What It's Like Returning to Work With Myalgic Encephalomyelitis


Returning to work following two years of being almost permanently housebound was not a decision I made lightly. As with most things I do, I put a lot of thought into it and weighed up how working could possibly affect me and how I could be most productive, without making my condition worse. I searched for suitable jobs for a couple of months, knowing I wasn’t fit enough at that point to return to the workplace, but then I came across a job in social care. The job wasn’t in my preferred area, but a position I felt I could add something to, it was self-employed and part-time. This meant I could work hours that suited me and manage my work load carefully, enabling me to find my baseline and build from there. I began on very limited hours, 10 hours a week.

I worked in this role for a year, slowly building up my hours and working within a “normal” work day and work week. Previously I had written up notes and assessments at all hours of the day and night, depending on how bad my insomnia and fatigue were, and booked all appointments for after 11 a.m. to enable myself time to get ready in the morning, which sometimes took up to three hours to shower, take meds, eat and dress. I often had my laptop on my bed, on admin days, which I wouldn’t even getting dressed f0r.

When I felt I was strong enough to look for a more permanent job, I made myself get up at the same time every day. This sometimes meant I was back in bed by 3 p.m., with complete exhaustion, brain fog and pain, but it was progress!

I managed to get into a routine, but there is something important to note here – I was only able to do this as the myalgic encephalomyelitis (ME) was manageable. At my worst times, I could not have done this without ending up in hospital.

A year into working part-time and self-employed, I found a post in a social work team, with some people I had worked with “pre-illness.” This gave me hope as they knew my commitment and work ethic, and I hoped they would take a chance on someone who had not had a “proper job” for almost three years. Thankfully I was successful at the interview and was appointed.

The role was a much lower paid position than I had been in prior to illness, but I felt it was what I needed. I was confident I could do the job well. There were not constant pressures of previous roles and it was a role that did not involve any out of hours work, giving me a structured day, with clear rest breaks and allowing me to plan the rest of my life – including lots of rest and looking after myself out of work hours. It also helped that I was open about my illness during the interview and my possible limitations. This meant arrangements could be made for me to work from home, if pain and fatigue got too much.

On some days, I can work, but not if I’ve had to use that energy to get washed, dressed, ready for work, drive to work, walk from car park to office, talk to people when at work. Stimuli, such as noise, light and movement can take up precious energy and cause migraines on days that I am feeling more fragile. However, that does not stop me from typing up assessments, replying to emails, etc., from home. Also, sometimes the pain in my hips is so bad that it is a struggle to put my foot on the ground. So again, working from home means I can still work, but from a position that is comfortable.

Working has given me a sense of purpose. I don’t have children, so work has always been important to me. I feel that in my job I have the opportunity to help others change their lives for the better. I enjoy it and like the interactions with others. I’ve always been ambitious, so to feel that my career has taken a step backwards has been difficult, but the ability to work has overridden any negatives!

Working does mean that most of my energy is spent on that. I have to make sure I am fit to work. This means resting and looking after myself properly, eating well, spending time in natural light and listening to my body have meant that I have managed to work full-time for the last year. I have had to make sacrifices. I don’t see friends and family as often as I would like, I certainly don’t go out as often as I used to, and when I do its much more sedate than “pre-illness.”

Now I tend to invite people to my house, and if I’m in my pajamas then so be it! If I do go out, it’s normally during the day at weekends, or for meals in the evening, rather than pubs and clubs. This is because the noise and lights in pubs and clubs are often too much for my senses, causing vertigo, migraines and pain in hips if I can’t sit down.

I am very fortunate as I have some very good friends, a great husband and good family, who have really learnt to understand my illness and how they can help me. They do not make me feel guilty if I can’t do something, or cancel plans at the last minute. I do think I help them by trying to remain positive but also being honest about my limitations.

Unfortunately not everyone understands ME. This has hindered me from being completely honest with my colleagues and casual acquaintances, but hopefully by writing this it will help to increase peoples understanding and allow them to ask questions.

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