I asked my older brother to write what it was like to live with a loved one that has Fibromyalgia. These are his words.

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My sister has Fibromyalgia. And it sucks. Big time. Up until three years ago, I didn’t really grasp how much suck my sister was going through. I had only a shaky concept of what Fibro was. My ex’s mom dealt with it, and it was obviously a nuisance, but she seemed OK for the most part. It was only in the time I spent living back home that I truly realized what a hell my sister had been going through.

Mornings were the worst. Every day started with sobbing from behind my sister’s door. Eventually with great effort, she would make it out of bed. I would help her get across the hall to the bathroom one baby step at a time, so she could take a hot shower to loosen her locked up muscles. Then I would go to my room, close the door and cry. That wasn’t the worst thing though. Before this disease kicked in, my sister was rolling like never before. She worked hard to get a graphic design degree, started her own business and blossomed into an incredible writer. Now she can’t sit at the computer for more than ten minutes without crippling pain. There are so many awesome things in Chicago I wish she could join me for, but even something as simple as riding the bus downtown is not an option for her. One time we went to see a band she really liked, but she couldn’t rock out on the floor with everyone, instead, sitting off in the corner because standing for any length of time is excruciating. It broke my heart.

The awesome thing about my sister is she won’t let Fibromyalgia break her spirit. She still gets out of bed every day, still bends over backwards to help others, and is even starting a new business. More than once I have asked her to be a one woman art department for a film shoot and she always comes through. She rocks. But she still has to battle the Fibro every day.

As a loved one of someone going through this, it can feel frustrating because it seems like there is no way to help. There is no way to shoulder the burden or take on the pain for them. There isn’t even a Fibro 5K to run. So when my sister asked for participation in Fibromyalgia Awareness day on May 12, my first instinct is “What good will that do?” I don’t even own a purple shirt. But then I remembered my own battle dealing with narcolepsy, and what my best friend goes through fighting juvenile diabetes. On the surface, people can’t see the struggle you are going through. Sometimes your closest friends and family are the most dismissive. It can be a horrible isolating feeling. Does awareness help? It sure as hell does.

So on May 12, take a moment to acknowledge all the Fibro Flyers in the world who get out of bed every morning. That may not seem like a big deal to you, but trust me. It’s a big deal.

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May 12th is Fibromyalgia Awareness Day. If you or someone you know is a Fibro Flyer, please take the time to write your story. The more we talk about it, the more we learn about it and the more people we can help and support including the friends and family of Fibro sufferers. Maybe by doing this, we can get our purple butterfly friends soaring to new heights. ❤