Published in InterAction 73, Autumn 2010
M.E. really can affect anyone, from any walk of life. Clare Ogden compiles some of your stories telling us what you were doing when you became ill.
A is for armed forces
Leanne was in the RAF. “I used to be physically active and would go sailing, skiing and snowboarding but to name a few. I used to fly airplanes and helicopters, and was planning to study for my private pilot’s license. When I became ill after a back injury and associated stress, my doctors didn’t believe my medical complaints and thought I was putting it on.
“I became distressed that I was losing my mind. My doctor told me it was all in my head and that I should pull my socks up. I couldn’t make sense of this illness; I called it the dark passenger. I now look back through my diaries from before my diagnosis and I had all of the symptoms.
"This illness sucks, it really does, but my life has changed, and not necessarily for the worse. M.E. has encouraged me to re-evaluate my life. When I had grieved for the loss of my old life, I started living my new life. I feel as though I had a blank canvas, a fresh start. My life is different now in many ways, but I am thankful for every day that I am alive and well.”
B is for bucket chemist
Elspeth worked in a paper mill as a chemist. “Within my own mill I would be what we affectionately call a ‘bucket chemist.’ I wore a boiler suit and wellies and liaised with production staff, doing anything from measuring flow rates of chemicals to report writing and meetings.
“I developed viral pharyngitis and was off work for three months then returned, although not well. My brain started to refuse to work and I was unable to remember how to do the calculations I’ve done all of my working life. Four months later I got another viral attack and this time I got full blown M.E. I was bed bound, photophobic and couldn’t stand people or noise. I was made redundant and have not worked since.”
C is for civil service
Jenny was employed in the civil service from 1971. “In 1979 I had glandular fever, was off work on sick leave for over a year and was left with what was later diagnosed as M.E. The civil service was good at keeping my job open for me, but after a year it was obvious they were debating how long this would continue.”
D is for domestic cleaner
“I was a domestic cleaner at the time, cleaning six people’s houses per week, including my own,” recalls Nicky. “I would also do two people’s ironing. I contracted influenza but did not get better. Because this work was very manual, there was no way I could carry on doing it. “Some of the people who employed me understood, others were annoyed that I had to leave. However, the biggest problems have been with doctors and people in the medical profession, who were extremely annoyed and impatient with me, despite my being so very ill. They kept telling me it was all in my mind, yet I was displaying very real and violent physical symptoms.”
E is for executive
Clare studied Mechanical Engineering at Sheffield University for four years. “Then I became a sales executive for a steel stockist and also a DJ on Saturday nights. I am now completely unable to work even though I would love to go back to my job – I am still in contact with my main employers, the steel company. In the meantime I am studying web applications part time through the Open University when I am well enough.”
I is for interactive TV
“My M.E. worsened to the point where I couldn’t do a regular job,” says a member who wishes to remain anonymous. “I was head of interactive entertainment at a large independent TV production company at the time, a flakier job 24 InterAction 73 Autumn 2010 than it sounds, which involved a lot of travel and sustained periods in the US.
“The company was supportive but that was a mixed blessing: combined with poor GP advice it meant I used a great deal of willpower to carry on working as normally as I could at a job I didn’t in fact care very much about or enjoy. Continuing for as long as I did certainly had a detrimental effect on my M.E. Even with positive attitudes at work I was aware that some colleagues thought I must be neurotic or malingering; thankfully that p***** me off enough to stop being grateful and resign.
“I’m now an award-winning and reassuringly busy screenwriter, which I can do from bed (I’m currently in my first serious relapse for some time). Financially it was scary for the first few years but I wouldn’t have been fit to make a living any other way: desperation made me braver creatively, I think.”
L is for landscape architect
Susan says: “When I first collapsed, I was working for an environmental and community action charity as their landscape architect. I felt that at no time did my boss treat me with any understanding of my condition. I was glad to leave.
“I eventually got a diagnosis of M.E. in July 2003. I have gradually improved but am still conscious of how delicate that improvement is and doing too much can quickly get me back in bed. I never want to be subject to an employer again. I enjoy what I can do and am grateful not to be any worse. But I do aim to be a well-known artist some day – I’m working on that very gradually – and maybe I will one day earn some money from it!”
M is for manager
“I first became ill in 1998, lasting for two years,” says Clifford. “During that time I was not diagnosed with M.E., but on reflection all the symptoms were there. I was the technical manager in a small food company supplying the supermarkets, with responsibility for food safety, technical liaison with customers, product development, quality control and assurance and health and safety, in a company that operated 24/7. Whilst ill I tried to coordinate things from home, in honesty I could not handle it.”
N is for nursery nurse
Frances says: “Before getting M.E. I was a nursery nurse for 18 years. When I became ill with M.E. I had recently changed my job to become a senior residential social worker. It was a very posh title but I wasn’t a social worker at all. I was working with disabled teenagers and young adults who needed respite care so the families could have a breather for one night a week.
“It was a very physical job and the management made it the most stressful job I have ever had. I lasted three or four months before becoming ill.”
P is for physiotherapist
“I was 22 and working as a physiotherapist on the intensive care unit,” recalls Rebecca. “I had plenty of other hobbies such as going to the gym four times a week, as well as playing the trumpet with a local band.
“I caught a chest infection in the winter and had to have antibiotics and steroid tablets. Six months down the line I was diagnosed with M.E. I had two weeks off work and then worked part time for a couple of months and built up to full time. Although I was never able to return to the gym or band, I have continued to progress in my career as well as getting married to a wonderfully supportive husband.”
R is for research fellow
Anna became ill half-way through her PhD in physics. “Initially I recovered enough to finish the practical laboratory work, but while writing my thesis I became steadily more ill. I started my first job as a post-doctoral research fellow at the University of Southampton and quickly discovered I was not well enough to work full time.
“I somehow managed to work from 9am to 3pm, but felt like a zombie all day, and would spend much of my time staring blankly at a computer screen. I would often make mistakes – a lot of the practical work involved very delicate and careful work and I couldn’t maintain the concentration needed.”
S is for social worker
“I was a social worker, and I tried to stay in work for much longer than was good for my recovery and the organisation,” says Jacqueline. “I let down clients, colleagues and my supervisor for an extended period, before asking for them to medically dismiss me.
“I did not find that my line manager had any imagination about my fluctuating condition; she sounded suspicious when I described episodes. I did get a fabulous service and advice and help from the organisation’s occupational health doctor, though.”
T is for teacher
“I’m blessed to be able to say that I have recovered from M.E.,” says Heather. “I was diagnosed just over 10 years ago, after struggling to get back to normal from a string of viral illnesses. At the time I was training to be a primary school teacher and the doctor put my constant exhaustion and flu-like symptoms down to post-viral fatigue and tiredness from studying. It soon became apparent that something was wrong, I just knew I wasn’t myself.
“It took a change of doctors to finally get a diagnosis. I had no choice then but to give up my teaching to concentrate on getting well again. The worst part was the frustration of having to stop doing what I loved and the fear that people would think I was lazy. I’ve now learnt that living with M.E. is an achievement in itself and something to be proud of!”
Jennifer was also a teacher. She says “Looking back on it, I probably had M.E. for two or three years before I was diagnosed. After a year of absence and an attempt to return to work, my union and occupational health were involved in supporting my return, but my employer clearly wanted someone to do the job full time without any compromise.
“Had I been diagnosed at the time, I would like to think I would have been treated more fairly, but I was recommended to resign from my job as a teacher, which I did.”
U is for union rep
Marie first became ill on holiday in the Borders of Scotland. “At the time I was working as a college lecturer teaching psychology, and as a union branch officer.
“I had a flu-like illness which resulted in pneumonia followed by five months of chronic fatigue and muscle pain. After a short period off sick I tried to carry on with my job but all my previous resilience had gone.
“As a union representative, I knew perfectly well that I had a disability, but could not work out what ‘reasonable adjustments’ to ask for that might actually help me. The demands of my part-time job still fluctuated and my quality of life was poor.
“Three years ago, I had an epiphany and resigned. Something told me I would never recover until I put getting well in front of staying employed. After being professionally employed my whole adult life I found this very difficult emotionally and financially. Three months ago, I rejoined the workforce as a self-employed health and safety trainer. I am not fully well and working only a small number of hours, but at least I am responsible for managing my workload myself and so far I’m OK.”
V is for valuer
“Before my M.E., I never had any ill health,” says one member. “I had a good career in banking and before that I was a manageress in sales and a residential valuer.”
Z is for zoo keeper
Kerry says: “I had just turned 21 when I first began to show symptoms. At the time I was finishing my degree in animal behaviour while working part time as a primate zoo keeper, as well as looking after imperial scorpions and poison tree frogs for my dissertation.
”I went from finishing my exams to working full time at the zoo. I loved this job and found it very hard when I became less able to do it due to being so tired.
”Then it happened. One day I just couldn’t lift myself out of bed. I had no energy and felt terrible. Finally I was told I had been suffering from glandular fever. I ended up in hospital and was drip fed. This was my worst and it took over two years to get through the bad times.
”I am now a support worker for children and young people having been unable to get back to the original fitness and ability I had as a zoo keeper. I am much recovered but still find I suffer bad days. I have certainly learnt to listen to my body!”
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