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What Does a Chronically Ill Person Look Like?

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I’m never seen in public without, at the very least, lipstick and eyeliner. I pride myself in appearance and I’m always smiling! That’s what most people see when they look at me. I also like a glass of wine or three and love to get up and dance.

It never used to matter that in private I struggle to get out of bed in the morning, that I survive most days on a cocktail of painkillers or that after a good night out I can take two days to recover. I had been able to sustain this dual life quite successfully until earlier this year when the bad days began to outweigh the good and the pain started to creep up to a point where it was evident by my strained smile and furrowed brow.

This flare has lasted for months and has impacted on my whole life. We’re selling the coffee shop I run as between the increased pain and fatigue, it’s becoming impossible to manage. Developing fibromyalgia has been life changing. I don’t know where exactly I am on the scale of grief. I alternate between anger, despair and denial at the moment – but I’m slowly coming to realize that I have to accept the limitations my body has now set. This doesn’t mean giving in, but I feel that in order to achieve a fulfilling life, carry on smiling and keep having adventures, I will need to come to peace with having a chronic illness. I’m learning to pace myself, be honest with friends, family and especially myself when I feel unable to go out or do a certain activity.

Dressing well and wearing makeup has never been more important to me, it’s my defense, my way of stating that despite struggling with fibromyalgia, I’m still the same person and I’m fighting it! Ironically the image I portray hides the illness so well that I can get judged by people who don’t know me when I exercise self-care.

Only this morning I was in a queue at Waterloo Station waiting to use the disabled toilet rather than descend two flights of stairs carrying a suitcase. An elderly gentlemen with a stick attempted to barge past me and said with rather an accusing voice that he thought the accessible toilet was only for disabled or old people like himself. I’m quite proud of the response I gave. I simply politely informed him that although he may not think it by looking at me, I did in fact have a disability. He grunted and I don’t think he believed me, but I carried on anyway and he waited his turn.

I don’t have to be a stereotype of what and who people think someone with a chronic illness should be. I’m me, what I experience and how I cope with it is unique to me. By the very nature of fibromyalgia I will have bad days, horrendous days, but also days when I feel OK or even great – and I’ll make the most of all of them!

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Originally published: December 5, 2017
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