Recovering from COVID-19 with a chronic health condition

The Hero’s Journey story and why it makes people react inappropriately to your chronic condition,


My chronic illness started with a Big Bang. Only months before I’d been a fit, health conscious 35 year old career woman, living in Australia. We were blessed with two lovely babies, a loving family and good friends. My future was extremely bright, until it wasn’t.


Quite suddenly, my tooth and face started to hurt a bit. Within three days I had searing nerve pain all over my head and face. It felt like someone was electrocuting me in the back of the head. My teeth felt like they were all being pulled out at once without anaesthetic. My ears whined to a deafening level. I felt like my head would explode from the intensity of the pain and pressure. I could not lie down or have anything touching my head. I sat up on the sofa, in the dark, for three days and nights, focusing on breathing in and out and breastfeeding my newborn baby at four-hour intervals.

Anyone who lives with a chronic condition will recall when their symptoms started. It could have started dramatically or as a slow slide into increasingly challenging symptoms. The horrific nerve pain in my face was the beginning for me. For others, it may be a back injury which never improved, a virus that ended in ME/CFS, migraines which wouldn’t go away, a bit of joint pain which morphed into fibromyalgia, dizziness which was the start of MS. The list of possibilities is endless. But what these situations have in common is that when they started, you expected them to go away, and that you would go back to your old life.

In the beginning, I was still in that mental space occupied by the health-privileged. I thought I just needed to find the right doctor who would know what to do and then I would get better. Popular perception, despite ample evidence to the contrary, is that medical science has progressed to the point where every health problem has a diagnosis and a treatment. You are sick, you are treated, you become well again. That’s the way it’s meant to go. 

When it doesn’t go this way for you, it makes life difficult in a number of ways which are not actually related to coping with the illness itself. That’s what I’d like to explore in this blog. There are many ways chronic illness makes life challenging, but I’ve been noticing so much on the ‘Hero’s Journey’ narrative lately, particularly in relation to COVID, that it got me thinking about what an incredibly strong grip this story has on our culture and how that disadvantages those whose story doesn’t fit.

The ‘Hero’s Journey’ narrative was popularised by Joseph Campbell and features in innumerable myths and stories across cultures. In brief, the hero is called to go on a great journey and battles the dragon/problem until he emerges victorious and returns home a hero. In the extended version of this narrative the hero also takes meaning from his experiences and indeed comes to view his travails as a welcome lesson which have allowed him to grow physically, emotionally and / or spiritually.


We love this narrative and it’s everywhere. In the news, we love the stories of people surviving earthquakes, swimming across seas to save themselves, ‘beating’ cancer, ‘reversing’ diabetes. We especially love hearing how much better they now report being as a person as a result of whatever they have been through. Sometimes the hero of the story will come in the form of another person who saves someone from drowning, pulls them from a burning building or, even better, in the form of a doctor who finds a solution when no one else could. There’s a reason ‘House’ was so popular!


When we are involved in events which don’t follow this story-line we initially feel cheated, bewildered and that there has surely been some mistake.


Belief that there will be a solution, that we will emerge from our trials a hero, that hardship is bestowed upon only those with the fortitude to win out or those who somehow deserve their dreadful fate for their wrongdoings, are very reassuring things to believe. These stories appear again and again in books, newspapers, box sets and films. They are also central to some religions.


We are repetitively told that those who persist, who have grit, who are smart, will triumph over their problems and emerge a better person.


It creates a safe, consistent and fair view of the world in which we can go about our business secure in the knowledge that bad things won’t randomly happen to us, which we won’t be able to fix. Who on earth wants to believe that? Nobody! No one wants to sign up to the philosophical ideology known as ‘sh*t happens’.


And that’s where denial and blame come in. Denial of those with chronic conditions, denial of the validity of their symptoms, denial of our knowledge of our own bodies and often denial of our mental stability. Those around us may feel more comfortable believing that we are lazy, not trying hard enough, an attention seeker, somehow lacking in fortitude and moral fibre, than to face the reality that healthy people become sick and sometimes don’t get better.


By far the hardest thing to get your head around when it comes to chronic illness is the ‘chronic’ part. Maybe, like me, you can recall the moment you realised this wasn’t going away. Maybe, like me, one night you put your kids to bed and overwhelmed by being in pain all day, you locked yourself in the bathroom and slid, quietly sobbing down the wall, overcome by fear so intense it made you want to vomit, as you struggled to comprehend the enormity of possibly having to deal with this for another day, let alone forever.


Whilst it’s obviously very difficult for us, we see our families, friends and even our doctors struggling to comprehend it too. It often requires a total paradigm shift in how we view the world. 


The reaction to this required paradigm shift can be strange and unpredictable. For some around us, this shift is too scary and the response is denial or shaming, or simply disappearing to focus on easier relationships which don’t cause us to think uncomfortable thoughts about how the world works.


The people around us can get frustrated when the solutions don’t materialise and bored of being stuck constantly in the ‘problem’ phase of the story, never moving forward to the fun, exciting part where a solution is found and everyone rejoices. It’s like the most boring movie in the world! We know, because it might be frustrating and boring for the people who spectate from the sidelines of our illness, but that sure doesn’t compare to how boring, frustrating and exhausting it is for us.


It’s not your fault that people can react this way and it is no reflection on the reality of your condition. They are simply trying to protect their view of the world and are so attached to it that they would rather throw you under a metaphorical bus than consider the alternatives. It’s a protective mechanism which speaks to their inability to deal with complexity, uncertainty and shades of grey. It’s stupid, unfair, and irrational. But it’s also a normal human reaction because in all areas of life we tend to go to extraordinary lengths to protect our established world view.


In our culture we hide birth, death and illness away in hospitals, care homes and hospices. Allowing us to maintain a sanitised view of life and to protect ourselves from looking at random suffering, to insulate ourselves from the idea that illness and death could happen to us too.


The impact all of this is complex and far-reaching.  I used to spend quite a lot of time wondering what I did wrong to end up with a chronic condition. Was I being punished in some way for past behaviours? Did I deserve this on some level? Was I too proud, too ambitious? Like Icarus, flying too close to the sun. It took a while for me to notice that bad things are not shared out in a fair way.


Next, I moved on to shame. Feeling apologetic for not getting better. Was I not trying hard enough? Was it all in my head? I pretended to be ok at all costs, not letting anyone see a crack in the veneer. That’s what we do. We pretend to be fine. We become complicit in maintaining the narrative, lest we unsettle others. As one Spoonie friend observed, “We invest a lot of energy in pretending to be fine, to make life easier for others.”


There are consequences to battening down the hatches and locking the bad stuff down tight. The more tightly repressed emotions are, the more likely they are to explode out at inappropriate moments or eat us from the inside out. We need to find ways to let it all out.  Our health depends on it.  It’s also incredibly lonely to keep it all to yourself. There is nothing more isolating than living a lie, being inauthentic, never mentioning the elephant in the room, talking about the weather while your life is silently falling apart. 


We often feel intense shame for not getting better or for having a condition which science doesn’t understand all that well. My whole career (issues and crisis management) was based around being the one who could stay calm, and produce solutions to big, complicated problems quickly and consistently. It felt humiliating to be unable to produce a solution to the biggest and most important problem I’d ever faced. It took time to find some acceptance and to learn to approach this problem in a different way.


Fast forward nine years and thanks to variety of treatments and life changes, and lots of trial and error,  I’ve moved from bedbound to housebound to functional and I would now describe myself as broadly happy. But I still deal with issues every day. My condition moved from acute to chronic and it’s a transition to a ‘new normal’ that all of us in the Spoonie community have had to make.


Working my way through the stages of grief, I found counselling incredibly useful. An early insight was that it was ok for me to show weakness and not to always be the one with the solutions. The hugeness and the complexity of chronic conditions can make it really hard to share openly with others without feeling like you are dumping a metaphorical ton of manure on them. I ended up practicing a few concise sentences which enabled me to be truthful, but not feel like I’m whingeing. (I’m going to share more on how I engage with others positively around my Lyme disease in another blogpost).


But here is the really good news. All of this acts as an outstanding filter for the people you really want in your life. Eventually, I became more honest, less apologetic and accepted that certain friendships and relationships were going to fall away. Once I started to live more authentically again, some great people appeared in my life and remain there.


As soon as I started to view the reactions of others as being about them and not about me, life started to become easier once again. I stopped feeling annoyed with people for not getting it and accepted that when we have certain narratives rammed down our throats all day long, it’s not easy for some people to believe alternative stories. 


The other great news is that when you find those doctors, friends and family who are comfortable with your situation, they are generally people who think outside the box in all aspects of life and that makes them funny, bright, interesting to talk to, engaging and sometimes wonderfully eccentric. They are often the ones who are comfortable going their own way and unconcerned with what others think and they can support you to be like that too.


It takes guts and compassion to be confronted with someone else’s difficult reality. It takes grit to engage in it again and again. When you find a friend with these qualities, hold on to them and appreciate how precious they are.

The narrative is just that – a story that we want to believe, but like a story it’s often not true. It’s ok if your story doesn’t fit and you don’t need to apologise if it challenges others. It’s about them not you.


There is no need for shame. You are living with a chronic condition and deserve an Olympic medal for getting to the end of each day. It’s definitely not your fault. Random things happen, you aren’t being punished or sent a lesson. You can draw immense learnings from your situation when you are ready to, but that doesn’t mean that’s why it happened in the first place.


You are trying hard enough. At certain points you might feel more like trying than others. That’s ok, it’s a marathon not a sprint.


Your journey may not follow the route prescribed by society, but that doesn’t mean you should stand still. Feeling stuck, overwhelmed or out of ideas is common and understandable, but moving forward on your own individual journey is important, no matter what path it may take or how many steps you may need to get there.


If you’re ready to move forward in your life, find a coach. Coaches support you to take positive action and that can include factors such as diet and exercise , but also how you approach challenging relationships, self-care, working on limiting beliefs or even rehearsing for a medical appointment. The whole coaching process is about you, about supporting you wherever you want to go. We’re not just green juices and yoga. 


I do really like green juice, though….


I hope you’ve found this blog to be interesting, thought-provoking and/or useful. Please feel free to message me with your feedback and comments. Look for @chronictonic_wellbeing on IG, Chronic Tonic Health Coaching on Facebook, or email me chronictonicwellbeing@gmail.com