeping him from putting all of his hard work, his graft and his knowledge to fantastic, beautiful use.
Our government and the very people who are here to protect its citizens are allowing Lee and thousands of other people to continue suffering without the help they deserve. Help isn't always costly. Lee wanted help into employment. He worked hours, days, months and years to his fullest but couldn't go on any longer.
The help he needed wasn't just financial. It was social help and it was emotional help. Being questioned by officials whilst appealing a wrong decision isn't just them doing their job - it's insulting, derogatory and it's wrong. To be ill or to be disabled isn't to stop wanting. Wanting to work and wanting to succeed. Wanting to challenge the boundaries but with help if these humans' balance is lost. This story isn't a story about falling at the first hurdle, it's a story about jumping the fences put in place by the very people here to protect us. All of us. Able bodied or otherwise. Able of mind or in need of support. This is a story all too common.
You really cannot dismiss the utter incompetence of an establishment who are happy to stand on the vulnerable to reach those who are fortunate enough to stand at the top.
This is a true account of a sufferer of Myalgic Encephalopathy. This is a true account of social injustice and this is a true account of our society.
This is my mate Lee. Plymouth resident and battling Myalgic Encephalopathy and social injustice.Suggest a correction