What’s worse than having fibromyalgia?

I started a new job last week, and it’s fair to say that pre-work nerves are that little bit worse when you have a chronic health condition. How will you explain it to your boss, without sounding incompetent? How will you commit to doing your job well, without taking on too much and over-compensating? Striking that balance is so important, and that’s the bit I was feeling nervous about.

feel alive

So on my first day, I made myself a promise. Be totally completely 100% honest – even if I end up sounding a bit crazy. “Oh, I have this pain thing, it means sometimes I can’t walk but sometimes I’m fine…” It’s the first time I’ve been really honest with my boss on the first day of a new job, and it felt really good.

That is, until I hit Google.

I got home and thought, if someone I managed told me they had a condition I’d never heard of, the first thing I’d do is some research. And thankfully, there are some amazingly good blogs, medical associations and NHS websites dedicated to providing accurate information on lesser-known illnesses. Unfortunately, there are also things like this:

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And this:

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And at this point, I am mainly wondering who on earth is spending their time creating memes to slay fibromyalgia sufferers. (But seriously, if you are going to spend your time doing that, at least make them witty. Please.)

It was around this time that I thought, what’s worse than having fibromyalgia? It’s feeling embarrassed at having fibromyalgia. It’s wanting someone to respect you and value you professionally, knowing that they may have seen things like this and therefore not believe you. If you have never met me, if you don’t know how hard I push myself, then how can I convince you in five minutes that I am genuine? How do I tell you this is real when half the medical community don’t believe it? And how did we get to a position in 2016 where people with no medical knowledge at all have heard about fibromyalgia, only because it’s the made up condition that they can make fun of? I can’t think of a single other health problem where this is accepted.

Still, hopefully, medical research will soon show the pathology behind this condition and we will be able to explain our health. In the mean time ,the fibromyalgia community will continue to build the integrity and understanding that is so desperately needed.

Happy Friday folks, keep on fighting. x

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