Shannon's story

2017 would prove to be one of the most complex, life-changing and humbling years of my life. At the age of 20, I would go from being a chirpy millennial spending my days on social media or at college to a SCAD survivor whose passion was to make every day count.

January 27th 2017. It was 5pm and I was sitting on my bed and scrolling through my phone with my partner metres away from me. College had been hectic as my dissertation deadline was approaching and universities would be in contact soon. Life was just beginning.

Ouch. A sudden slice of agony cleaved its way across the crook of my arm. My spare hand grasped the area in an attempt to soothe the urgent, hot pain. Almost immediately after, the same sensation coursed through my chest and I slumped on the bed, dropping my phone.

Calum turned to me and asked what was wrong. I had no idea, but what I did know was that it didn’t matter how I lay, how I breathed nor how I sat – this pain wasn’t going away. He quickly Googled my symptoms and all we could see were endless results, page after page: heart attack. I scoffed. “I’ll just call my Dad, I know if I’m being melodramatic he’ll tell me.” But he didn’t. I can still remember the momentary pause before he urged me to pack a bag and get to hospital immediately.

Twenty minutes later and I was at the Glasgow Royal Infirmary. I felt uneasy about approaching the reception desk. They’re going to think I’m an idiot. I could see a child with what looked like a broken wrist, a woman who was violently vomiting, a person sobbing in a wheelchair – yet here I was with what was probably indigestion hogging up valuable space.

Tests were done in minutes which made me feel even worse. Had I just queue jumped all these poor people? Once I was sent back to the waiting room, I barely sat down before I was called through. I guiltily slunk past everyone and told Calum I would be back in an hour.

Three hours passed and in the end he had to come to me – it became apparent I wasn’t going anywhere. Blood tests, and more blood tests, and more blood tests. It got to the extent my other arm had to be used despite how much pain it was in. I was covered in sticky tabs from ECGs and panic was starting to set. I was so panicked, in fact, that over the entire week I was in hospital I was on autopilot and everything went by in a blur.

“Are you sure you haven’t taken any cocaine? You know you can tell us, right?”. As someone who had been drug free their entire life this was a kick in the stomach. “Do you maybe party a little too much? Or go out with friends a lot, maybe take some fun things?”

According to one of the nurses I was the youngest in the ward by over 20 years. There was even discussion on where to put me as I was too old for the children’s ward but half the age of the next youngest on this one. I couldn’t help but feel the wild student stereotype was what kept me in the hospital so long because it implied my pain was likely caused ‘unnaturally’.

After countless ECGs, daily injections to the stomach, multiple pills and blood tests, an ECHO scan and an MRI I was finally set free. I remember walking out with Calum and my Mum, nearly crying at the sight of seeing the stars and feeling the crisp winter air on my face. Myocarditis, a complete fluke, and it was all over.

Downward spiral

But I was wrong. This would just be the beginning of what I can only describe as a horrific recovery. My body was so sore and tender from head to toe I couldn’t even shower myself and needed Calum to assist me in even the most basic things like lifting a kettle and turning on taps. It was so bad I couldn’t even leave the flat and before long I was kicked out of my college course for poor attendance.

My dismissal sent me on a consequential downward spiral. I was isolated to the same four walls for several painful weeks. My SAAS payments were stopped meaning I feared eviction on the other side of Scotland to my family. My dreams of going to university were crushed as I hadn’t completed my course. I went from being optimistic to pained, planless and penniless all in a matter of weeks.

Meanwhile my friends were celebrating – they’d received their grades and were excited for their new courses. They were meeting new people and going on summer internships. There was a farewell class night out that everyone but me attended as they went on to bigger, better things. Whilst all this was going on I was internally screaming in frustration, bedbound by my own body.

I’d always behaved. I hardly drank and hadn’t even experienced a hangover. I’d never had drugs and nor had I smoked. I studied hard and had fantastic attendance. So why did my body betray me?

Seven months later, I would get an answer. I received a letter explaining my scans had been sent to a panel in Leicester who believed my heart had evidence of “ apical lateral subendocardial late gadolinium enhancement ” and I was to meet a doctor who could explain what that meant.

“SCAD,” he said, “stands for Spontaneous Coronary Artery Dissection. Long, isn’t it?”. I nodded, praying I would even remember the acronym. “To put it simply, what it means is that your artery walls spontaneously, or randomly, tore themselves. This tear was what caused your heart attack.” At first this seemed fine, until of course it wasn’t.

What do you mean I’m not allowed to do weight lifting? But exercise is good for you right? Well, how am I meant to build up strength then? Yoga and tree-poses aren’t going to do that.

Hold on, why are my migraine tablets being taken away from me? But I need them! I just have to grin and bear it? Okay, I guess. The contraceptive pill is risky? Oh, okay, and what about other hormonal control methods? But if they’re risky too, what am I supposed to use?

Luck and prayers I suppose. No more energy drinks? Hmm, I guess that’s fine even if early starts will be sluggish. No go-karting? Hold on, seriously?

Whilst I didn’t need any of these things to live, I certainly noticed their absence. I didn’t feel 20 any more, I feel like a scared child trapped in an elderly body. I was too afraid to sip alcohol in-case I died. I developed orthorexia, afraid if I consumed anything other than oats, tomatoes or mackerel I would die. 1,200 calories every day, the same three meals every day, all prepared by me and for me.

I became underweight, exhausted and depressed. My friends didn’t contact me much these days, I wasn’t fun any more. My mum would desperately try and get me to eat anything she could, trying to reduce my excessive measuring of nutrients and vitamins and weighing up how I could create the perfect heart diet. It was only once I lost my muscle mass and looked grotesque I realised I’d just punished myself. Instead of nurturing my body I was condemning it to poor health instead, the irony biting like frost.

I didn’t want to live in fear

That was my Aha! moment. I didn’t want to live in fear of my ‘next’ heart attack, because whilst it was possible I could have another it was just as possible I wouldn’t – that’s the point of spontaneity. I would never know and no amount of bubble-wrapping and punishment would change that. I remember writing down in my journal: take the steps today that the future will thank you for. I’ve tried to stick by that rule ever since.

I applied to as many jobs as I could locally and found myself a waitressing job under caring, perceptive employers who were willing to take a chance on me. I went to my first music festival and even fell in love with food again (maybe a bit too much!) and discovered a passion for baking and cooking. I started writing fiction again and set a target to read 50 books that year, which I achieved. I even found myself back at college and, at the time of writing this, will finally be going to university after the summer.

Just when I thought things couldn’t fall more into place, it turned out that I knew a fellow ‘SCADster’. A previous teacher of mine in high school had the same condition although the chances of that in an area so small were near impossible. Today, I fondly refer to her as my ‘heart mum’ – if you had told me that in high school I wouldn’t have believed you! I cannot thank her enough for all she has taught me.

In fact, it was through my ‘heart mum’ I discovered I’m not alone and there are hundreds across the country like me. My only wish was that I’d known about Beat SCAD before. For a community of people across a variety of different backgrounds, ages, genders and beliefs to all share something so powerful is incredible and I am proud to be a part of it.

At the age of 20, I would go from being a chirpy millennial spending my days on social media or at college to a SCAD survivor whose passion was to make every day count.