When My 4-Year-Old Inadvertently Summed Up What It's Like to Live With Chronic Illness

My 4-year-old has been sick for the last few days. There has been a lot of vomit, trips to the toilet and lethargy. It has really taken its toll on her little body, but there have also been a couple of moments where she has gently played and seemed to be getting better, until another wave of sickness hits.

My daughter has big emotions and loves to explain what she is thinking and feeling. In the midst of caring for her and listening to her, it struck me that her thoughts, feelings and explanations resonated strongly with me. I have been living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for almost four years now, and she was talking my language.

She came up to me looking pale and said, “Mum, I’m sick.”

“Where do you feel sick?” I asked.

“All over me, every part of me is so so sick.”

I felt like replying “me too.” A common misconception is that ME is just about the fatigue and feeling tired part. Most days every part of me feels so sick all over. There are a few hours or sometimes days where I am having a good run, my symptoms subside and I can get out of the house. These are the islands of hope I cling to in the ocean of ME/CFS pain, fatigue and brain fog.

I heard her cries when she awoke in the morning after being sick the day before. When I went to check on her she was in tears and said, “I want to get up but I can’t do it.”

Tell me that doesn’t sound like the most perfect explanation of ME/CFS you have ever heard. It sums it all up so simply.

On the morning of her friend’s fifth birthday party, she woke up and vomited again. We explained she would have to stay home to which she said, “OK. I need to stay on the couch and just watch TV.” However, a few hours later she said, “I think I am better and Dad can take me to the party now.” When we explained that the party had already started and she still couldn’t go, she responded with a flood of tears and said, “this is the baddest day ever.”

I have lost count of the number of events and activities I have been unable to attend. I often think “this is shit” (the adult version of the baddest day ever). I miss even the simple things like housework, taking a walk and going to work that I used to be able to do. Sometimes I am in tears too… it hurts having to miss out. 

As she got better she ventured outside to play with her sister and dad. She was not as well as she initially thought, and after a few minutes she was back in my bed explaining to me, “I was outside playing the race game but when I ran my energy went out.”

I get it. After all I was in bed during the day because my energy went out a few years ago, and though it may flicker back on sometimes, it is never long before it is snuffed out again.

The vomiting is finally over now for my daughter and we know she will be all better soon. I do not know when or if I will get all better, but I remain hopeful. Slowly there is more awareness and more research happening, and maybe one day there will be answers and solutions to the ME/CFS riddle. But for now, we want to get up but we can’t.

The reason we can’t is elusive. There is not enough research and knowledge of ME/CFS yet for us to understand exactly why we can’t get up. But there is enough research and lived experience for us all to know it is not because we don’t want to, it is not because we are not trying hard enough, that we just need to exercise or it is all in our head. Many days we so desperately want to live our lives as we used to, but we cannot get up.

It is the baddest days, weeks, months and years ever we are living through. We keep going because of those moments when we think we are better and can do some little thing we love, like playing the race game outside — or maybe just sitting outside.