Humans of ME/CFS

On Feb. 5, 2013, I began to notice that I was feeling unusually tired. I was a fit, healthy 21-year-old. Within days, I developed what I thought was an ordinary viral infection, albeit a particularly nasty one. My whole body was in pain, my throat was sore and swollen, and I could barely stand to keep my eyes open. I expected to be better in a few days, a week at most, but a few weeks later, I was no better, and a blood test confirmed glandular fever. I was in my final year of university at the time, writing my dissertation.

Over the coming weeks, the worst symptoms faded, but I was still exhausted, barely able to walk without feeling faint, and my head felt like it was filled with sludge. I battled through and finished my degree, even accepted a job offer, not even considering that recovery was not on the way. I struggled at work, and after a full day in the office I would collapse at home, sometimes just about managing to feed myself and do a few basic tasks. Other times, I would just sleep until it was time to go back to work in the morning. I felt like I had no life. Several times I went to my GP about how tired I was feeling, and was repeatedly told to come back if it didn’t get better. Blood tests all came back normal.

More than a year had passed when I decided to go back to university. I felt desperately unhappy in my job. I continued to struggle there, and the doctors I saw decided I was simply “depressed.” When I tried to insist that my mood was low because I was so tired that I couldn’t do anything I wanted to do, one even told me I was “in denial.” I was in tears because I felt like no one believed me, which only seemed to confirm their assumptions. They didn’t seem to understand that I had plenty of motivation and enthusiasm for life (unlike a depressed person), I just didn’t have the energy. I was put on antidepressants, which not only failed to treat my fatigue, but caused all kinds of unpleasant side effects.

It was only due to luck that I finally received help. A locum (a doctor who only works at the practice one day a week) immediately recognised what she was seeing, and referred me to the specialist chronic fatigue service. Two and a half years after becoming ill, I received a diagnosis. You wouldn’t think being diagnosed with a debilitating chronic illness could be a good thing, but it was a relief to finally feel like I had been understood. A diagnosis hasn’t been the end of my struggles, but it’s been so long now that I have learned how to pace myself, limit my activities to a sustainable level and come to terms with living this way. I am hopeful that I will yet recover.