THOSE strange, incongruous terms that now guide our movements – social distancing, self-isolating – are not as alien as we once might have thought.

Ask anyone with a chronic illness and you soon realise that their everyday experience is rooted in these previously unfamiliar words, which sound like waymarkers from another world.

Here are people who navigate their lives, largely unnoticed; who hold a map to this often perplexing world we presently inhabit, and we need to listen to them.

The Lyme disease patients who are the focus of my research lead lives dictated by their immune systems – where they go, who they meet, when they return. So, when Covid-19 struck, I expected it to dominate discussions in Lyme disease circles but, to my surprise, it didn’t. Online forums continued as usual: research news being swapped, supportive stories being shared. Mentions of coronavirus trickled in but, most of the time, my study participants had other things on their mind. There was none of the alarm I was experiencing elsewhere.

Speaking to one of my participants about the pandemic, Pauline replied: “It will work itself out. Life goes on.” No matter which angle I tested, she resisted any notion of panic. Instead, she was calming those around her: “I tell people who panic, ‘there’s nothing you can do about it,’ because I think the stress makes them worse.”

Pauline’s words hit home. Anxiety and fear are familiar emotions to her and, like many Lyme disease patients, she’d spent years allowing their grip over her mental and physical health to tighten. Hers is an experience familiar to many. There are over 3000 reported cases of Lyme disease – a bacterial infection carried by ticks – each year in the UK, but advocates argue due to misdiagnosis and under-reporting that the number is much higher.

Lyme disease patient and advocate Alice prepared for lockdown one month before it was declared nationwide. She concurs: “I don’t feel too much out of depth. I’ve been terrified for 13 years and I’m not getting any more terrified.” Morven-May MacCallum, author of a book based on her experiences, agrees: “When you have Lyme disease, you live with death for so long, it becomes normal.”

As coronavirus sweeps the planet, what may be a frightening state of pandemic is, to those who living with a chronic illness, a continued state of normality. To them, this new world ruled by stockpiling, isolation and social distancing is a familiar one. This is the level of anxiety they have been living with for years.

“This is what we’re good at,” says Morven-May. “We know to buy our medication in advance; how to avoid germs, and people. Now everyone is entering our world – before, we were trying to enter theirs.”

For those of us entering this new world, there’s great comfort knowing it is already inhabited. My study participants’ experiences now sound all-too familiar – changing from being active to being house-bound; confining big lives into small spaces – but there are grounds for optimism.

Given that digital platforms make contact easy, Alice suggests the term “social distancing” is inaccurate and could even make us feel more anxious. “We might become closer in many ways,” she says. “Make every attempt to try and maintain social interaction even if you’re physically isolated.”

Both Morven-May and Alice recall the pressures they felt on their mental health. “For each person, self-isolation will bring out different things,” Morven-May admits. “Some people will become claustrophobic, irritable, retract into themselves. They won’t want human company.”

Alice also cautions about a possible loss of self-esteem: “If you’ve lost your ability to work, the esteem that comes from that might dissipate. People will start to question themselves so take steps to avoid this.” To this end, Morven-May recommends laughing to combat the anxiety and honoring simple comforts: “One thing that made a difference to me when I was really unwell was to get a chair, sit by the window. Open it and just breathe in fresh air. People need to look for those little luxuries.”

However long this takes and however different the world will be when we come out on the other side, Morven-May’s words ring true: “Maybe it’s a moment for people to have more empathy with those who are trapped inside their homes more permanently.”

Ritti Soncco
Twitter: @rittisoncco

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