DiversifYA: Sophie Cleverly
|October 7, 2014||Posted by DiversifYA under Disability and Illness, DiversifYA|
Sophie Cleverly is an utterly lovely writer — who I just happened to meet this weekend, yay! — with an MA in Writing For Young People. Sophie, aka hapfairy on Twitter, enjoys blogging, symphonic metal and everything fantasy. She’s currently working on her mystery series about twins, SCARLET & IVY, which debuts in 2015 and sounds both creepy and AMAZING.
1. How do you identify yourself?
I am a chronic illness sufferer – and I have quite the collection. The one that has the biggest effect on me is my Crohn’s Disease (a condition where your immune system attacks your digestive system), but I also have Polycystic Kidney Disease, Hypermobility Syndrome and have been diagnosed with chronic fatigue and chronic pain in the past. I am officially classed as disabled, but I sometimes wonder if “varyingly abled” would be a better description. I also answer to “spoonie”!
2. What did it feel like growing up with a chronic illness?
It was certainly difficult. I often struggled to participate in the same activities as my friends, especially sports and parties. I was sometimes picked on, asked things like “are you anorexic?” or “why are you so pale?”. All of this was made worse by the fact that I didn’t know what was wrong with me – tests I had often only showed inflammation, and doctors were dismissive of my symptoms, even very serious ones, perhaps because of my age. It was a constant worry that no-one understood my illness and they all just believed I was faking it.
I didn’t really see myself reflected in any media… in fact, I struggle even now to think of any books that have characters with my illnesses or anything similar (send recommendations, please!). I thought that my problems were strange and embarrassing and never really realised that other people suffered with them as well. I actually really enjoyed school and learning, but it was a constant struggle with pain and tiredness.
I was finally correctly diagnosed when I was about 20 after an MRI scan showed that I had a stricture (narrowing) in my small intestine – but by then my body was very damaged from years of not having the right treatment.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
The absolute worse things have been when I’ve had to be hospitalised for extreme pain, or when I had an operation last year to remove part of my small intestine, from which the recovery was brutal. But the biggest daily challenges are things like motivating myself, managing tiredness and pain, taking medications with different requirements, dealing with other people’s perceptions… These are the smaller things that people perhaps might not know about, but have the biggest impact on my day-to-day life. Oh, and another big one: finding somewhere to sit down! Nowhere has enough chairs these days!
Unfortunately, there really aren’t any perks to being ill – I think many of us would gladly trade supposed perks like “being thin” or “getting to stay in bed all day” for having a healthy body and not having to be in agony. But some good things have come out of it: some of my best friends are fellow spoonies that I got to know through mutual illness discussion, and it led me to pursue my dream career in writing since I knew that was something I’d be able to do. Though my wrist joints have not thanked me…
4. What do you wish people knew about chronic illnesses?
I wish people would be more understanding and consider that an illness that is not visible or well-known is no less of an illness!
The variability is something else that people often don’t consider. A person with a chronic illness might have days where they are in incredible pain and unable to move, they might have days where they can live their life easily with relatively few problems, they might have a lot of days in between where they’re not too bad but are still suffering with something (aches and pains, stomach problems, medicine side effects, viruses caught from having a reduced immune system…)
I think there’s a tendency for people to think you either can do something or you can’t. With chronic illness it’s never simple. You might be able to technically do something (e.g. walking around the shops), but you don’t know if it might result in joint pain or needing to sleep for the rest of the day. And what about having to bring someone with you in case you become suddenly unwell? There’s more to consider besides just good days and bad days.
5. What are the biggest cliches/stereotypes you’ve seen?
There are worrying stereotypes that anyone with an invisible illness is just making it up, imagining things, doing it for attention – I have never known this to be true, and any time this is spread around it just makes life a lot more difficult for everyone. Then there’s the idea that being ill is somehow glamorous and edgy… also not good. Or “the one where the disabled person is magically cured by cheering up a bit” – just no!
BONUS: What is your advice for writers writing diverse characters?
Research and talking to people will help you the most. Try not to use stereotypes – this is more easily avoided by not just having one character of that background. And finally, don’t be afraid. Everyone makes mistakes, and sometimes it can be impossible to know what might be annoying/hurtful to people until it’s already there on paper. You might not get everything right, you might not be able to include everything in one story. They key is just to take any feedback you get on board and make appropriate changes for the next time round. And remember – we need as many diverse characters as we can get!