Coronavirus & chronic illness: my reflections

If someone had told me just a few months ago that I’d be writing a post in the midst of a pandemic-induced national lockdown, it would have felt unbelievable! Sometimes when I reflect on the situation it feels like a dream, but on the plus side, coronavirus has given me cause for reflection.

I have come to the conclusion that I am probably at a higher risk of serious illness and death from COVID-19 than most, because my immune system has been ramped up for years and is permanently on high-alert. I have learned over the last 12 months (through self-education and experimentation) that I am Th1-dominant. Th1 and Th2 are two arms of the immune system that should be finely balanced – both play important roles, but the pendulum can swing too far one way and cause all kinds of problems. When I take anything that stimulates the Th2 pathway, I feel better, and when I take Th1 stimulants I get much, much worse. Apparently Th1 dominance is very common in long-term Lyme infections (I highly recommend Stephen Buhner’s book Healing Lyme for anyone who is interested in learning about this).

Having overzealous Th1 immunity means that when I do get transient infections like colds or the flu, I tend to get it quite severely, because my immune system goes overboard. Research seems to suggest this is the mechanism leading to organ damage in some people infected with COVID-19. But yet, with no “recognised” condition like diabetes or heart disease, I am not officially classed as a vulnerable person, and there is much uncertainty about just how vulnerable people like me are.

Nonetheless, in many respects, chronic illness actually gives me an edge on this. I have been forced to learn many skills that, while deeply painful to learn at the time, are now allowing me to deal with the pandemic with ease and peace. For starters, I am an absolute whizz at social isolation. Last year, despite being in the final year of my PhD and looking (I think) like a normal person who had a good grip on life, I calculated that I spent roughly 1/4 of the year housebound, and much, much more time leaving the house only for very brief periods of time. I have had to get used to not being able to go places or do the things I’d really like to do. Before I had health issues, I was always on the go. The gym brought me joy like no other, and I loved to run. But over the last few years I have had to learn to make peace with a much simpler life. Crochet, reading, and watching TV are my hobbies these days, and it turns out these come in very handy when there’s a national lockdown.

I have learned how to deal with uncertainty and unpredictability. Not knowing what tomorrow will look like. Not knowing if I’ll be able to go on that holiday we’ve booked for the summer. Not knowing when I’ll next see my friends and family. Not knowing how much work I will be able to get done tomorrow. Uncertainty is, for me, one of the hardest things about having a complex chronic condition because it means there is always the chance that planned activities will have to be cancelled, and that is universally devastating. But it has taught me how to be flexible and take each day as it comes, never expecting anything from the future.

I have also learned how to manage the thoughts in my head, even in the midst of deeply troubling times, which turns out to be a very helpful life-skill. A couple of years ago I did a “brain retraining” programme for chronic illness called the Gupta programme. The two main aims of the programme are (1) to learn to calm the nervous system through techniques like meditation and breathwork, and (2) to retrain the brain to focus attention away from everything related to chronic illness (which keeps you in a constant state of fight-or-flight and is not conducive to good health).

The Gupta programme was, without doubt, the hardest healthcare intervention I have ever tried. The brain really is a creature of habit, and until then I hadn’t realised just how all-consuming the thoughts and fears about my health had become. In the early days of using the programme I found myself practising the techniques hundreds of times a day, such was the extent of my illness-related thoughts (think: scanning the body for symptoms, worrying whether doing xyz will make me more ill, worrying about the future, wondering if I will ever recover, etc etc). But after several months of daily practice I found that I was able to gain control over my mind and stop those fear-inducing thoughts before they had a chance to take hold. That skill has come in very handy with COVID-19. After the initial few days of anxiety when the pandemic first came to light, I was able to recognise my anxiety for what it was and within one afternoon I had regained control. The Gupta programme taught me that, while it is hard to change your mindset, it is never impossible. I now know that no matter how deep my anxiety or negativity, I have the power to change it. And that, too, is pretty helpful in the midst of a pandemic.

The other thing I have noticed is that a national lockdown is, in many ways, very beneficial for those of us with chronic illness. I have long known that the more day-to-day “stuff” I do, the more ill I become. Each day, therefore, requires impossible decisions about priorities. Is going into the office for a meeting more or less important than being able to cook dinner? Is spending the evening with a friend worth waking up tomorrow feeling even more ill than today? Over the past few years I have found it increasingly difficult to keep up a “normal” life. I am, of course, very lucky compared to many people with chronic illness for whom any kind of normal life is impossible and who are completely unable to work, see people, or even get out of bed each day. But increasingly just keeping up with the essential tasks of life feels like wading through treacle. I have posted in the past about this. I essentially have the to-do list of a healthy person, with only a fraction of the time available to do it in.

But now, no-one is able to do those things. Everyone is housebound. No-one is going out and about, checking off all their to-dos or to-wants, or seeing people, and so there is no expectation for me to do those things either. I am able to avoid the time and energy involved in going into the office and instead work from home. Even just one day in the office is suprisingly tiring and symptom-inducing during bad patches of health. I can’t go to yoga or to a friend’s house or to that family meal; there is nowhere for me to go in my spare time and so I don’t have to make any of the usually impossible decisions about priorities. Finally, the world has slowed down to a pace I can keep up with. I no longer feel like I am playing a never-ending game of catch-up with the rest of the world. In many ways, I wish it could stay this way forever. Of course things will eventually return to normal but, for now, I am relishing the respite that comes with a slower pace of life, and I am eternally thankful for the lessons I have learned from chronic illness.

What chronic illness looks like behind closed doors

Many chronic illnesses are described as “invisible illnesses.” Depression, anxiety, chronic fatigue syndrome, Lyme disease, fibromyalgia, autoimmune disease… they all have one thing in common: most of their symptoms are invisible to outsiders.

Like many others with chronic illness, I have become very good at hiding how I really feel. Since I don’t generally walk around with a sign saying, “I have chronic illness,” my friends, family, colleagues and acquaintances (and that miserable lady in the post office who makes me want to cry on a bad day), would be forgiven for thinking I’m perfectly healthy.

Before I got sick, I think I’d have found this concept hard to understand. I’d have assumed that no one could possibly hide how they’re really feeling all the time, and that I’d notice if someone was really that ill. Now, of course, I know different.

When my sickness level is a nine or ten out of 10, I stay at home. I call in sick from work or work from home, I cancel my social plans, and I skip my yoga class. No one sees the really sick version of me. Well, no one except my parents and my boyfriend (lucky them).

When my sickness level is a seven or eight out of 10, I do minimal activities. I might head into the office for a few hours and leave at lunchtime. I might pop to the shop. But that’s about it. I’m likely to do these things with plenty of painkillers, and I’ll avoid speaking to anyone. If I seem quiet or grumpy or stressed, it’s probably just that I’m having a seven or eight kind of day, and I am just about able to make it to the office but I feel too sick for conversation.

When I’m at a five or six sickness level, I’ll do most of my usual activities. I’ll do a whole day at work, I’ll meet my friends for coffee if we’ve made prior arrangements. I do these things feeling very tired, and a little fluey, but it’s manageable and I’m normally able to hold a conversation and keep a smile on my face. Anything below a five on the sickness level is rare, but on the occasional level two/three/four days, I’ll be on top of the world! I’ll be the first one in the office and the last one to leave, I’ll be joking and laughing and making conversation. I’ll be at yoga and then I’ll meet a friend for dinner. I’ll be, for all intents and purposes, normal.

So if you see me and you think I look quite healthy, either it’s a particularly good day, or it is a moderately good day and I am just about holding it together. The true sick version of me rarely shows her face, and if I did, I really think my friends and colleagues would be horrified.

So what does chronic illness really look like? On those days when I wake up and can barely make it out of bed, or when I walk through the front door after a whole day spent in the office wondering how on earth I’m going to make it til 5 p.m… What does it look like, behind closed doors?

There are normally pyjamas, dressing gowns and blankets involved. I will often have my head in my mobile phone or on my laptop, researching this illness, trying to find the right balance of self-educating without causing panic and upset. There will be no makeup, no brushed hair, no nice clothes. There are lots of cups of tea. There may be a nice dinner if I feel able to make something, or if my boyfriend is around to cook, otherwise, there will be takeaway or leftovers or whatever scraps I can find in the fridge. There are few smiles, few jokes, few memories to be made. There are tears. Sometimes there are a couple of tears that can be wiped away and pushed to one side. Sometimes there are inconsolable sobs as the enormity of how terrible I feel and how tired I am of feeling terrible, comes to the forefront.

Behind closed doors, chronic illness is ugly. It is unwashed, undressed, it is grubby. It is lonely and isolating. It is both stressful and boring at the same time. Sometimes I feel like a fraud for writing about how hard chronic illness is, about how sick I feel, because I know that for anyone looking from the outside in, I look like a normal, happy, healthy young woman. Please know that I hide the truth. Please know that looks can be deceiving. Please know that behind closed doors, chronic illness really is an ugly old beast.

 

Originally published on The Mighty:

https://themighty.com/2017/03/what-living-invisible-illness-is-like-what-people-dont-know/