What It’s Like to Live With: Chronic Fatigue Syndrome
What It’s Like to Live With explores the stories of people who see and experience every day a little differently.
I had been feeling like something was awfully wrong with me for four to six months. I had difficulty walking, getting out of bed, even just sitting up straight.
Then, I got diagnosed with myalgic encephalomyelitis, or chronic fatigue syndrome (CFS). I was 33. It was a difficult diagnosis to come to because there is no test or procedure that can confirm it. When you have CFS, you feel fatigued all the time, and no amount of sleeping can help you cure it.
For me, it began suddenly, after I got the flu. Initially, when I kept complaining about feeling tired all the time, or not being able to concentrate on anything, I kept being told that I was overworking because everyone’s always seen me as a hardworking girl. Or told that I was depressed.
But when the fatigue started interfering with my daily activities — not being able to work, or drop my kids to school, not being able to help with their homework, or something as simple as not being able to do groceries — I knew the problem was more than psychiatric. And I had to call my parents to live with me.
Since the diagnosis, I often experience a sore throat or flu-like symptoms, muscle and joint pains, and headaches. No matter how much I sleep, it doesn’t feel refreshing, but now I’ve observed that a minimum of 12 hours helps me get through the day a little bit.
I was into yoga before, but I’ve had to stop it because any kind of physical activity makes me very tired. That’s the reason I can’t even go for walks. Even cooking for 20 minutes makes me want to sleep immediately. I have even had to stop driving because I’m sleepy all the time. And that’s the hardest part — you’re sleepy, but you don’t get sleep; some people like me who have CFS also suffer from insomnia.
Living with CFS is like learning to navigate the contradictions: all you want to do is sleep under the blanket, but even the softest of blankets can cause pain because it feels like the moment you touch the skin, it’ll pain. You don’t look sick; people would say, “You can at least have a bath, or brush your hair, or change your clothes,” but even simple chores as these become difficult. My mother has had to bathe and dress me; dad has had to help me walk out of the room at times.
I had to quit work. Luckily for me, knitting had always been a hobby, so when I’m not sleeping, I knit soft toys, pen stands, even sweaters for babies, and my mother sells them among her group; word-of-mouth publicity has helped a lot. Unfortunately, I get many orders, but I can’t keep up with them because it’s impossible for me to do a lot in a day. Often, I can get to knitting only once in two days, and so it is picking up very slowly. But it keeps me distracted, and I feel nice that I’m being able to be productive because I’ve lost touch with a lot of people.
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I started dreading social gatherings because people would keep telling me I’m depressed, or tell me how can I feel tired without doing anything. It was demeaning. I felt like I had to constantly pretend that things are fine, and that pretending got really exhausting.
I’m sure it’s taken a toll on my husband and the children, too; I can’t be adventurous and say yes to everything they want to do. They have to adjust and tweak their plans — so many times they’ve had to go alone while I call my mother over to help me with things. In the absence of any treatment, all I can do for now is make some changes in my lifestyle, like cut down on caffeine, introduce exercises very slowly back into my daily routine, treat existing pain with medicines — but these are all temporary. The most effective treatment is to learn to live with it. The earlier you accept it, the better it is.
This interview has been condensed and edited for clarity. As told to Anubhuti Matta.