As a veteran “Fibro”, I know how hard it can be to share with others what is is that I’m going through. It wasn’t until about two years ago that I started being vocal about my illness to my friends, family, and acquaintances. Sure, most of them knew I was tired a lot and took a ton of medications. Yes, they remembered each time I couldn’t go on a hike, a run, or camping. But not too many of them cared why, or bothered to know the name of my illness. I don’t blame them. It can be awkward being around someone with a chronic illness, especially when they “look fine.” They never knew what to say, and were uncomfortable in their own skins when I wasn’t feeling well.
This is about 5 miles into our 7 mile day, the three of them look so happy! I look bushed.
It took me about 14 years of living with this illness to realize that I was a huge part of why that was so. I was uncomfortable about it, always worried about being seen as a complainer, a whiner, or even worse… as weak. In my mind there was no middle ground between acknowledging that I have Fibromyalgia, and being a bellyacher who brings everyone down with her complaining. How could I expect others to be at ease, or even worse, to put me at ease, when this is how I dealt with this?
I needed to learn that I could choose how to deliver the information. I didn’t need to be depressing in my delivery, nor act fake when I wasn’t feeling well. Although there is balance in how I present myself, there is NO middle ground in having an incurable disease. You can’t pretend it doesn’t exist or try to act “normal”. You aren’t “normal”. I wasn’t, and will never be, normal. But why is that a bad thing? It’s not a good thing, but does it have to be a bad thing? It’s just life, my life.
I can’t tell you the exact moment that the light bulb went off in my head. I guess I just got tired, quite literally fatigued, from putting on a fake face of bravery. I still put on a brave face, but now it isn’t fake. I am brave, and I am ill. But I now know that those things don’t have to be contradictory. Being strong means being pro-active. To me it means sacrificing my comfort in order to bring about awareness for others. Last year’s Fibromyalgia Awareness Day was a great example. Having others share their support of me was embarrassing, but helped to show that Fibro is part of me, part of my family, part of all my relationships.
♥Mom, the O.G. Advocate ♥♥BFF, my Cheerleader ♥♥F-I-L, Empathizer-in-Chief!♥
Once I started posting on Facebook about the days I was having flare ups, I was surprisingly supported by my friends. People began to see how often those days were and therefore how much of my life it effects. In an effort to create that balance I so desperately want, I also make sure to post pictures of my happy, non-flare days. The days when I refused to let Fibro hold me down.
This was on my 30th Birthday, and here I was feeling so victorious over something I did with such ease as a 7-year-old. But I don’t care! I did it!
This is the balance I’ve begun to learn to strike. I say begun to learn because I’m working on it every day. I still tend to hold back the negative info when I’m around people face to face, but I’m working on it. I’m learning to be authentic and except being loved when doing so. I’m also learning that there are people who just aren’t going to give a damn, or will see me as a whiner no matter how much grace with which I try to deal. That’s OK too. People have a right to see this the way they want. All I can do is be genuine, be honest, and most importantly, be strong.