International Fibromyalgia Awareness Day

Today is International Fibromyalgia Awareness Day. If it wasn’t for other fibromyalgia sufferers and the internet, I probably wouldn’t have known anything about this. To be fair, I haven’t been watching much TV or reading much news, though I’m not sure if anything was even featured in the media. But I think this sums up the lack of awareness for fibromyalgia. We have an awareness day but how many people even realise this? And how many people truly know what fibromyalgia is and what it is like to live with it? My experience is that a lot of people haven’t heard of it, some people kind of know what it is and others are completely dismissive of it. When I say dismissive, I don’t necessarily mean that people don’t believe it exists (though there are those people out there) but rather that they don’t really see it as much of a big deal. In a way we have made a rod for our own backs. We are unbelievably brave in a lot of respects. We generally push on and get on with our lives (therefore appearing “normal”) and feel this need to protect ourselves and those around us by lying about how we are feeling. How often have you caught yourself answering “how are you?” with “fine thank you” when really you are feeling like hell? Having said that, even when we are honest about how we are feeling we often don’t get taken seriously, which justifies and explains the lying in the first place. There is also an element of worry and fear involved. We don’t want other people to change their views of us and see that we are struggling.

But fibromyalia is a struggle. It is hellish to live with day-in and day-out. That’s the honest truth. It is a constant daily physical and mental battle. And that is not exaggerating!!! I don’t want anyone to feel sorry for me but at the same time I wouldn’t wish this on anyone. I would love for an overall better understanding of this illness. Essentially hiding how we actually feel each day is exhausting in itself. Sometimes I wish it wasn’t an invisible illness because it would make life a lot easier in many ways. The invisible part of fibromyalgia is what makes it such an isolating illness. Only you know what it feels like and because there are no obvious physical symptoms it can be hard to get this across to people and have them truly understand. Many will try to understand and a lot of people are very supportive but then there can still be the odd flippant remark or comment (which can be so insignificant to them but hurtful to us) that brings home the truth- only those who have fibromyalgia really understand what it’s like. That can be hard to cope with at times.

What we need to remember is that we are incredibly strong people. Not everyone would be able to cope with what we have to deal with on a daily basis. The fact that we try to get on with life as much as possible and stay as positive as possible in itself is a huge achievement. Don’t get me wrong, there are plenty of days where I would rather just curl up in a ball and go to sleep rather than face the day and some days when I have to do just that. But I’m still here. I’m still fighting and trying to do the best that I can with the cards that I have been dealt. That’s a feat in itself and if this is you too, give yourself some credit for that. You are amazing. It’s as simple as that. And though it might seem unfair that you have this illness, just remember that it does not define you. It does not make you who you are. You are still the same person as you were before you became ill. You might have had to adjust and adapt your life in many ways but that does not make you a different person. It just makes you a sensible one. Don’t let yourself become bitter. Don’t wish for a different life. Realise just how awesome you are as is and celebrate that.

Happy International Fibromyalgia Awareness Day! Here’s hoping that the future brings about more understanding and better treatment options for fibromyalgia.