What It’s Like Returning To Work With Myalgic Encephalomyelitis



By Marie Johnson in The Mighty.


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 for.


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