Enjoying Ill Health: or, Medical Gaslighting and What Happens Next

As I sit here and type this, my right hand is significantly colder than my left, and it’s worrying me. I know that the likeliest reason is because I use the mouse with my right hand, and so it’s elevated more often than my left. But I also know that there are, potentially, other reasons. Like a blockage somewhere that’s affecting my circulation, maybe. It’s unlikely, but it’s possible.

This is the kind of thought that makes people roll their eyes. That, if they know me well, people will put down to my ongoing issues with anxiety. And, believe me, I know that anxiety is a big part of it. When I have symptoms I don’t understand, they make me anxious, and I look up what they might be, and, sometimes, I end up kind of hoping that I actually have the thing because then at least there’d be a reason.

That last part is something a lot of people really don’t get – and really get offended by when you try to explain. I titled this blog after a catty comment in the very last Poirot book, Curtain, where someone says of the murder victim (before she dies) that “she certainly enjoys ill health”. I don’t identify with the character – she’s pretty dreadful – but I use the quote because I’ve had it levelled at me. The thing is, there’s a big difference between hoping for a diagnosis, even a bad one, and wanting to be ill.

I’ve written before about my frustrating history with gynaecological problems, and in particular my ten-year wait to get a diagnosis for the endometriosis and PCOS that was shredding my insides every month. It wasn’t until a few years after finally receiving this diagnosis that I heard the term medical gaslighting, which struck such a chord with me. Being told for years that your pain is normal, being made to feel weak and silly for even saying that you feel it, has an impact. After a decade of that, getting the answer that, yes, you were right, things are wrong, and we’re going to try to fix them, is more of a relief than you can imagine – unless, of course, you’ve been there too.

This experience taught me an important life lesson – that my body can go wrong, that people won’t necessarily believe me when I tell them about it, and that their lack of belief doesn’t mean that everything is actually okay and that I’m imagining things. This is especially true when the symptoms that are apparently ‘okay’ don’t add up to wellness. I’ve been reassured I’m not anaemic, even though I get dizzy, breathless and low on energy every time I have my period. I’ve been told that there’s nothing bad going on in my uterus now that I’ve had my endo lasered, even though I have to be careful how I turn over in bed, otherwise I end up curled in a ball while pain stabs through me. I’ve had it implied that everything would be fine if I just lost a bit of weight (seriously, the overlap between Diagnosis Fat and medical gaslighting is real garden of delights).

After decades of this, it’s hardly surprising that I freak out about every little symptom, and that I’m reluctant to accept an answer of ‘it’s nothing to worry about’. When I was younger, my heavy and irregular periods were ‘nothing to worry about’. The pain that left me unable to stand up straight was ‘nothing to worry about’, either. It was all a natural part of puberty, until eventually, after I’d nagged and pushed my way into some proper testing, the people in charge of dishing out treatment agreed that it wasn’t.

The thought at the back of my mind is always ‘what if that happens again?’ That innocuous-seeming symptom could be nothing – or it could be something serious that I should be getting treatment for, treatment that would drastically improve my life if I get it soon enough.

And despite this worry, I’m still experiencing the flipside of the medical gaslighting coin – the one that encourages me to ignore pain or other feelings of illness because ‘it’s probably nothing, it must be normal’, even though I’ve had first-hand experience of a time when it wasn’t. Recently, when I turned over in bed wrong and had to curl up whimpering for a few moments because of the stabbing feeling in my lower abdomen, my partner, very concerned, asked me how long it had been going on.

“Oh, God, years,” I told him, as I unwound myself and sat up. “It’s just one of those things.”

Living with this constant battle between ‘you need to see a doctor about this’ and ‘this isn’t worth seeing a doctor about’ is exhausting, and I can’t imagine it does much for one’s general health. I can only see one way to combat it – and that’s for people, especially medical professionals,* to start off from a position of believing someone when they say that something’s wrong, and to only revise that position if they have hard evidence that the person is faking or exaggerating. (Hey, that’s a pretty good approach to take whenever someone’s telling you something that has to do with their body and things that are happening or have happened to it!)

Medical gaslighting has an impact long after it’s over and you’ve finally got the treatment you needed. Listening and believing when people tell you something’s wrong – even if it’s a silly-sounding complaint about a slightly colder hand – goes a long way towards lessening that impact.

 

*Yes, yes, I know, not all medical professionals. I’ve had some brilliant doctors and nurses in my time, and I love, value, and fiercely defend the NHS. I’ve also had doctors who ignored what I told them, lost my notes, thought I was a different patient, refused me treatment that I was begging for because “You might want to have a baby one day”, and, in one case, outright told me to “just have a baby and that should sort it all out”. Medical professionals are people, and some people are prejudiced, incompetent twits.

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Work in Progress: Writing Sigyn, Post Nine – The Nth Draft

Writing is the most frustrating thing.

I’ve been writing this story for years now. I know it inside out. I’ve finally, with help from editors and writing friends, got a plot that hangs together.

None of that has made the actual writing any easier. The long process of putting one word after another and hoping it makes sense – I’d hoped that would fall into place now I know where I’m going. But writing is frustrating, and today, every word I’ve written has felt more boring and clunky than the last.

It’s so difficult to remember that this is normal. That every single writer goes through this. That I have to write the bad words so I can revise them into good ones.

Still, the words are down on the page now. That’s better than no words at all. Now they’re there, I can keep chipping away at them, shifting them around, and hopefully, eventually, they’ll work.

Writing is the most frustrating thing, but I have to remember that it’s worth it in the end.

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Planning vs. Pantsing

When it came to writing stories, I was always a pantser. I didn’t know the term at the time – I learned it years later, on NaNoWriMo, when I was setting up my page and awarding myself as many badges as I could get without technically cheating. (I love badges. It’s one of the things I miss most from being in Guides).

“Pantsing” is, apparently, writing without a plan – by the seat of your pants, as the saying goes. Pantsers write their stories by sitting down, getting started, and seeing where it takes them. It’s an approach that works for a lot of people. It’s taken me nearly twenty years to realise that it doesn’t work for me.

I’ve technically written four novels in my life. The first, Indian Horses, was my passion project when I was a child – an epic set in the Old West with talking horses and a Native American hero, written when I didn’t realise what an enormous racist mess the entire story was. This gave way to The Shadows, the fantasy novel I’ve been writing since I was fourteen, and a story I still believe in but have realised that I’m not ready to write yet. Then there was Spider Circus, a prequel to The Shadows, which I self-published and was pretty happy with, although I know I could do it better now. Finally, there’s Sigyn – still a work in progress, but I’ve written a novel-length draft, and dammit, that counts.

(Incidentally, a note to writers – if you have a slight lisp that comes out when you’re tired or stressed, maybe don’t give all your stories titles that begin with S. Trust me on this).

I wrote endless notes around those stories – about the worlds, the characters, the way the magic worked. But I didn’t plan the stories themselves, because I firmly believed that if I did, the story would die. Breaking it down and listing each event would kill it. I wanted to keep my story alive.

I guess it worked. My stories did stay alive. In fact, they rumbled on in perpetual loops of regeneration – every time I finished, I needed to start again, because it wasn’t right, I hadn’t got the beginning down properly, or the middle, or the end, and then the plot was soggy here, and then it was too rushed there, and then a subplot had changed and I needed to go back and deal with all the knock-on effects, and then those shifted everything else out of balance…

I mentioned earlier that I started writing The Shadows when I was fourteen. I’m now thirty-two. I’ve been writing Sigyn for three years, and I’ve only just got it. And the only reason I’ve got it is because, finally, I started planning.

I’m part of The Golden Egg Academy, an editorial service and generally brilliant group, that has helped me immensely with my writing. One of the most important things, for me, is the GEA’s emphasis on breaking down your story into act structures (thank you, John Yorke), to make sure the plot rises and falls in a way that makes sense, that doesn’t drown the tension or drama in an ocean of waffle, and, most importantly, doesn’t leave the reader feeling bored or let down.

Towards the end of 2017, I met with the two editors who I’ve been working with to do through my story, and see what fitted, what didn’t, and how to make it work. I went away from that meeting with a few ideas, which became more solid when I broke Sigyn down into different beats (taking a technique from Save The Cat this time).

I’ve just started yet another rewrite. I thought I would be dreading it. Instead, I feel really positive, because, finally, it feels like I know where this story is going, and how to finally make it work. This time, I don’t just have an idea – I have a plan.

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A Cold Winter’s Post

It’s January, and it’s cold. And when I’m cold, you know that it really is freezing. I was walking to the station this morning, and saw a thin skin of ice forming on the river that I have to cross. I’ve had to have a hot water bottle the past few nights just to get warm enough to fall asleep.

I can’t imagine how unbearable it must be for people who have to sleep outside.

I work in Oxford, a city that has a huge number of people living on the streets, who have recently suffered immensely in the cold weather (this Change petition gives the full details). I want to help as much as I can, so I’ve been looking up resources that will help the homeless population in Oxford (and nationwide), and wanted to share them here.

Crisis Skylight Oxford, a branch of Crisis UK, does fantastic work in helping people find places to live and develop employment skills.

The Porch provides support, food, clothes, and training.

In my new home town, there’s Banbury Young Homelessness Project, which provides support, including academic and emotional support, to young people facing homelessness.

There’s a guide to other resources for homeless people in Oxford and Oxfordshire at this Daily Info page.

Nationally, Shelter does amazing work across the board for homeless people, while Centrepoint focuses on helping homeless and at risk young people.

This isn’t meant to be an exhaustive list, or a recommendation for any charities over others – just a starting point for anyone who wants to do something to help people in hugely difficult situations.

I’m going to finish this blog by moving away from the charity theme, and sharing a brilliant video featuring Neo, a singer-songwriter who is homeless and based in Oxford, and other members of Oxford’s homeless community. This video demonstrates how important it is to listen to any marginalised community, particularly when offering support – and it features some of Neo’s brilliant songs.

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Work in Progress: Writing Sigyn, Post Eight – Finding Focus

Doing a quick search for my previous blogs on my WIP Sigyn, I’ve realised two things. One – I didn’t blog about it for the entirety of 2017. I’d like to blame this on 2017 being a nightmare year globally, but really, it was because I spent most of the year trying to juggle too many writing and work things, and my focus on Sigyn suffered as a result.

Two – now we’ve edged over the line into 2018, I’ve officially been working on this story for four years. Writing is always slower than you think it’ll be.

But the time writing – and editing, and note-taking, and daydreaming about your characters and story and how they all fit together – is always worth it, because, in the end, things become clear. Over the past few days, when I’ve been doing the prep work for what I hope to all gods Norse and otherwise will be the final rewrite of Sigyn, I’ve had a feeling that I haven’t had about the story before. It was a feeling of clear recognition – a moment of “Oh, hello, there you are.”

Up until this point, working on Sigyn has felt like being stuck in the middle of a cluttered room, knowing that I have to keep shifting and moving everything around me until I can make sense of all the different bits and pieces, and, hopefully, clear some kind of path through the mess. Now, though, I feel like the story and I have finally stepped away from each other – but not in a way that makes me feel disconnected. Instead, it feels like Sigyn is finally its own, complete thing, and I’m able to walk around it and tidy, tweak and polish the pieces that need a bit of care and attention. I understand my characters, and I understand the story, and I finally know how they should fit together – and so the prospect of doing that final fitting has suddenly become a lot less scary.

How did this happen? I’m not completely sure – part of it is just the weird alchemy that bubbles through the writing process – but I know that a big chunk of reaching this point is thanks to the help and guidance I’ve been getting as part of The Golden Egg Academy (special thanks to Imogen and Abi). The workshops, meetings and discussions have helped me get to grips with the nuts and bolts of writing, and made me think hard about how to actually build a story (which, I now realise, is very different to putting down some good words).

And another part of it has been, I think, those four years – particularly the latter two. The world is a very different place than it was in 2014, and the things that have happened have made me think hard about pretty much everything, including what I write, and how and why I write it. Sigyn has changed a lot as a character in that time. She’s become much less passive, and much more driven to stand up for herself and for others – something more important now than it ever was.

One of my goals for the early part of 2018 is to get this final draft of Sigyn finished, and to do justice to my girl and her exasperating shapeshifter of a best friend, in every way I can.

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My Goodreads Challenge

Today, I finished my self-imposed Goodreads Challenge. At the beginning of 2017, I decided that I would read 50 books this year.

I mostly joined the challenge to get out of the reading slump that had plagued me throughout 2016. It was a crap year news-wise, and didn’t really leave me in the right frame of mind for reading – which is unusual for me, because I’ve always been a bookworm. I’m glad I decided to give myself that goal, because 2017 has continued in the crap-news vein, and I needed the kick up the bum that the challenge gave me to make sure that I read something other than the horror unfolding in the real world.

Looking back over the books I read in 2017, I’ve realised that I’ve read a lot more non-fiction that I would normally do – including the brilliant The Radium Girls, and Ann Rule’s terrifying account of her friendship with Ted Bundy, The Stranger Beside Me.

I’ve read some fantastic YA this year. The Hate U Give deserves special mention, because it’s not only a great story, it’s probably the most important book that’s been published for several years. Not Your Sidekick was another brilliant read, and I can’t wait for the upcoming sequels.

I’ve also dived even further into my love of clever, different zombie stories this year. Towards the start of 2017, I read The Girl With All The Gifts; I rounded out the year with the first three books in Mira Grant’s Newsflesh series, which I absolutely loved and would recommend to anyone who likes smart, well-thought-out dystopia.

I’m going to up the ante for 2018, and try for 60 books. What would your recommendations be?

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NaNoWriMo 2017

This month, I’ve been doing NaNoWriMo. It’s my first non-cheaty attempt. Last year, I started with 20,000 words of Sigyn right out of the gate and used it as motivation to write a final final draft (ah, optimism). This year, I started with nothing except an idea about a girl solving crimes with her punnily-named uncle.

I wasn’t sure I could do it. But now, nearly a month later, I’ve got the bare bones of a MG novel that I know I’ll be able to flesh out and turn into something I really love. I’ve also (because, being middle-grade, my detective story doesn’t run to the full 50,000 words) got some short story first drafts, a load of dreadful monologues by Sigyn characters that are helping me round out the backstories of my villains – and a couple of blogs, including this one.

Doing NaNoWriMo has brought me back to writing the way I used to. For most of this year, I’ve been finding it difficult to sit down and write even a couple of hundred words. Now, I’ve got into a habit where I can easily clear a thousand in a day. The more I write, the more ideas come, and the less I focus on making sure that the words are perfect straight away, the easier it is to set them down.

It hasn’t always been easy. I’m flagging a little by this point in the month, particularly as the actual first draft of the novel is done, and Sigyn edits are calling. I’m checking my word count a lot more regularly than I was at the beginning. But I have the first drafts of several stories I didn’t know were in me, and that makes me happier than I can describe.

Doing NaNo hasn’t just helped me get the words down – it’s also helped me notice a lot about my writing. I’ve always had certain images that keep turning up in whatever I write. In the past, it’s been climbing, or running, but this month, it appears to be zombies in the snow. Don’t know what that says about me, but feel free to psychoanalyse if you like.

I’ve also noticed things I need to work on. My MG novel was supposed to be funny – writing the first draft has made me realise that actually, I’m kind of scared to put jokes in my stories. I expect this has everything to do with the worry “What if people don’t laugh?” So, I know what I’ll be focusing on in my rewrite – shutting up the inner critic and finding the funny in a story that I know has potential.

Another aspect of the rewrite will be some intensive research. My heroine has a prosthetic leg, which is something I know barely anything about – so I’ll be reading, researching and listening, to make sure that I do the best job I can when writing her, and make sure that I keep mistakes to a minimum.

Finally, I’ll have to work really hard on structuring the mystery itself. Story structure is something I’ve always struggled with – the reason it’s taken me so long to write Sigyn is that I get excited about all the stuff at the beginning and the end, and completely lose my way in the middle. You can’t do that with any story and end up with something that people will want to read, but it’s particularly important to get the structure right with a mystery – otherwise, you don’t have a mystery, just a confusing mess.

I didn’t think I’d be able to do NaNo without the head-start I had last year, but I’m so glad to have proved myself wrong. December’s looming, bringing edits with it, but I’m looking forward to the challenge.

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