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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.