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I Am Not Alone With Myalgic Encephalomyelitis, but It Is Still Lonely

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There are many ways that chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has affected my life. I often find myself grieving for the life I used to have. I miss hiking and kayaking and basketball and diving under the waves at the beach. But, the thing I grieve most for is my social life. My whole life I have surrounded myself with people; always had an open door policy and always room at the table. I am (or was) your typical extrovert, always loving company. Unfortunately, that has had to change. I only have enough energy to socialize in small doses and cooking a simple meal is something I can’t always manage.

I have had to become OK with my own company in a dark room for hours, days, sometimes weeks at a time. I must admit that I don’t feel like very good company. There are no jokes or stories or activities. I am far from the life of the party. I am not energetic, enthusiastic or animated. I am not the company I used to be.

There is one thing that I am. I am not just mostly alone in this darkened room, but I am lonely. And, I know as I write this that I am one of the lucky ones. I get visitors. I have a husband, two daughters, and parents who visit. They pop into my room to care for me and bring me food and medicine on my bad days. They bring news of the outside world and tell me it’s going to be ok.

Last week my daughter ran into my room and caught me having a cry because sometimes that’s what I do when I’m alone.

“Mum, why are you sad?”

“Because I’m not feeling very well and it makes me sad that I can’t play with you.”

“Oh. Do you want to hold my hand Mum? Don’t worry, you can play with me a different day OK?”

And it was OK. She was right to an extent. There would be a better day in the future, and we would play then. But, the sweetest thing was that she was with me right then, that I wasn’t alone. I took up the offer to hold her little, sticky, 3-year-old hand and genuinely loved that she stayed and lay next to me for a few minutes. (A huge sacrifice for a usually busy ball of energy.) In those few minutes, we were alone together.

My 3-year-old is good at that, being alone with other people. She, like her Mum, loves people. I see it many days when my 6-year-old comes home from school and walks to her room explaining that she wants some space and time on her own. Her little sister follows her down the hall saying “Yeah, c’mon let’s be on our own together. Mum! We’re going to be on our own now OK?” Her sister is quick to tell her this is not OK and usually an argument ensues, and a crying 3-year-old comes running to me after being kicked out of her sister’s room. She just loves people so much that she can’t leave them alone.

Unfortunately, my lonely feeling remains no matter how many people I surround myself with because the reality is that I am alone in this CFS/ME cloud. This thing is unpredictable, painful and so hard to comprehend. No matter how much I try to explain what having CFS/ME is like, they will never fully understand it. They will never know the feeling of concrete limbs and dragging their pain-filled body through another day where thinking is like soup and their willpower not enough to keep them from resting in bed. I am grateful they do not fully understand CFS/ME, because to understand is to have it. So, I continue to feel lonely but, thank God, that I am not always alone. My people have stuck by me, and we are on this not so great journey together. If only there were less advice and judgment and more people willing to follow us down hallways, hold our hand and be alone together with us.


Getty image by Banjavisa

Originally published: September 17, 2018
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