As part of my “day job” I’ve been working with fatigue network members on creating an information pack to support them, their colleagues and their managers understand chronic fatigue and how to support them work whilst managing their condition.
One of the members volunteered to create an infographic covering some of the things not to say to someone with fatigue and this is what he produced - it’s fab!
Jonathan blogs about his experiences with CFS/ME over at https://meandmeweb.wordpress.com/ if you fancy checking out more of his writing. He also writes poetry and creates memes to share and raise awareness. You'll also find him on Twitter here - I'm a big fan of the CFS/ME twitter community because they really helped me get through my worst times.
I can honestly say I’ve had all of these at some point or other which is really disheartening, but so comforting to know I’m not the only one to face these issues!
I know most of the time people do mean well and what they’re saying comes from a place of genuinely wanting to help. And in all honesty I didn’t fully understand fatigue until it happened to me, so chances are I’ve said something wrong at some point in the past too, and for that I apologise profusely!
But then there’s also the people who don’t come at this conversation from a place of support. The ones who judge us or think they know better. The ones who have the ability to make us feel small, like we're an inconvenience or a problem that needs addressing. Sometimes I let things slide, because the energy it would take to address the problem is just too much at the time. Or in the grand scheme of things what that individual thinks doesn't really matter. But other times those people get the full force of my wrath! I mean, who are they to judge me?! What makes them the knower of all the things?!
One of the most frustrating was when a fellow fatigue fighter at work told me I was looking really well and must be getting better. It was the whole #butyoudontlooksick from someone who should know better!?! I mean, come on! You know I have a chronic health condition, I’m not going to suddenly be healthy again! Maybe one day I'll be able to say I'm totally recovered, but not a week after a crash! That's make up and being sat away from lights so you can't see the dark circles!
There was a bigger incident back in October at work though - one that really affected me. I went to a whole department meeting where there were lots of people who didn’t know anything about me. There were a number of exercises that I couldn’t participate in because mobility that day was not my friend - so running round a meeting room wasn’t going to be an option. Most people were fine with it, they asked why I wasn’t joining in and I explained (albeit briefly!), but there were two people who weren’t. Who laughed at me and called me antisocial and said it was ridiculous. WTAF?!
I was shocked. Stunned. And not in the place mentally or emotionally that day to do or say anything about it. It took a lot of energy just to hold back the tears. How could anyone think speaking to someone like that would be ok? And it was two different people, not just one person who knew no better!
I’ve talked to a few people about it at work. I decided against naming and shaming the people involved because that won’t solve anything. There’s a bigger issue at play - the fact that there are still people in our organisation who aren’t getting the message about respect at work and diversity issues. They think that’s a load of pink and fluffy useless stuff. I’m working with our diversity programme manager now to come up with some new ways to get the message across and help the organisation understand invisible illnesses better. To not judge people for what they can or can’t do. Or make assumptions about someone’s ability. It was only when I was telling her about what had happened that I finally got upset. I didn’t even think I was still upset or angry about it by then, but I guess I still am.
But rather than wallow in that I’m channelling those feelings into something good - something that helps people so that others don’t end up in the same position as I found myself in. And if I have to work with those two people in the future, I’ll challenge them myself!
And maybe by sharing things like this infographic Jonathan created we can slowly start to spread some understanding, and give people the chance to do the right thing. And if they choose to continue to judge once they know more, well that says far more about them than it does me!
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