Humans of ME/CFS

My illness began with mono, which started five weeks after I filed my dissertation. I believe the two events are related!! I had a great new job at a university and two small children. I simply couldn’t stop and stay home to get well. So, I pushed on, but the fatigue continued to plague me. I was able to continue teaching full-time for three years and one more year part-time. I loved it, but I could not keep up with the other responsibilities of my position (research, committee service). So, I had to stop working.

Along with my income, I lost my independence, self-esteem, and most of my family. They could not understand why someone who had the time and energy to earn a Ph.D. would suddenly just stop working. Clearly, it had to be in in my head. About two years into my illness, I got to meet a well-known ME/CFS researcher when she was in town to give a talk about ME/CFS. I listened to other people who said they had been ill for twenty years. I remember the tremendous hubris I was carrying, thinking that “I” wouldn’t be ill for that long.  Well, it’s been twelve years now. I haven’t worked in over six years. I had to leave my beautiful city, because you don’t get to live there unless you’re working more than full-time!

Now, I live very simply and quietly. I laugh when I think about how much I was doing back when I had mono. Now, I find my life so small. I cannot do very much before I am exhausted and the day has to end. That means my housekeeping leaves a lot to be desired, grocery shopping is very hard work, and any kind of social interaction with others happens very rarely.  I left California to come back to Michigan, where I grew up. Housing is quite inexpensive here, but rural areas also restrict choices in grocery shopping and access to medical care. But, it’s OK. Affordability had to be my top concern. I find myself encouraged by the increased media attention on our illness this year. I am thrilled by news of new research.

I have not lost all hope, but this life is very, very hard.