Find Your Tribe

Over the weekend I received a message from a wonderful woman who wanted to purchase a few of my books. I was happy she was interested and began to get her information. Then she said to me, she had just lost her best friend to suicide because she was in so much pain and no one believed she had fibromyalgia.

How can this still be happening? How? Yes, Fibromyalgia Syndrome is an invisible illness, but it is a chronic pain disease. It has officially been entered into the International Classification of Diseases Classification Manual (the ICD-10-CM) used by doctors worldwide. Fibromyalgia has been named the second most diagnosed rheumatoid disorder according to the BBC World News.  There is a blood test for a fibromyalgia diagnosis (the FM/a). MRI’s can detect the brain pattern of a fibromyalgia patient. There are commercials explaining Fibromyalgia on the TV! What else needs to be done?

“You don’t look like you are in chronic pain.”

 A woman I know told me this was said to her just last week! Her response was, “What does a person in chronic pain look like?” I believe her response was fair and just after being basically accused of lying about being in pain.

It is common for those of us with invisible illnesses to not be believed. We lose friends, family, employment, and our sense of self-worth. We isolate but in public, we shine. We work to put on an acceptable outfit, make sure we have some color on our cheeks and cover up the dark circles under our eyes. We smile through the pain. We walk down the street with grace even though every step makes us feel like crying. We make sure no one sees us fight back that pain. Why? Because we are used to not being believed.

I have been advocating for Fibromyalgia Awareness since November of 2016. That is when I started blogging, running a support group, and writing a book. I have had fibromyalgia since 1998, I was diagnosed officially in 2001. I had researched, read, questioned and learned every single thing I could before I made my stance as an advocate. I know I will never stop learning!

My biggest mistake? Believing others were learning about fibromyalgia while I was. The second mistake I have made? Believing that those around me wanted to learn about fibromyalgia. You must be careful and pick your tribe. Those who are not willing to accept your disease must be left behind as they will only hinder your progress and in severe cases lead you to your demise.

Find your tribe, your support system. Depend on those people, and they can depend on you.

We have much work yet to do. We must teach without expectation and continue to learn without assurances that those around us will follow us on our educational journey.

Always remember, you ARE enough!