Our guest contributor this issue, Amy Clarkin, has lived with chronic illness for four and a half years. Here, she writes about how much of life in lockdown has long been her norm, that in some ways Covid-19 has made her feel the most ‘normal’ she has in a long time…
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I see it everywhere – on social media, in newspapers, in the messages to the group chat on WhatsApp – ‘When this is over…’
As the COVID-19 protocols were first brought in, this statement was buoyed up by the optimism that this would pass quickly. Social distancing measures were announced and the rallying calls went out ‘It’s just a few weeks! When this is over…’ Now it is May, and our enthusiastic optimism has been tempered by weeks of figures outlined in red on the front of the Irish Times. This will not be quick. It will be a slow, gradual shift back to a drastically altered world. But still we dream and plan ahead – of trips to coffee shops, summer evenings in beer gardens with friends, hugging a loved one, going to theatres and concerts and restaurants, being happily ensconced in a crowd of people and not frantically dodging across suburban roads when someone approaches from the other direction.
Dreaming of ‘when this is over’ gives us something to look forward to. It is a way to remind ourselves that life was not always the walls of our homes, anxious dashes through supermarkets and friends’ faces only seen on a computer screen, and it will be again.
For most of us, that is.
Dreaming of post-pandemic life feels bittersweet for me. I have a chronic illness, M.E., Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome. It has taken over four years for me to get to a point where I can leave my house for a few hours a day, where I can see people occasionally, and staying out until 10 o’clock is not only an achievement, but something that can take me days of resting to recover from. For me, the idea of this being fully ‘over’ seems like a far-off dream. Even when everyone else is free to go back out into the world, I will still be trapped in a body that does not work the same way other people’s do.
As Covid-19 spread across the world and people panicked about having to stay indoors, mourned cancelling plans and holidays and felt the frustration and anxiety of career fears, I noticed two types of reaction from the chronic illness community online: one a sage ‘come here and let us share our wisdom, we have been training for this moment this for years’, the other a wry ‘it’s only a few weeks, come back to us when it’s the rest of your life.’
I can understand the frustration. So many chronically ill people have experiences of being dismissed, ignored, belittled, forgotten, it’s hard to see people suddenly take all the things we’ve been saying for years seriously when it affects typically healthy people. The familiar phrase ‘oh you’re so lucky, I’d love to get to sit at home on the couch all day’ incites such a specific form of fury that I can understand the temptation to whisper ‘not so fun now, is it?’ It’s not enjoyable when it isn’t a choice. It’s not a pleasure when it’s at the expense of the rest of your life.
I can understand these responses – I have flashes of them myself – but I don’t think they’re helpful right now. This isn’t a competition. When it comes to illness, people often fall back on comparison – ‘oh at least it’s not x’ or ‘well y’s symptoms are worse’, the implication being that if someone else has tougher circumstances, you cannot possibly be justified in your own sadness, or fear, or anxiety. Now is not the time to argue over ‘who has it worse’ because this pandemic has affected so many people in different, traumatic ways.
I remember how utterly terrifying it was to have my entire life ripped from beneath me with no warning. I’m also aware of the privileges I have, the support systems I have access to that others do not. I know that I didn’t understand chronic illness until I was 25 and developed one myself. What we need now, more than ever, is empathy and solidarity. Gratitude and perspective play their parts, but even if you feel someone else ‘has it worse’, that doesn’t mean what you are going through isn’t also difficult.
(Can you tell I’ve spent a lot of time in therapy?)
I have lost count of the moments I’ve missed out on over the past few years. The memories I don’t even know I’ve lost because the mere possibility of them was eradicated long ago. I try to hide how left behind I feel but in truth I am often lonely, and when I attempt to think about my future I am scared. The world has changed a lot in the last four and a half years, and it feels like everyone around me has progressed. They have built careers and travelled and made mistakes and fallen in love or had their hearts broken. No one’s life is sunshine and roses all the time but I am still envious that they have lived their lives. They have had experiences while I sat at home on the couch, watching the things I couldn’t take part in play out on Instagram stories or in carefully curated post-event collages on my newsfeed. I try to keep my face impassive as my friends muse about ‘when was the last group photo we took?’ and feel the words building in my throat – I wasn’t there. I was too ill – swallowing them down while I wonder if they just automatically assume I was there, or if they’re so used to my absence it no longer counts.
Now everyone can only watch each other’s lives play out on a screen. Everyone’s existence has been drastically disrupted and suddenly I am the one with the experience in this department. A shameful part of me feels a thrill at getting to be like everyone else. I’m not happy that people are going through this –I’m not a monster. But I can feel the solidarity right now, am touched by the kindnesses people are extending to those around them and the sense of isolation that so often follows me has eased. I know this is temporary but for now suddenly it seems like everyone is at home doing yoga and crafts and baking and for the first time in years I feel like I belong.
There is also a chance that this situation will help a lot of people to begin to empathise with how living with a chronic illness can feel. We are all uncertain. We don’t know the details of Covid-19 or how to treat it. We don’t know when this will end, how people’s lives and careers will be affected by it. There are no certainties. We wake up every morning knowing it will be both the same as the day before and that everything could drastically shift under our feet yet again.
That is how it can feel to have a chronic illness. Or at least it is my experience of it – chronic illnesses are varied beings, and even within diagnoses people’s symptoms and experiences vary differently. A unifying aspect is, I think, that it is a frightening thing to experience. A dual experience of perpetual monotony and constant precariousness.
There are still reminders that this (thankfully) is not permanent, that my health makes me forgotten by some or even less than in the eyes of others. In the beginning stages of the spread of Covid-19, I constantly saw people reassure others with ‘It’s only the elderly or people with pre-existing conditions that are at risk. It’s fine.’ Strange, isn’t it, how powerful such a small word can be? ‘Only’. It’s only the elderly and those with pre-existing conditions at risk of death. Of severe complications. As though we are a disposable demographic, our lives worth less than the people around us.
Only.
As the virus spread and it became clear it did not discriminate based on age or current health, suddenly all the measures disabled and chronically ill people had been fighting for, pleading for, for years, began to slot into place. The ones like working from home or distance learning in schools and universities. Things that companies and institutions told us were too complicated or not feasible so they could not hire us or let us take part in that particular course. In a matter of days the systems were in place and we were watching all of this unroll with hope and sinking hearts. The message felt clear: It’s not that it wasn’t possible. We just weren’t seen as a valuable enough demographic to invest in.
The innovation people are displaying during the pandemic is incredible. Online literary talks, museum tours, online classroom forums, video parties via twitter, Zoom quizzes, the list goes on. I completely agree that a computer screen can’t fully replicate the atmosphere of being there, of physical interaction, but if the choice is between not getting to do these things at all or doing them via computer, it’s clear that most people will choose the virtual experience. Ironically, in a time where many are understandably feeling confined and as though their lives have been curtailed, I’ve seen many chronically ill and disabled individuals say they are currently able to ‘attend’ more events, classes and activities than ever before. It is strange that in a time of massive global upheaval this is, in some ways, the most ‘normal’ I’ve felt in a long time.
I still can’t always join in because of my health but I am able to do more than I was. It is the closest I have felt to being like everyone else in over four years. Now I look around and realise that this could easily be pulled away again, know there is a chance that companies will say it was ‘only temporary’ and ‘not a long term possibility’ but what that really means is that they’re not willing to try or put in the work to create or maintain these systems unless they have to. At the moment the measures are in place and deep in my heart I am hopeful that they will stay.
The Irish Times reported on 1 May that over 60 per cent of Irish companies are looking into how to continue working from home protocols for people who would benefit from them. This strengthens the prospect that now that they know it’s possible, these systems could be kept in place. Perhaps some kernel of good is going to come from this global nightmare, by opening doors to the accessibility we have been dreaming of. ‘Or’, a voice whispers in my ear, ‘will we get to see this glorious snapshot of what is possible, only to have the door slammed in our faces when it no longer affects the majority?’ The dread of this settles like a boulder in the pit of my stomach.
Will we once again be told that it’s not possible even though we now know for a for a fact it is? When we say the world will go back to the way it was when this is over, does that include locking those of us who can’t work a typical nine-to-five, or physically attend an exhibition or play or talk back out in the cold? Will festivals now explore the idea of either streaming or recording their events so that people who cannot physically attend – for health, economical or geographical reasons – can still join in? Not only would that open events to a broad number of people, but it could be an extra revenue stream for festivals. So often it can feel as though accessibility is an afterthought or you are viewed as a nuisance for asking for accommodations. There are many who go above and beyond, but there are others who seem to forget that we are people too – with so much to offer.
The need for flexible work hours because of a fluctuating condition can be seen as an indicator of unreliability, when if anything the last four years of illness have taught me a broad range of skills. Only having an average of four hours of energy a day to do everything from write to shower to go to medical appointments and run errands makes you a meticulous forward planner. Illness, simultaneously, makes you highly adaptable; when you have no idea how you are going to feel on any given day, you learn to make the most of the good ones and bend with the bad. We may need to work in different ways, but we have so much to contribute if given the opportunity.
M.E. is classified as an invisible illness, an illness where the person has no visible markers of illness, but is – often severely – unwell. What they don’t include in that definition is that It can often make you feel like you are invisible. A ghost, haunting the edges of the life you used to live. It’s hard not to feel slightly heartbroken seeing people talk about ‘when this is over’ when I know the effects will linger for those of us who are high risk for much longer. Even when I finally feel safe interacting with people again, it will still be to the limits of my chronic illness – a few hours a day. Yet I see people working from home and feel a little surge of optimism for the future – maybe I will be able to do that one day too. Returning to work even part- time is a key goal of mine, and the prospect of flexible work hours and working from home makes my dream feel just that bit more tangible.
We have a roadmap now. A neat chart, colour coded and broken into five phases, starting from 18 May, though the government are quick to remind us how subject it is to change. How a resurgence in virus numbers will lead to a rolling back of the freedoms gradually awarded to us. If it goes to plan, phase five will begin in August. Now people can pin their dreams of late summer pints on a specific date. It’s comforting to have even a tentative finish line to look forward to – albeit a tenuous one. So much can shift between now and then. We can strategise but if the virus derails it there is nothing we can do. That is how living with chronic illness feels – you plan, you hope, you do everything you can to moderate its effects but if your illness decides to flare, that’s it. We often can’t regulate a chronic illness any more than we can control Covid-19. We will do what we can, stay two metres away from one another, wash our hands, follow guidelines on face masks, but ultimately there is nothing guaranteed to work that we can do until we have a vaccine.
That realisation can be overwhelming. No one wants to feel powerless. It’s hard knowing that your future is reliant on other people – scientists to create a cure, the public to adhere to social distancing, a company to decide to accommodate your health needs, or an event to consider you when choosing venues, formats and timetables.
So please, when the dust settles and you go back to your lives and you talk about the great lockdown-that-isn’t-a-lockdown of 2020, think of those of us who, even without the threat of a pandemic, are housebound or limited in our day to day lives because of illness or disability.
You know how it feels right now. And if this pandemic has shown anything, it is how deeply kindness, empathy and solidarity are rooted in our society. I hope this virus is defeated quickly. I hope it does not affect you, or anyone that you care about. I hope that we can look back and say we dealt with it effectively, with consideration, kindness and proactiveness. If any good is to come from this, perhaps it is that the understanding, the rallying around the vulnerable in society, the new structures allowing people to work remotely, to access spaces they couldn’t otherwise, can be continued.
And I hope, when this is over, you remember us.
Photos by Amy Clarkin, Alex Ivashenko and Daria Nepriakhina on Unsplash
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