Brian Tyrrell - Autism and Burnout - a guest post for Ehlers-Danlos, ME, Fibromyalgia, and Mental Health Awareness Month
All artwork copyright of Brian Tyrrell @dungeonsonadime
Brian is a multi-talented creative living in Edinburgh. He is founder of the inclusive role-playing magazine Dungeons on a Dime and secretary of the Edinburgh Zine Library. He has a portfolio of writing, illustrations and graphic design work. You can find him on all good social media at @dungeonsonadime.
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.
This month is Ehlers-Danlos Awareness month, this week is ME Awareness Week, and Sunday is Fibromyalgia Awareness day: so I wanted to write a little here about my illnesses, and how living with chronic fatigue (CF) goes hand-in-hand with them. I’ve asked a couple of fellow sufferers (and creatives) to also share their experiences of living with CF and how their various disabilities impact it, and will be sharing those on here as guest posts over the next few days.
It’s my hope to raise awareness of what living with CF is like, but more than that, to build an empathy around it. It’s our general practitioners, specialists, social networks and family who are the vital support system we rely on, to help us and give us strength when our illnesses threaten to overcome us or worse, become our singular identity. It’s important that this support system is informed, not mislead, and fully-equipped to support sufferers in the best ways possible.
I’ve written a few articles about my disabilities, a couple of which are online: about the pressure to ‘succeed’ at work and the blatant disregard and lack of support for chronic illness sufferers in the workplace; and about the stigma around chronic pain and the toxic hero-worship of ‘recovered’ sufferers. I’ve also participated in a podcast with author and fellow fibromyalgia sufferer, Ever Dundas (which will be publishing sometime in the next month or so) about our experience of living with our illnesses, so do keep your eyes peeled for that too.
I wanted to use this space to shed a little light on what exactly ME, Ehlers-Danlos Syndrome (EDS) and Fibromyalgia are, what they have in common, and how they affect sufferers. It’s important to highlight that no two people’s experience will be the same: in as much the same way that were are all unique, so is our experience of living with these illnesses, and what may work for one person, might not work for another. I’ll be doing a separate blog later about the various coping techniques I find helpful, and the (many) ways in which I mitigate my symptoms (pacing, anyone?)
ME, Ehlers-Danlos Syndrome and Fibromyalgia
So what is ME (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome) Ehlers-Danlos Syndrome and Fibromyalgia? Well, as with all of these illnesses, the classification, ‘syndrome’ encompasses a myriad of little-understood symptoms, which can affect sufferers profoundly, or not much at all, depending on the person. Predominantly though, sufferers live with crushing, constant fatigue that isn’t relieved with rest; muscle pain; and difficulty with mental processing, also known as ‘cog-fog.’ Due to the crossover symptoms and occurrences of these illnesses (co-morbidity) it can be hard to identify what’s going on and which illness is responsible for which symptoms.
Testing and Assessment
Ehlers-Danlos has thirteen sub-types, twelve of which can now be tested for, as they have an identified genetic marker. Severity exists on a scale, with Type 3, aka Ehler-Danlos Syndrome or Hypermobility Syndrome as it’s now classified (since March 2019) being the mildest form and the only one without a genetic marker, so far. It’s the type I have. It is assessed via a physical examination and a questionnaire. Fibromyalgia is also assessed by a physical examination, as is ME. It is advised that general practitioners carry out a blood-screening to rule out alternative causes before exploring any of these illnesses as a possible cause. I was checked for low vitamin D3, low B vitamins, low ferratin and my liver function was checked along with my thyroid. All fine, so it was off to the rheumatologist I went.
My experience with NHS is a long, painful one. I think this seems to be the norm, unfortunately, but I will write about this in another post. I was referred to see a rheumatologist on two separate occasions, first when I was diagnosed with fibromyalgia and secondly with Ehler-Danlos Syndrome. They present many of the same symptoms, however fibromyalgia has specific ‘trigger’ points for pain which are part of its classification, keeping it separate from other illness classifications. (I see my illnesses as part of one, big umbrella of symptoms). I have about eleven pairs of these trigger-points (in a mirror-image, either side of your body) which when pressed with medium pressure become very sore, very quickly. Pain will often radiate down the body from these points when triggered, a bit like a musical string. I also suffer from intermittent IBS, migraine, muscle soreness and stiffness, and chronic fatigue, which is exacerbated after exercise (also a symptom of ME). Fibromyalgia = check.
Helpful info: http://www.fmauk.org/
#spoonie #chronicpain #fibromyalgia
Ehlers-Danlos Syndrome also presents muscle pain, stiffness, headache, IBS, joint pain and chronic fatigue, with the added bonus of Postural Tachycardia Syndrome (POTS). It makes your heart leap out of your chest like a horse at the races every time you stand up or climb stairs or have a coffee (mine was horrendous when my chronic fatigue was at its worst, after I burnt-out spectacularly, two years ago). It makes life extremely difficult and you worry every time you move, your ticker is going to give-out. So yeah, that’s great.
But EDS’ defining classification (like the trigger-points for fibro) is the presence of hypermobility in the joints. This can vary wildly from extreme (joints popping out of their sockets at will, several times a day) to mild (subluxations, cracking joints, and stretchy skin – like what I have). Essentially all three sub-types share a common denominator: poor collagen. We don’t make the right stuff, and we don’t hold together as we should. (I like to think of it as, you’re made with Super-Glue and I’m made with glue-stick, Tesco own-brand). Because of this, our joints are hypermobile and can bend to angles that just shouldn’t work. They don’t protect our muscles, therefore, from over-extending, and they get damaged. Hence the pain and stiffness. It’s important for an EDS sufferer to strengthen their muscles to protect them. Yoga and stretchy-shenanigans should only be approached under the guidance of an experienced, informed instructor, and only once a base-level of strength has been established. Pilates is your friend.
Helpful info: https://www.ehlers-danlos.org/
#timetodiagnosis #invisiblevisible #EhlersDanlosAwareness
So that brings us to ME; a ‘diagnosis of exclusion’. It presents with all of the above symptoms, but it lacks the defining symptoms of fibro’s trigger-points, or EDS’ hypermobility. And it’s probably the least understood. However, research is picking up with some interesting preliminary findings. It’s a case of playing the waiting game. It comes out of the blue for many, often following infection or trauma. For others there is no discernible cause. Many sufferers are bed-bound, unable to even lift their head. In milder cases, if a sufferer can be physically active, such as walk about, they often experience and extreme level of fatigue which can last for days or trigger a flare-up lasting weeks or months, or in some cases years.
These are serious, life-long illnesses which hugely disable those who live with them. Because they are little understood, a stigma builds up against them, which is damaging to sufferers, to whom support and understanding is a key part of managing a disabled life.
I write openly about my issues with my mental health, and the two are intrinsic to one another. When I’m having a pain flare, or my brain won’t work, my anxiety spirals, and I feel extremely depressed about my health. When it’s a good day, I find my mood is great and I feel positive and hopeful about the future. It’s an exhausting dance that we do, between two ends of a spectrum, daily. Just being chronically ill, and dealing with everything that comes with that, can make everything worse. It’s so important to have a strong community around us.
To be told you are invalid because of your health (by society, employers, the benefit system) is utterly soul-destroying and it takes an enormous amount of strength to keep moving forward, researching different approaches and treatments, trying to find ways to continue to work (no thanks to our horrendous benefits system, I talk more about this in the upcoming podcast) and generally trying to find the light in every single (often dark) day.
Several celebrities have recently opened up about living with their invisible, chronic illnesses, throwing much needed light onto the difficulties faced by sufferers: and importantly, smashing the stigmas that disabled people can't enjoy full and happy lives, and success. Just look at Lady Gaga, who lives with fibromyalgia, or Selma Blair, who has Multiple Sclerosis, or Natasha Ngan, who has EDS. All successful in their fields, all living day-in-day-out with disabling, chronic illnesses.
David Grotty, Getty Images
The rise of social media has seen a surge in online awareness campaigns such as #DisabledPeopleAreHot and #DisabledandCute which people are embracing all over the world, to empower, support and encourage people to speak out and build a community. Invisible illness even has it's own mascot — the zebra; symbolizing the rarity and uniqueness of chronic illnesses.
We're told by our government that we aren't ill enough to be supported.
By our society that we're not sick because we don't look it.
We're told by our employers that we are a liability.
We are told that we can't be sick, if we are successful.
We must be fearless, like them, and shape our own narrative.
I hope that the upcoming guest posts will resonate with you: either because you too, are going through it, living with it, struggling and surviving it; or because you know someone who is.
We hear you, we see you, and we understand you.
And our voices will be heard.
Award-winning novelist, Ever Dundas, and Robin Spinks, Innovation and Technology Relationships Manager at the RNIB, discuss access for disabled people to technology in the current face of austerity.
Dundas opened with a powerful reading from of her freedom paper, What Is To Come, fittingly set against an atmospheric backdrop of drumming and eerie sounds, which raised the tension of the audience to the level of the topic in question. “Freedom is a world without capitalism”, she read, “I will not be your martyr, I will not die on this capitalist cross.” Her articulate and deliberate words, were delivered with the expert control of one well-used to fighting for their voice to be heard: in this instance, above the din of the current capitalist regime of a conservative government. Words which were received with tumultuous applause.
Dundas shared her experience of the welfare system, having applied for both Employment Support Allowance (ESA) and Personal Independence Payment (PIP) due to her disability, fibromyalgia. Dundas feels the system is completely broken, serving only to punish and humiliate disabled claimants. “They were surveilling me through my entire assessment, to the point of noting on file that I was able to stand up from my chair, and lift half a cup of water from the table.” And deciding, ultimately, that she is not ‘disabled enough’.
Spinks agreed that there is no room for nuance in the current welfare system. He highlighted that disability exists on a spectrum and that our government neglects to address that, only perpetuating and reinforcing stigma. “We should not be peppering our disability assessments with assumptions, but instead make it an assessment of disabilities but also aspirations.”
Both agree that the narrative needs to change and that it must be more complex. The RNIB are running a campaign, #HowISee, which aims to address the misunderstanding of the general public on the nuance of sight-impairment, pointing out that technology is helping us to reform the narrative. “Tech is a great liberator, but understanding must be nestled alongside it – not bureaucratic questions.”
Our current system puts people off at the first point of call, and access to work becomes the first blockade to those looking to get support in going back to work, says Spinks. Yet, technology has bridged the gap for many, when it comes to living with disabilities. He and Dundas shared their own moving accounts of times when technology has done so for them, demonstrating the power of tech to do good in our society. But even good tech must re-evaluate and consider the needs of its disabled consumers, by making adaptable devices. Accessibility is also a major issue, with many adaptable devices costing too much money for those who need it. Dundas emotively described how her world shrunk when she became ill, and how something as simple as an electric bicycle would expand it enormously. Sadly the cost is simply too prohibitive.
Spinks believes that all tech developers should be legally bound to advance life for disabled people, and that the narrative would be changed by having a rolling programme of “embedded understanding” in these companies. Dundas firmly believes that raising awareness in the public sphere is the first step to changing the narrative, and for her, that’s writing about it.
The last lines of her freedom paper – a calling for the disabled to unite against austerity – resonated the quiet but determined hope of the audience, at the end of this bolstering discussion (if not a debate.)
“We hold our idealistic dreams in our hands like flames and we will raze capitalism to the ground. Out of the ashes: rejuvenation ripe with possibility, the freedom of a new beginning.”
Publications, thoughts and reviews
On themes of mental illness, disability and YA.