health

The true pandemic experts: "They know how it feels to be confined within four immovable walls."

Two weeks into the global pandemic lockdown of 2020, my news feed was swamped with 'expert' advice on how to cope with being trapped at home for the unforeseeable future. 

Everyone from garden gurus to fitness club managers had a 'survival guide' bursting with top tips. Leisurewear must-haves, Zoom cocktail hours, TikTok dances and gratitude journals were common themes while social media influencers sheltering in place, filmed banana bread tutorials on repeat.

But never once in all these numerous conversations, articles, podcasts or Instagram posts, did I hear from the one demographic who was probably most equipped to handle such uncertain and socially distanced times as these.

People in the house-bound, Chronic Illness Community, are the real experts here. They know exactly what it’s like to have a life ripped away. They know how it feels to be confined within four immovable walls and go without hugs and human contact for months, years and even decades. 

Not being able to go places they want to go, do things they want to do, missing out on every birthday, wedding and Christmas while carrying the anxiety of an unknown future, is an average, groundhog day for them. 

Many in this community, struggle to access basics like food, healthcare and support services and have lost their own independence, well-earned careers and seen their friends and closest confidants turn their backs and leave.

They know how to do really hard things, because they’ve done them over and over again. They understand what true resilience is and the courage it takes to fight back from rock bottom. They’ve learned how to keep going, search for solutions, look for silver linings, navigate loneliness and gather up reasons to be thankful even under the most difficult of circumstances. 

For too long, this community of people has been invisible. They’ve repeatedly fallen through the cracks.

Like Sam in Sydney, confined to her home for almost a decade due to illness. She’s had only two visitors in the last two years, her carer and occasionally her daughter. Sam dedicates her time to moderating a Facebook group offering practical assistance and words of encouragement to others in similar situations. Or Bianca from Melbourne, who’s faced difficulty accessing healthcare services during her seven years at home. She’s happy that COVID brought temporary changes to Telehealth laws so that she can finally speak to a doctor by phone. But what will happen to Bianca when those temporary amendments to Telehealth laws end?

Listen to The Undone's Lucy Neville talk about dating with a chronic illness. Post continues below. 

Individuals like Sam and Bianca have only ever wanted equal opportunity and for other people to try to understand what they go through. Instead, they’ve repeatedly heard things like...  "You’re so lucky to be at home all day!"

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So when the global pandemic lockdown of 2020 began, I immediately wondered if the ever-growing list of individual and business restrictions and unexpected loss of daily freedoms, would give everyday people a glimpse into the lives of those of the house-bound long haulers.

But as time rolled on, the house-bound, Chronic Illness Community, a rich resource of all kinds of wisdom, insight and firsthand experience with how-to-survive the lengthiest of lockdowns, were being overlooked and excluded once again. No one was asking them for their advice.

So if you’ve found the last 12 months a struggle, I want you to know there’s a whole community of people who know exactly how that feels. 

So go to them. Ask them. Interview them. Learn from them. Because this community has a deep-in-the trenches expertise that you and everyone can draw upon... especially now. 

They were made for times like these.

For more from Amelia Hill, you can visit her website www.ameliahill.com or follow her on Instagram @amazingameliahill

Feature Image: Getty.

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