Fibromyalgia Awareness Day 2015

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I know the many blog posts about chronic pain can start to get a bit much – especially around Fibromyalgia Awarness Day – but PLEASE DON’T GO ANYWHERE! Today, more than ever, we need you to read our stories and strengthen our voices. This day is about raising awareness and improving the understanding of Fibromyalgia and other invisible illnesses.

So, now that I’ve got you, how do I keep you?

Well, let’s start here. I am 30 years old. I own my tiny flat in London and I live with my boyfriend and two cats. One day I might get married, but it’s not very likely. One day I might have babies, but that is even less likely.

One day I might experience a day without any physical pain. That is even less likely than the kid thing.

I am 30 years old. Sometimes I feel 80, but most days I feel about 60.

You know that feeling you get after the gym, or a spinning class, or a long walk? I feel like that every day, even though I didn’t do anything.

Let me tell you some little anecdotes.

I get mocked more often than not when I get in the lift at work. Apparently a “young girl like me should take the stairs.” If only people would think before they speak.

Most people haven’t heard of Fibromyalgia. When I say the word, I get blank stares. More often than not I get comments like, “but isn’t it true most doctors don’t think it’s real?”

You see, Fibromyalgia sufferers have three types of pain: the physical pain we experience across our body, the mental/emotional pain of knowing we have lost the ability to live our lives like we used to, and the pain of having to explain/justify our diagnosis to those around us. That is a really hard pain to deal with.

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Once upon a time my occupational health advisor at work told me “Fibromyalgia is the in vogue condition of the noughties – in the nineties everyone claimed to have ME.” Shocking! And my consultant at the Pain Clinic once said, “many Fibromyalgia patients come here crying and in their pyjamas – you’re dressed and seem to be doing okay.” I will never understand why comments like these are acceptable, especially from professionals in the health sector who should have a far greater understanding of chronic pain and invisible illnesses.

Today I came home from work having commuted across London. I couldn’t get a seat on the train and so I stood for 45 minutes, and spent most of that time wondering if I could just plonk myself on the floor of the tube. How many people would stare? How many people would trample on me? What if I just asked for a seat…would that be okay? But how do I explain it? My body is in agony but I don’t look ill.

THAT is what I want you to take away from reading this blog today. My body is in agony but I don’t look ill. 

I am struggling to put the importance of this in to words. I am not at my most articulate, which is frustrating because this is probably the most important day of the year for a chronic pain blogger. So, let me pass the buck…

How can you raise awareness?

  1. Get on Twitter and share one thing you learnt about Fibromyalgia using the hashtag #ChronicLife.
  2. Link to my blog post – or others you find useful – using the hashtag #May12BlogBomb.
  3. Imagine every person you talk to has an invisible illness. It’s more common than you think.
  4. Spread the word, if only for today. Talk to people about it. It’s FI-BRO-MY-ALGIA.
  5. Follow the hashtag #FibromyalgiaAwarenessDay and get it trending on Twitter.

Thank you. x