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Everyone's Battle With Chronic Illness Is Noteworthy, Famous or Not

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“I don’t need my name in lights, I’m famous in my Father’s eyes.”
– He Knows My Name by Francesca Battistelli

Francesca Battistelli’s latest worship song played quietly in the background on the lounge stereo, when my husband came home from work surprisingly joyful after what is always a long day at the office for him. He leaned over to where I had been residing on the sofa for the past two weeks to greet me with a kiss. Then he crouched down next to our daughter, Dee, who was playing merrily with her legos on the living room floor. As she flung her arms around his neck in one of her scrumptious embraces, he wrapped his arms around her tiny waist and kissed her cheek. He asked what she had done at school that day.

She replied with, “We learned about people who are different. Do you know Stephen Hawking?”

“Yes” we replied in unison.

“Do you know someone named Cox?“

“No,” we both said, looking puzzled.

Having racked our brains about who she was talking about, we finally gave up and I said “Who is that?”

“She’s an athlete” said Dee.

So I Googled it on my phone. I found out it’s Kedeena Cox, a world famous paralympic. We also talked about Tom Cruise who has dyslexia.

This was all very interesting you might think and so did I, but I felt this kind of weird feeling in my chest like an affront, a kind of indignation. I realized I was angry.

My husband and I looked at each other and he proceeded to explain to Dee, “These people are amazing, a bit like Mummy. She has CFS and she still manages to look after you and me, to make sure we have everything we need, get you to clubs on time and get you ready for school.”

My anger subsided thanks to the kind and unprompted acknowledgement from my husband, but it did leave me quietly questioning the wider issue.

Before I had myalgic encephalomyelitis I was a professional woman working in a corporate company, working my way up the career ladder. Then I got glandular fever. To cut a long story short, I didn’t recover. I was spending 16 hours a day in bed. It would take me three hours to get up and get dressed, I couldn’t cook meals, go shopping or socialize. Everything had changed. It has taken me 11 years to get to the stage now where I can function on a relatively “normal” level for six months of the year. The other six months I am in a flare up and predominantly housebound.

Why are children in school being taught that someone with an illness is amazing, only if they have overcome that illness and achieved great things? What about the rest of us? Those who are missing from our previous lives, to take on the theme of #MillionsMissing?

What about those of us who despite illness have not been celebrated on the world stage? Are we lesser people? Are we less significant? Am I less significant and less worthy of praise for my achievements because I haven’t won any medals or Oscar’s? Are my sacrifices, my choices not good enough? Am I less important or valued less because I had to choose my health, my family and especially my daughter as my priority over a career and failing health?

We are all fighting worthy battles in our private worlds and some of them are just as momentous as those that are being fought by the well-known and famous. Thankfully, as Francesca Battistelli says in her worship song, “I don’t need my name in lights, I’m famous in my Father’s eyes.” You are too.

I pray this gives each one of you comfort when you hear these stories that may dishearten you.

Getty image by fizkes

Originally published: February 27, 2020
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