Portrait: Anonymous

I had a SAH in January, 2019. I was 29 years old at the time: fit, a keen sports person, and it came out of the blue. After initially labelled “lucky” and “getting off lightly”, I would later suffer some health complications. 2019 as a year was largely a write-off; I can count on one hand the number of good days I had health-wise that year.

Going back to work

Overall, I spent just under 10 months off work and around the 12 months mark, I was back at work full-time. My first week back working full-time was monumental. At the time I thought, or should I say I genuinely believed, that the nightmare was over. I was moving forward, and things were getting back to normal. I know now I had only completed the first step of a journey that is going to go on for many years. Although the first year of recovery was far from easy, this phase of recovery was also more straightforward. The first year was the year where I had the most support, where everyone gave me the benefit of the doubt, where the expectation was at its lowest for what I was capable. However, once I went back to work, a new reality unravelled. “He is”, they would tell themselves “ok now” and with that came new pressures as I began to think I should be ok, when I clearly wasn’t.

Although at times, it did feel like I was ok. That is when the Jekyll and Hyde experience had begun to emerge.

The highs and lows of recovery: Jekyll & Hyde

If I could describe my recovery in 3 words it would be ‘Jekyll and Hyde’, because this recovery has been such a varying and confusing experience. Living in recovery, for me, has been a journey of not only experiencing but living through a Jekyll and Hyde view of the world of ‘getting better.’ A world where I am actively trying to become well again and the closer I get, the farther it often feels. This journey brings extremes that often make no sense but also utterly balance things out. Walking contradictions.

It’s been hard, challenging, and heart-breaking at times -- all the things you might expect. Weirdly, it’s also been sort of beautiful, and sometimes, just sometimes, I am almost grateful for how it has given me a unique viewpoint on life that I’ve grown to value and respect.

To some people, I am doing great and thriving; an example of someone who got through this. To others, they see the day-to-day issues a bit more up close and personal. They see that maybe I am not doing as great. These two sides are with me all the time, acting as silent advisors on my shoulders.

The positive side is saying “talk about how well your recovery is going, how much you have progressed, give whoever is reading this a bit of hope, tell them it will get better, because it will get better, tell them about how you are happy, how much you have achieved since it happened, tell them to be positive, show them it will be ok because it can be ok.” The other side says “tell them the truth, tell them how hard it is because nobody told you, tell them that you woke up this morning in pain like you have every morning for the past few months, tell them that this morning you cried quietly all the way to work and didn’t tell anyone because well at some point you just have to get on with it, tell them it’s brutal, because they deserve to know the truth, it is brutal.”

How the pandemic impacted my recovery

By March 2020, I was 15 months into my recovery. It wasn’t until the world slowed down for the lockdowns that I would acknowledge that now, 3 months back at work full-time, I was really struggling to hold down a job and be an adult. As awful as the lockdowns were, they gave me a chance for me to catch my breath. I gratefully took the opportunity to sleep as much as possible for weeks. During the second lockdown, I went back to living on my own. I began to come to terms with the trauma I experienced. I cried a lot and began to realise I had been in survival mode and was in a lot more physical pain than I had previously acknowledged.

Coping with a setback and what is missing from the recovery journey

I started to get a better understanding of what happened and was able to be honest with myself and the people around me about how hard it was. I admitted to my boss that I wasn’t coping as well as I was presenting despite seemingly doing “well” at work. I began to realise the storm was passing. I had healed, somewhat. By September 2021, 32 months after I first got sick, I was doing well physically and mentally. I even went for my first run and that feeling of optimism lasted months. I thought I was well, until I wasn’t.

The pain and endless fatigue came back, along with breaking down crying in random places. However, I had learnt coping mechanisms over the past 3 years and had learnt what I needed to get back on an even footing.

Each day that goes past I learn a little more about what causes some of the side effects to remerge and how to adapt. No doctor has ever taken the time to explain any of this to me. I pieced it together slowly myself with insights from friends and family.

I am not sure if it’s getting easier, or whether I am getting stronger and more aware, but either way living with this has become a more durable experience.

Finding my way through healing

Recently I accepted that this might never fully go away, that I might have to live with the Jekyll and Hyde experience of my recovery for many more years to come: bad weeks, followed by good weeks, followed again by bad weeks might just be part of me for the rest of my life. But through each stage that I go through, even though I might not feel as physically strong as I once did, mentally I have found peace in this chaos.

In my experience, being in recovery makes absolutely no sense. It is a walking contradiction. Yet with time, support, patience, and kindness you begin to find your own way. Or at least I have.