For most of us, lockdown life will pass. But for some, there is no “getting back to normal”

As we battle with lockdown fatigue, I remember that those who live with disability or chronic illness always operate within such restrictions.

By Tracey Thorn

We’re all very tired aren’t we? Who knew a pandemic could be so exhausting? I don’t mean to be flippant; I think it has come as a shock to us, the fatigue engendered by being locked down for so long. What began as a state of emergency – all heightened emotions, anxiety, adrenaline and alarm – has settled into a weary numbness, a dialling down of our responses, so that many of us find we now can’t even properly embrace hope, can’t react fully to either bad or good news.

Perhaps we’re being self-protective in our pessimism about there being an end in sight. We wince at new government promises and targets, as though we have built up a shell around ourselves, wary of being wounded again. I look back at where we were a year ago, and how we spoke then of patience and endurance, and I think, Ha! You don’t know anything yet, just you wait.

And while the majority of us chafe against the rules and limitations, and talk about how much we long to “get back to normal”, I find I think more and more about people for whom this is normal; those who live with disability, or chronic illness, and who operate within such restrictions all the time.

One such is Josie George, who has just published a memoir about her experience of long-term ill health. A Still Life was completed before coronavirus arrived and yet it describes a way of living now familiar to many of us. “There have always been long years when I’ve struggled to leave my house for more than an hour or two at a time and so I am used to solitude,” she writes, almost nonchalantly, putting into perspective our outrage at the year we have just endured.

Writing as a 36-year-old, George has been intermittently unwell since childhood, doctors unable to diagnose the cause of her crippling pain and fatigue, dropping acronyms and initialisms around her – POTS, ME, CFS, FND – like tantalising clues, none of which ever quite solve the mystery of what is wrong. In the midst of all this, instead of waiting for resolution, she has to make a life worth living.

“I focus hard on the things I can control, however small; I focus on the world around me, on living and living and living. I make a good, rich life; I avoid questions; I let go of the rest. What else is there to do?” Many of us found that lockdown sharpened our vision, intensified our attention to the small and the close at hand, and that feeling is echoed here, too – “I notice everything, and I am hungry for everything”.

These are the good days. In bad moments her frustration is overwhelming, and she doesn’t pretend otherwise. “Some days, I get so angry, I want to throw my life at the wall.” There is bravery here, but not martyrdom, not sanctimony. She is a real person, broken and yet whole, flawed and yet entire.

Through the years, she has periods of recovery, but then falls sick again, unable to walk, or to work, forced against her will into inactivity. And it’s not a drama, it’s a monotony: “Perhaps that is why there are no stories told like this, of the roll of predictable, ordinary chronic illness, round and round again. It is so easy to be boring.”

She is not boring though, and nor is her book. I won’t say we could all learn from her – that would be too prescriptive, and I think she would hate to be seen as some kind of life guide or example-setter. She’s too honest about all the times in her life she feels she has failed. But still, there is something inspiring here, in these reflections on the nature of existence. How fragile we are, she notes, how fleeting our joys. “None of us is free: we’re all in a cage, each one of us hurting and wanting, each one of us afraid of loss and pain.”

Reading it, I thought throughout of the term “underlying conditions”, which none of us had ever used before this year, but which became, for some, a way of dismissing those who died of Covid, a way of blaming them for not being healthy enough to shrug off this new virus. Josie George is full of “underlying conditions”. So are an awful lot of us.

Being alive is an underlying condition. Being human.