What Does a Chronically Ill Person Look Like?

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!

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Fibromyalgia

An upset woman at a wooden table, with a man holding her hand.

When Chronic Illness Is a Deal Breaker in Relationships

“If you’re still sick by New Years, I think I have to consider breaking up with you.” I was sitting across from my boyfriend in a coffee shop and all I could do was look at him with a blank stare. There have been many moments in my life where I have felt completely out [...]
fibromyalgia and me comic of woman getting more tired throughout the week

'Fibromyalgia and Us' Comic Explains What Life Is Like for Patients and Their Families

One of the most frustrating aspects of fibromyalgia is how little it is understood by others — and how difficult it can be for patients to describe the challenges they’re dealing with. To help more people understand, the University of Dundee in Scotland is trying a new approach: creating a comic to tell the “story” of fibromyalgia. [...]

Drawing My Fibromyalgia

Sometime ago I came across Toby Allen’s artwork, where they had depicted various mental illnesses as monsters, including anxiety, post traumatic stress disorder and depression. I found the designs striking, unique and reflective of the illnesses they were portraying. Their intent for the character designs was to raise awareness and education about mental health and [...]

Why a Doctor Needs to Earn My Trust Before They Write Me a Prescription

I had a friend tell me that she used to trust anyone who could write a prescription. So did I. Trust. That is a big word. Those five little letters in a row can be life-altering. Do you trust me? Do I trust you? Trust is a knife wrapped in a bow. A gift that can cut [...]