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About illness

The importance of understanding

It’s very very important, when you’re going through something significant, whether it be illness or otherwise, that you have at least one person in your life who understands. Not just sympathises – but really, truly knows.

I’ve been lucky in that, since I got sick, I’ve been able to find a whole bunch of other people who experience very similar conditions. My friends and family are also hugely supportive. So I have a really great network around me.

But, to be honest, I didn’t realise what I was missing until I met Jem. All of the people I know with similar illnesses to mine are online. And while that’s incredibly valuable, sometimes you actually need to be with someone.

When I went to Wellington, I stayed with my friend Alex. I knew I’d be meeting his flatmate, Jem. We had spoken via Twitter about chronic illness so I was really interested to hear her experiences.

And, oh man. It was extremely emotional. To finally hear someone voice the exact same challenges I have every day. To talk about how difficult it can be just to get out of bed, to hang the washing out, to send an email.

Jem was the first person to introduce me to Spoon Theory. This is a way of describing the levels of energy you might have on any given day. Some days, I might wake up with two spoons, and just getting out of bed and having a shower uses up one of them. Some days, I don’t wake up with any. This is such a useful language for describing to people what my daily experience is. I kind of get a bit angry when people say “Oh, I worked a 12 hour day, I understand, I’m so tired!” Or “I had chronic pain – my arm hurt for two weeks!” (Actual thing someone said to me). It’s a bit like, yeah, um no?? I appreciate that you’re trying to sympathise, but the thing is, you don’t get it. Even writing this blog is draining me. My days at the moment are like walking through mud to try and do anything. I’m weighed down by my own body. I can barely keep my eyes open. I get scared because I’m afraid I won’t have the energy left to breathe. I move like a slow loris, reaching out and clutching furniture, then inching myself along. After writing this, I will have to rest for a least two hours. And that will have used up all my spoons for today – before I’ve even managed to have a shower, or do the dishes, or make myself food.

Jem is also an extremely talented artist, who was able to capture some of the feelings of chronic fatigue. When she showed me these pictures, I cried. The accuracy is terrifying.

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About being imprisoned by the pain and fatigue.

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About watching your energy bleed out you, while you’re powerless to do anything.

The second one in particular is just incredible. I have so many days where I feel like my head is literally lower than my body, and my heart is bleeding out, and I’m in the dark.

Thank you, Jem, for expressing the experience like this. And thank you for being my someone who understands. It means so much, to know that someone else totally gets it.

Oh, and also – happy birthday. x

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About writehandedgirl

Sarah is a writer who is passionate about social justice, feminism, politics, and cats. She is a columnist and poet and currently lives in Nelson. You can follow Sarah on Twitter (@_writehanded_) or read more of her writing at writehanded.org

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