Fibromyalgia’s Invisible Face

Originally posted on 8/14/2012. Thought I’d repost one of my favorite blog entries on this New Year’s Eve.

Purple butterflies are often used to represent fibromyalgia.

My boss and I happened to leave work at the same time yesterday, so we had the usual elevator chat, this time about our pets. Half of my brain was focused on conversing with her, and the other half was thinking how I couldn’t wait to go home and rest because my head was really pounding and I was achy all over. It struck me then that my boss must wonder why I have to stretch a lot at work and take walks when I need them. When you look at me, you don’t see anything wrong. It’s not like I have a broken arm or something visible like that. I’m usually in a good mood too. My rheumatologist has told me that research has shown that fibromyalgia sufferers have a degree of pain reduction and fewer flare ups when they are able to keep in a mostly happy, optomistic frame of mind. I really work hard to keep this outlook now as I’ve noticed it does help over the long haul. It is not an easy thing to do and there are many days that I fake my cheerful mood until I actually am cheerful. So not only do the people I pass every day at work or in town not see anything wrong with me, when you talk to me I don’t sound sick. I’m not coughing up a lung or losing my voice. I look and sound healthy.

I wish I was an artist and could draw the face that everyone sees and then draw the face of pain behind it. That ugly face with scars from battling chronic pain for years. The battle-worn and weary face of a career soldier battling fibromyalgia all day, every day. Those two faces would look so different as to startle the viewer, I think. But no one can see our pain-weary faces. They only see our healthy looking bodies, not the pain and emotional upheaval inside. Most of us hide the emotions we feel in response to living with chronic pain. It’s either hard for us to show that to people, or they don’t understand it anyway so what’s the point? We fight our pain every day, but it is an all but invisible to those around us. Those closest to us see our efforts but they cannot see our pain. They empathize as best they can but that pain we experience day in and day out is not visible on our bodies. It’s not a wound they can see and try to help us heal.

The face of fibromyalgia is an invisible face. No one can see it or feel it but us. I think the world would have a better appreciation of what we go through, the daily battle we wage, if they could see the true face of fibromyalgia. Instead, people see normal, healthy looking people who have problems doing their job for some invisible reason they say is chronic pain. No wonder some people just do not believe in fibromyalgia. They can’t see any evidence of it and seeing is believing. We struggle every day to do our jobs, take care of our families, take care of our homes, etc., all while combating our pain. It isn’t fair but it is our reality. So much of our existence is invisible to everyone around us. Maybe that’s why I hate the “How are you?” question so much. I can say I’m doing okay today or that it’s not one of my good days, but that doesn’t mean anything to anyone because they can’t see it with their own eyes.

What do you think the invisible face of fibromyalgia looks like?

Quote of the Day – Life Lesson

“The hardest thing to learn in life is which bridge to cross and which to burn.” –David Russell This is so true. My natural inclination is to never burn any bridge and to keep everyone liking me. Well, that takes way too much effort, I’ve learned, and you don’t get a good enough return on your investment of so much time and energy. Sometimes you just have to burn a bridge and get on with your life. It hurts but it’s a necessary pain I think. Or at least that’s what I’ve learned in life. And sometimes the bridge you need to cross is the harder path, the path less travelled as one of my favorite poems says. But the harder the path, the bigger the reward, or so I continue to hope.

Remembering Nelson Mandela

South Africa and the world lost a great man yesterday. As President Obama said, he doesn’t below to us anymore, he belongs to the ages. I grew up hearing of his struggle in the news. I read about him in textbooks. I studied him in my Political Science classes in college. I’ve followed his life and career for much of my adult life. In college, I especially enjoyed learning about him. We spent so much time in college studying the Founding Fathers and other US political giants, it was nice to read about someone who was alive in the present world political climate. Not only alive, but a pillar of humanity who had made so many amazing changes in his country and kept struggling every day to better the lives of his people. He was a modern-day hero, as NBC News termed it last night. I loved that he practiced what he preached. And his words always rang with such honest conviction. When he spoke, the world stopped to listen.

As a student of political science, I admired everything that Nelson Mandela accomplished, first as a protestor and revolutionary and then as president of his country. He was instrumental in ending apartheid. Now, as a woman who suffers from fibromyalgia, I admire his strength, courage, and his ability to never, ever give up. I suffer from chronic pain every single day. I battle my own body every single day. The pain knocks me down all the time and I have dig deep every time to get back up and continue my fight. But this man suffered so much more and yet he never, ever gave up. He kept fighting the good fight, even when we was locked up in prison for 27 years. He served as a worldwide inspiration even from a prison cell, and perhaps especially because of this. His accomplishments and inspirational words will be remembered for generations to come. He will be missed.