Over the years it is true to say that on the days I have felt my worst I am invariably greeted with the words by somebody or another “you look really well”.
I have always kind of smiled at this, even joked about how crap I feel yet people think I look amazing. However, this week it really got to me and set me thinking about the realities of living with what is effectively an invisible illness. I remember once a doctor saying to me that I would probably be better off having a leg missing at least then people would know I was suffering – I am of course not suggesting that we all go out to have legs amputated but I kind of see his point.
I am guessing that for many of us suffering with Fibromyalgia, we look pretty normal, nothing really to distinguish us from the next person. Standing at the train station this morning, I am sure nobody looked at me and thought “Poor girl, look at the pain she is in”. However, in reality my current flare up is so bad I could cry.
On a day to day basis I function.
I work, I socialise, I run a home and I exercise (albeit slowly and gently with yoga), hey maybe I am luckier than most but the reality is the effects Fibromyalgia are never far away. Sitting chatting yesterday, without thinking I tapped the biro onto my thigh and there it was, the familiar painful nudge reminding me of Fibros presence. On the outside looking in, nobody noticed and had I have yelped out or grimaced who would have believed that a tap from a pen could evoke such a painful response. At best, I may have been labelled a wimp, at worst a hypochondriac.
In the early days before my diagnosis, my doctor had given suggestion that I was maybe imagining it and would investigate this further. She concluded that I must have had some mental stress that could manifest as “imaginary pain”.
I knew that my pain and fatigue were very real but after being written off so many times, even I began to wonder.
I can imagine that for friends and family, it is as equally confusing when their husband, wife, mother, father, son or daughter are tired and lethargic all the time, they are in constant pain and yet there is nothing to show for it and they are tested by the doctors only for the tests to come back normal. What are they to think? It doesn’t take a genius to figure out the frustrations and conflicting emotions on both sides.
Due to the nature of our condition, we are often left feeling lonely and vulnerable. Unless we have a very sympathetic doctor, then we may feel that we have no place to turn, nobody who can fully understand how it feels to look fantastic and yet feel wretched. Nobody can understand, no matter how well intentioned or how much a person loves you, they will never grasp the reality of Fibromyalgia. That is why the Fibro community is so important.
So, the next time somebody tells you that you look great and so well, hold your head up and be proud.
Fibromyalgia is horrible and robs us of so much, but it can’t take our life or our will. We have to work hard to function as normally as we can and that takes strength and guts to get up every day and face the world in so much pain particularly knowing that nobody will probably even notice.