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Lessons from a Chronic Illness Warrior for COVID-19 Isolation

Margeaux Feldman wrote earlier this week that the working poor are the experts we should turn to — and compensate — as thought leaders in the midst of this crisis.

With thousands of people currently out of work and unsure how to survive on low or missed paycheques, the people who have always lived their lives this way are undoubtedly the experts we need!

I would also propose another group of experts to guide us through the coming months —the chronically ill.

(It is worth noting that there is a large overlap in these groups, as people facing chronic illness are often also chronically under- or un-employed.)

Technically, I fall in both categories. I have spent most of my adult life under- or un-employed. Actually, the last few weeks have been the first in nearly 5 years that I've been able to work 30 hour weeks.

And I am chronically ill.

It actually took all my friends and peers posting about self-isolation for me to really understand how much of my identity has been shaped by my illness. I am definitely a person with a serious chronic illness.

But, for myself, the most jarring part of the last week and a half hasn't been the panic or the isolation — it's how normal this all feels to me and by contrast how abnormal it seems to everyone else.

It has been eye-opening to realize the wide gulf between what I had taken for granted as 'normal', and what I'm realizing 'normal' is for someone who doesn't live with a chronic illness.

It is normal for me to suddenly lose my income indefinitely. And it is only by grace of my family and our privileges that I have comfortably survived that.

It is normal for me to not know what the next weeks, months, or even years are going to hold; that has been the experience of my entire adult life.

It is normal for me to be confined to my apartment indefinitely. In fact, this is the most comfortable isolation period I've ever had (so long as my medication continues being delivered).

So, as an expert on indefinite periods of unemployment and isolation, here are a few big thoughts you might come up against over the next few weeks.

Some of our greatest minds have used isolation as a way to learn about themselves and the world. It is no small thing that we are collectively being forced to sit down, reassess, and learn a little about ourselves and the world.

1. What We Can Learn About Control

We all want to feel like we're in control of our lives, but I've got a secret for you about control…

You've never had it. Trying to maintain control is like walking an ever-narrowing tightrope; your fall is inevitable.

You've always been one injury, illness, tragedy, or misstep from this place.

You just didn't know it yet.

Life rarely, if ever, goes as expected. The sooner you surrender to the unexpected, the sooner you can start to reframe your life.

Anyone who has suffered loss, processed grief, or lived through a major illness is an expert on surrender. Because once you realize you're not in control, surrender is the only option.

It's okay to be terrified or angry while you let go of your attachments to expectation and control. Letting go is almost always a messy process.

But eventually, if you let yourself go quiet for a little bit, like the sleep after a long cry, the fear and anger will subside. From that place of quiet you can start to piece out the bits you're in control of.

Those bits include: how you react to fear and anger, your perceptions of yourself and others, your emotional landscape (to an extent), how often and passionately you tell your loved ones you value them, honesty, integrity, personal values… basically, the only place control can live is inside you. (Although I would caution against trying to over-control your emotions or body; that is also pathological.)

Hank Green does a great job of explaining this shift in his video The Sudden Obliteration of Expectation. It is worth watching all the way to the end to understand what finding a "new normal" takes.

2.What We Can Learn About Vulnerability

Resistance to vulnerability has shown up in multiple ways in this crisis.

The most insidious manifestation being a cultural attitude of "it won't get me," despite expert warnings to the contrary. Conversations (online and in the real world) leading up to sweeping quarantine measures have been peppered with the same denial and shrugging off of responsibility I see in conversations about climate catastrophe.

We are resistant to vulnerability in any form. Slowing down or stepping away is seen as weakness. Our patriarchal system doubly burdens men, as any form of self care or softness is condemned as a failing of masculinity.

On a cultural level, we must allow ourselves to be vulnerable.

Holding space for vulnerability also means holding space for phrases like, "I don't know," "I need some time to figure it out," and "I think it's safer if we all stay home."

These phrases that have been essential in stemming the tide of this pandemic.

On a more personal level, vulnerability is just plain essential for survival.

Job losses, overwhelming feelings of scarcity, and uncertainty about the future have left us all with some pretty big vulnerabilities (some more than others).

The only way to survive this in one piece is to lean into those vulnerabilities, and to ask for help.

I've relied on help most of my adult life for things like groceries and rides to doctors appointments.

Accepting that help never really gets easier, but it becomes a new normal.

The feelings of guilt, obligation, and the nagging question of how helping debts can be repaid come up often. The only solution is to turn and help in kind.

Maybe your gift of help will look different — emotional support instead of physical, or turning and offering aid to someone more vulnerable than you — but it is a gift nonetheless.

The circle of help goes around and around, and we all must be ready to both give and receive.

3.What We Can Learn About Privilege

I know, I know, everyone hates the P-word.

But if I can make you understand anything about privilege it is how pervasive and invisible it is.

You see, I have always understood that people with certain privileges are often ignorant of them, but what I didn't understand until just this week is that the opposite is also true.

I have lived my whole life with chronic illness complications. My life has always felt really normal to me. (Maybe with the odd dark period where the "why me"s got the best of me, but otherwise pretty normal.)

And then the COVID-19 ripped that notion wide open.

I didn't realize I was without certain health privileges until it was reflected back to me over the past week and a half.

Suddenly, why 52% of white women would vote for Trump is comprehensible; they don't understand that they are living without the privileges that their male peers have, the same way they don't understand the privileges they are living with that others don't have.

Privilege is invisible, whichever side of the fence you're looking at it from. In this time of crisis and scarcity we need to be tearing fences down, not building them taller.

4.What We Can Learn About Slow Living

Did the world end when capitalism was put on hold?

For those of us who are under- or un-employed, yes, the world is not the same as it was a week ago.

The best minds of our time have been calling for sweeping system change for many years already. But now more than ever solutions like a universal basic income and increased taxation of the wealthiest members of the population are essential. Studies show again and again that scarcity is manufactured by human greed, and that better systems could save millions from poverty, homelessness, hunger, and wage serfdom.

I understand, staring down a long stretch of unpaid time is nauseatingly stressful. Many lives will be permanently changed by this period of isolation and joblessness.

But the world doesn't stop just because capitalism does.

If your family is safe and healthy, take a deep breath.

If you're not facing homelessness or starvation in the coming months, take a deep breath.

If you have been able to use this time to cultivate new hobbies or revisit old ones, take a deep breath.

Your life did not end when the wheel of capitalism stopped; changed, definitely, but did not end.

In fact, alternative economies and solutions have already rushed in to fill some of the gaps.

In a few short days people have created 'caremongering' pages, trading systems, sharing and bartering options, and communities are practicing incredible acts of small business solidarity.

I have to ask myself, why is this exceptional? If we can so easily turn our attention to sharing and investing in a local economy, why have we been doing anything else?

The Slow Lifestyle Movement is largely built on the idea that all the things you need (emotional, physical, or otherwise) can be found in your community.

And that it is always worthwhile to look to your community first.

There's a good chance that the social and economic effects of this month will be felt for years to come. We have the unique opportunity to make some those effects positive ones. Maybe not on a global scale, but in our communities in deep and meaningful ways.

We can commit to asking our community before rushing to a big box store; we can commit to accepting help graciously; we can plant gardens and build new infrastructure right where we are.

We can all decide that this slow pace should feel normal, and commit to living slow when the wheel of capitalism ramps up to full speed once again (as I'm sure it will).

And the effects of that — socially and economically — will be enormous.

5.What We Can Learn About the Beauty of It All

What I can tell you, with the certainty of someone who has been here before, is that there is an end to this.

You will not be the same.

The world will not be the same.

But a new normal will emerge from this period of isolation.

You will go back to work, and you will be more inspired and motivated than you were before.

You will meet your friends for coffee, and it will be more delightful than it ever has been.

You will hug your friends and family tighter, and tell them more emphatically what they mean to you.

You will have playdates and nights out, and they will be beautiful in ways you never stopped to notice before.

Crisis is always clarifying. Knowing with certainty all you stand to lose has a special way of clarifying what matters — and what matters is a shorter list than you might think.

When this is over you will not be the same, and the world will not be the same. But you will know more than ever what is important to you.

As someone who has done this before, I want you to know that you will also be stronger in ways you never could have imagined.

You will be more resilient and creative.

You will know the pace of slowness and the gifts of vulnerability.

And if you're really lucky, your community will too.

I'll see you all on the other side of this mess.

Sending you all the love + gratitude,


P.S. If this resonated with you, I am writing a PAY WHAT YOU CAN Coffee Break ECourse that you might like. You can join the waitlist here.

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