S E Smart - Brace Yourself - a guest post for Ehlers-Danlos, ME, Fibromyalgia, and Mental Health Awareness Month
Thank you to Julie for inviting me to share this story about my life (so far) with chronic illness.
I’ve been chronically ill all my life, with a diagnosis only relieving me of the ‘hypochondriac’ label a few years ago. It was not for want of caring – my mum did take me to the Drs when I complained about painful legs as a child (tests showed it was not juvenile arthritis), and when I blacked out as a teenager (tests showed it was not epilepsy), and when I had unexplained fevers. She’d pick me up from school when I was crying about painful ears, and she took me to casualty when I broke my arm. But when test results found there was nothing wrong, over the years life just went on. I was a bit sickly, accident-prone, broke bones, turned my ankle over, had sore throats and earache, and I fainted, but I wasn’t always at the Drs. I’d complain of an issue, mum would take me, they would investigate and find no cause, so I wouldn’t mention it again. How did I know everyone didn’t feel the same way? Things were explained as growing pains, clumsiness, and as being ‘normal for a teenage girl’. I know now that these are familiar tales - there will be plenty of people nodding along!
When I was 16 my dad died, and I got glandular fever. I went to the GP feeling terrible, with significant weight loss, and was told I was depressed. It took months for anybody to test my blood to find that I had a virus and treat it. This ‘depression’ label stuck, I think, and forever more blinded my GPs.
It took a while, but I eventually recovered from the long-untreated glandular fever, and again life went on. I had an inkling I wasn’t quite like everyone else - I couldn’t keep up when I went bike riding with friends, I seemed to hurt myself a lot (Sarah’s at A&E again!), I often had some limb or other strapped up. But I was energetic, I never stood still, I loved to dance, I had ambition, and I was doing well. I moved in with my first boyfriend, we got married, we worked hard and saved up, bought a house (I found out I was a dab hand at DIY), and eventually we had a beautiful son. Nobody would think for a moment that I was carrying around a hidden illness, trying not to complain about aches and pains.
After my son was born I snapped back into my size 8s, took him on long walks in his pushchair and felt as healthy as I had ever been, now in my mid-30s. I wasn’t bothered by the night-time feeds – he was a good baby and waking up to feed him was a complete pleasure. I loved being a mum, and looking back, I felt quite well – and happy.
Sadly, our long relationship broke down and life turned on its head. Soon afterwards, I started to become unwell again, with constant strep throat, fevers, and exhaustion like I had never known. I didn’t know that the Drs had decided I had post-natal depression (I saw it on my notes years later and refute this wholeheartedly) and while I was returning to my GP trying to explain how unwell I felt, they were so certain I was just sad that I was given antidepressants and asked to complete suicide-risk surveys. The fainting was ‘panic attacks’, they said. But after my 11th bout of strep throat in a year, they decided to take my tonsils out.
I’ll never know whether it was the recurrent strep, or the year of taking antibiotics, or if it was the falls that put me in plaster, or the contrast MRI I was given when a couple of breaks didn’t heal well, or the anaesthetic for the tonsillectomy, or the stress and upset of starting life all over again after my marriage broke down, but the decline in my health that year was significant. I went from having niggling symptoms to being really quite unwell. I was passing out so often that I was eventually sent for tests, having had to surrender my driving licence, and was diagnosed with Postural Tachycardia Syndrome (POTS) – an explanation which came as a relief, rather than a worry, but came with no treatment.
I tried to settle down with that diagnosis, but after a few more years I was sure that there was something else going on – POTs just didn’t seem to explain everything. I was getting nowhere with the GP who had decided I was just sad, so I saw a private Rheumatologist who diagnosed Fibromyalgia. These two diagnoses combined were enough to give me some understanding – that following the perfect storm some years before, life had changed, and I had to change with it.
Some years later, struggling to live anywhere near a normal life, I found myself in front of a new GP, who with fresh eyes came up with a new theory. I was referred to a specialist who diagnosed Ehlers-Danlos Syndrome. It was also discovered that I had a small ADS (hole in the heart).
Finally, now in my mid-40s, I had the truth. That year of sickness had triggered the hidden genetic illness to reveal itself in its newer, more aggressive form.
So, to today. What IS it like to live with chronic illness? You know what – it’s OK. It’s still a life! I’ve had the relief of a diagnosis for a few years now so I know what I am dealing with. There’s not a whole lot you can do about it – I have medication for the POTs now, but other than that there is no cure. I take pain relief, I take things to help with the common comorbidities (digestion issues, deficiencies, anaemia, allergies etc). But I know now that my pain and fatigue are real.
I work part time, term time only in a lovely little job. I work 8:30am until 3pm three days a week, and by 3:45pm I am back in bed. My alarm wakes me at 5:30pm when I get up and make us food - something that I can just pop in the oven with a timer on. On the two days a week that I don’t work, while my son is at school, I go back to bed for the day. My week follows a pacing plan which just about works – it’s a struggle and fatigue is crippling, and pain is debilitating, but I’m still here. I see a physio for back, hip and shoulder pain thanks to subluxating joints, but there isn’t much they can do. I use braces to steady whichever joints are causing the most bother at any particular time.
Not many people at work know – I prefer it that way – so I can just be me, and not sickly Sarah…
I remain single, and that is largely out of choice. It means that I don’t have to apologise for my bad days, and I don’t have to feel ‘cajoled’ into doing things I can’t really manage. I don’t go out-out any more, we stay at home at the weekend. I don’t go shopping, we don’t eat out – many might think we live a bit of a pointless existence because these things are out of reach, but you don’t miss what you don’t enjoy. Fatigue, pain and fear (anxiety after fainting in public and being scooped up by ambulance several times) all take the enjoyment out of what other people do without a thought. Sometimes, in the school holidays, we might manage a gentle walk. Last summer we went out for a stroll around a nearby fishing lake and we talked, and enjoyed the fresh air, but that was in the knowledge that I had recovery time available for the week or so afterwards. There is always pay-back, and I knew I would be overwhelmingly fatigued and that I would be in pain. I can only deviate from my pacing routine a little before it fails me. I don’t qualify for health-related benefits (I didn’t score high enough on my PIP assessment) so I have to maintain enough energy for my job, lurching from school holiday to school holiday when I can up my rest, ready for the next half term.
But there are still many brilliant things in life – my friends, who are always available on messenger if I fancy a chat, and my family, along with my handsome, kind, clever and funny son… and I have found ways to seek pleasure in simple things. Sitting in the garden (albeit in the shade thanks to my sun allergy – Mast-Cell Activation Syndrome is common for EDS patients!) is a lovely way to spend some time. I read a lot, when I can focus, and there is a whole other world in the pages of those books. I like to watch TV, and films – always lying down on my sofa as I only ‘sit’ upright when I am at work.
And last year, over the school summer holidays, I grabbed my laptop and wrote a book! I didn’t know if I could do it, but I wrote in short bursts and self-published a novel about – guess what… a character who is chronically ill.
It was great therapy, having only received my diagnosis a couple of years beforehand it helped me to process my life so far. But I also wrote it for other people who may have similar experiences and who may feel alone with them. I’d noticed on forums how excited people became if EDS, POTs or similar conditions were mentioned on TV, or in a magazine article. It was validation, and community. So, I wanted to write a novel, not so much about chronic illness, but about somebody who happens to have chronic conditions. It is own voice, and this might sound implausible, but it is also (I hope) funny! Because I never lost myself, or my sense of humour, and I wanted readers to see beyond the illness to the character. To know that behind every diagnosis is a normal person, doing their best to live a normal life.
I wanted to shine a light on the often-hidden issues of living with chronic illness by writing them into a rom-com – easy reading for us fatigued folk who often struggle with brain-fog, but relatable, honest, and fun. The title Brace Yourself is a nod to the various braces and supports people with connective tissue disorders rely on, and the cover features a hint of zebra pattern, as people with ‘rare’ conditions are known as medical zebras. It is a ‘call’ to my people, and I have been lucky enough to receive some lovely messages from readers who have been on similar journeys.
Sarah lives with her teenage son in East Devon, where she works part-time as a communications officer, and she recently wrote an indie-published book featuring a character with chronic illness: Brace Yourself: a chronically witty novel.
Self-Care for Writers – How to look after Your Emotional Wellbeing
We often hear writers talking about the emotional rollercoaster their characters endure, as they fight against the odds to overcome whatever problem the writer has chosen to place in front of them. There has to be stakes – high ones, preferably – in order for the reader to emotionally invest in the character. Plot, pace and dialogue only get us so far. We have to really care about a character to follow them to the end of their journey. How do we, the writer, achieve this? How do we get our readers to gasp, laugh and cry along with our beloved character, just as much as we do? And at what cost to us, emotionally?
Own-voice is trending in the industry, with an increasing number of agents and publishers keen to hear from own-voice debut authors. Why? Because it’s compelling to read a story which is directly informed by the writer’s own life experiences. We are curious creatures: it’s one thing to feel empathy towards a fictional character; but it’s a different thing feeling empathy for a real person. It brings an extra punch to the reader’s experience. Someone real has lived their experience – it’s another layer of connection.
For the writer, going down the own-voice route can be as emotionally taxing as it can be cathartic. Every writer relies on their own experiences to a degree; but an own-voice writer will focus on a particular theme or experience which is or has been prevalent in their life. Own-voice is usually marginalized writers: be it writing about mental health, sexuality, race or class; these themes are most often explored in own-voice novels (think The Hate U Give; All the Bright Places; Simon Vs The Homo Sapiens Agenda).
My novel, Fractal, is an own-voice exploring mental and chronic illness, as well as themes of loss, love and self-discovery. Don’t get me wrong: it isn’t a play-by-play of my life, but there were many moments which were difficult to tackle, and which left me exhausted after some relatively short writing stints because of the emotional draw. At times I was sobbing my heart out over everything I knew my characters were feeling – everything I was putting them through – in order to be true to the story and make it the best it could be. The beauty of painful experience, is that it shapes us, and if we’re lucky, it makes us stronger. But the investment in our writing can be costly, when it comes to our emotional wellbeing and so we must proceed with care on the toughest days.
Awareness & Empathy
This emotional investment is the key to creating a compelling story: and it’s not exclusive to own-voice writers. Writers tend to be hugely compassionate, sensitive people who are emotionally in tune with their self and those around them. They are also keen observers and insatiably curious about others. A writer who notices the nuances in reactions and behaviours of those around them will have a database to rely on for life. These are the people who can readily step into another person’s shoes, try to imagine another life, another way of thinking, of being. This is hugely rewarding and results in distinct character voices, actions and motives – making for a visceral experience for the reader, who is transported into the mind of the characters instantly. I know in my case, when I’m switching between characters quickly in a scene, the emotional jumping can lead to a sort of emotional fatigue; it’s the same after writing a highly-charged scene. I find I feel depleted and need to take the rest of the day to allow my mind to wander, or undertake other less taxing pursuits like going for a walk or a swim (illness allowing). The next day the battery has re-charged and I’m back at it, perpetuating the emotional cycle.
The great saboteur of the aspiring author. We’ve all been there: tearing our hair out endlessly over the same chapter, scene, or sentence; wondering why, universe, why did I think I could do this? Who am I? Just a wannabe writer, with a big dream. Like millions of other people, how am I any different? Imposter Syndrome is the biggest killer of aspiring authors. Beware. I won’t be the first person, nor the last, to say it, but here it is: if you don’t believe in yourself, how will anyone else? First and foremost, you must believe in your ability to write. Secondly, you must believe that you are the only person who can tell this story. Because you are: it’s yours, and only yours, to tell. Once you have those two things, do not let go of them. The time will come when the impostor takes over, makes you feel three inches tall, and whispers poisonous things into your ear through the night. But don’t listen. Keep reminding yourself that you are a writer, a good one, and you can do this. Talk to a friend, or several – ask them to remind you why you are doing this. We’ve all been there. It gets easier with time and soon you’ll be able to ignore it (most of the time).
Is the thing that will get you through. So many writers let the impostor win. You must keep pushing, keep fighting the demons and the nay-sayers, to get where you want to be. It’s the only way. It’s damn hard. Any writer who expects the journey to be an easy one will be in for a shock. You must be prepared for the long haul because, at the end of the day, resolve is the only thing going to get you over the finish line. You might be battle-scarred and bruised, but damn it, you’re going to get there. When you’re tired, run-down, writing on top of a full-time job and raising a family, the hours for writing can dwindle down to nothing, and it can seem like an impossible task. In my own experience, living with chronic fatigue, fibromyalgia and generalised anxiety, the bad days do happen, and the best thing we can do is accept it, and try again tomorrow. Sometimes a bad day becomes a bad week (or in my worst-case scenario, six months) but knowing that it won’t last, that there is light at the end of the tunnel, keeps us pushing through. There will always come a moment when you can put pen to paper again – and that’s all you need. It’s an unfortunate truth that if you really want to write, you must make the time. It’s up to you how you find it, but you must find it.
Writing is a lonely business. Loneliness and isolation make for a stagnant state of being. My most productive writing has happened since I set up a weekly writers group. I made the shift from freelancing (after a breakdown in my mental and physical health) to writing full-time at the start of the year, and it was tough. I was used to being busy, traveling a lot, running events etc. and I was suddenly alone, at home, all the time. My mood quickly plummeted and my generalized anxiety escalated. I knew I had to do something, so I organised a writers’ group. I made friends quickly, and discovered there were so many other writers out there like me, looking for a support network. We all noticed a bump in our self-confidence, mood and productivity from our regular meetings. It was only after a few weeks of going to this group with other writers, all at different stages of their career, that I made the mental switch, the shift in my self-perception, which allowed me to call myself a writer. I’d been writing for a few years, reviewing events mostly, and I’d had a personal essay published. I’d written the first 25k of what I hoped could be a novel. But I didn’t allow myself to call myself a writer. That was in January. Now we’re in October and the novel is finished, I’m in the midst of revisions and will shortly be sending out to my beta readers. I’ve had articles on mental health and chronic illness published, along with more personal essays, and I’ve submitted to several awards and competitions. None of which, I’d have likely done by this point, had it not been for the support of the group. Feeling valued, and that you belong, goes a very long way indeed, to being a successful writer. Having people around you who understand what you are going through, who you can talk to, and who have your back at your worst and best moments, makes all the difference to your emotional wellbeing as a writer.
Publications, thoughts and reviews
On themes of mental illness, disability and YA.