My Story: For Fibromyalgia Sufferers, ‘You Don’t Look Sick’ Is a Common Refrain

Takepart.comOctober 1, 2012

“But you don’t look sick” was a phrase from a popular chronic illness support site staring back at me on my computer screen after being newly diagnosed with fibromyalgia. All I could do was laugh at the irony of that statement.

When I was 13, my father told me I was being overly dramatic about my symptoms. He said there was no possible way that my knee could still hurt months after it healed from a sprain.

My mother told me that everyone has aches and pains after I heard three vertebra pop in dance class at 19 and I found it hard to breathe. After some severely blinding headaches at 20, I was told by my doctor that everything was all in my head.

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Pain is something so common today and it makes healthy people think that it shouldn’t stop a person from being a go-getter at work, a mom, a wife, a daughter, or granddaughter. It’s just a pain that Advil can cure, right? So why let it stop you?

It's a comically sad and vicious cycle that every fibro sufferer goes through. We look fine on the outside, a perfect specimen of health, but deep inside our young body has a disease that is robbing us of our youth.

We try to ignore the pain at first. Some of us are even good at blocking it out. Others will pop a couple of painkillers to numb themselves as best they can to go on.

Why? Well, despite everything we endure, we don't quit. We keep going no matter what—even when the pain is so unbearable that it feels like someone has taken a knife and stabbed us in the back.

We go on because we don't want this disease to beat us. We go on because we don't want people who are completely misinformed and ignorant of our daily struggles to make us feel weak. We go on for our kids, our significant others, our sickly mothers, fathers, grandparents, and in-laws, our co-workers and employees, and our passions in life.

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We go on because we don't want to feel as beat up in life as we feel bodily. It becomes so frustrating when you hear the phrase, “But you don't look sick,” because it deflates everything we are trying to build back into our lives that was taken from us the minute we found out we had a disease—a disease which some believe has been documented since the Bible and is so misunderstood that it is still sometimes labeled a syndrome.

Fibromyalgia is an actual disease that manifests itself in chronic pain as well as other issues such as sleep and memory problems. There is now proof via MRIs that our pain is not all in our heads. Thank goodness! Fibromyalgia is a painful and exhausting disease. However, you can still lead an abundant life even with a diagnosis.

You can have a fulfilling career just like many other people who have this illness, raise children and care for aging grandparents and parents. You can do whatever your heart desires. The options are limitless.

The only thing that will change is your limit with time. You may need more of it to complete certain tasks. I know it takes me longer to mop the kitchen floor now than it did years ago. The best suggestion is to plan ahead. Think of yourself. Learn to say no. Be patient with people who don't get what you are going through. And find people who do! They are your support system in life and they will help through the good times and the bad. Above all, stay fabulous!

Do you deal with fibromyalgia or chronic pain? Let us know in the comments.

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Author Kimberley Linstruth-Beckom writes about fibromyalgia for her blog Fibro and Fabulous. Under the name Amanda Kimberley she writes fiction and poetry.