Secrets of Fibromyalgia

Johanna Baynard
4 min readJul 12

Sometimes, I am standing at the sink. I may be brushing my teeth or washing up, but I am struck by the pain I feel. That pain makes it impossible for me to stand for more than a few minutes.

Beautiful woman looking down, she is contemplating illness.
Luis Machado by Unsplash

I have fibromyalgia and Central Pain Syndrome. The fact is that it amplifies any pain that I feel. My pain is worse than it should be. The doctors don’t know what, and researchers are having a hard time figuring out why this phenomena exists. Some researchers have found certain genetic strings that are common across patients with fibromyalgia. Doctors nor researchers have any answers that are agreed upon by everyone.

This lack of understanding of the etiology of fibromyalgia makes healthcare more difficult for fibromyalgia patients. We can’t say definitively what is causing our illnesses. We can’t point to research. We can’t even find a treatment that works.

There is no getting “over” fibromyalgia. It’s permanent, there is no cure. There is nothing visible about fibromyalgia. No matter how sick you are, there is no way that another person can see your illness.

The Betrayal

They might see your slumped shoulders, the pain is in your eyes, yet they cannot see any discernible reason for your hurt.

You know what that means. You will see doubt in others’ eyes. Is she really sick? Is she trying to stay in bed? Is she faking her disability? Friends may sit down with you and talk about their own injuries and say things like “this is a real disability”. You may suffer these conversations quietly and even with grace. It won’t matter at all. You will suffer through a lot of criticism.

The cost of the illness is high, it’s physical and emotional. While you never heal physically, you won’t get a chance to heal emotionally either. Not in the way you’d like.

Accepting Disability

You’ll have to figure out how to change your life, it’s small at first, then it changes to the bigger things. Your doctor’s appointments will become more frequent. Your bloodwork will become often, and you had better have great insurance.

Johanna Baynard

Dedicated activist for economic equality. Baby Boomer. Wife, mother and blogger: Life According to Johanna, and