I recently shared this post on my Facebook page which shows side-by-side photos of me. In one photo, I’m feeling really rubbish. In the other photo I’m feeling really rubbish, but have makeup and clothes on rather than pajamas. I’m smiling, so you can’t tell that I feel really rubbish.
Showing the two faces of my fibro was an attempt to illustrate the fact that everyone in my life sees me when they assume I’m feeling OK. But underneath that, when I’m not trying to put on a brave face, it’s a whole different story.
As many other of you with chronic illness know, “brave face” can become our default setting because we don’t want anyone to know how we truly feel. I think for me, this is partly because I don’t want to be seen as a complainer or hypochondriac (thank you to some insensitive medical professionals for that particular insecurity). It’s also partly because I don’t want to make anyone feel uncomfortable or upset, and lastly because I don’t want sympathy.
Of course we all want understanding; whether we’re chronically ill or not. But I don’t want anyone to feel sorry for me, because I am lucky in so many ways and have a mostly very happy life. I am extremely fortunate to have great, supportive family and friends…but I know it’s not that way for all of my fibro brothers and sisters out there.
I feel like my “brave face” is probably at least — in part — due to pride as well. I mean, we stop being able to do the stuff that makes us fun, like going out for drinks or to play bowling or go to the gym. As if that wasn’t enough, many of us also lose the ability to work and pay our own way; that comes with feelings of being a burden. I know for me at least, it feels like I’m not a productive member of society any longer.
I have realized by shielding those around me from most of the realities of my condition, I’m not helping them and I’m not helping myself. How can I expect understanding if I’m only telling a fraction of the whole story? How can my loved ones show that they do, in fact understand, if they aren’t given a genuine opportunity to do so?
It won’t always be easy to do, and I may not get the reactions I hope for every time, but I’m going to try harder to open up a little more about my fibromyalgia experience. Since being a member of The Mighty community, I do feel like I’ve begun to do that…but I still have a long way to go. So don’t judge me after this if you hear me tell someone who asks how I am that, “I’m fine.” After all, that little phrase is more ingrained in me than I probably know and will take me a bit to overcome. But know that I am trying. And I feel really rubbish today.