Pandemic Lessons from Chronic Illness

A month ago, I had plans to be in Sedona. I was nervous about the trip – a lot was riding on it. I had a week to figure out whether the pain-free days I had in the Nevada desert were a fluke, or if my body really did respond to hot, dry climates. If the former, life in Chicago would continue as planned. If the latter, my husband and I were going to reconsider life as we knew it and look into how we could best support my health.

The trip to Sedona was a game-changer, but fresh from my Goth Vegas adventure, I was full of joie de vivre and ready to rock the world.

And then Covid-19 hit North America, and everyone’s plans changed, whether they wanted them to or not. You’re living what this means, so I don’t need to tell you how much has closed and changed. We didn’t invite the pandemic into our lives, and now we’re all finding new ways to move forward.

Chicago has only been under official “stay home” orders since Saturday, March 21^st, but I’ve been home since the 15^th because my body doesn’t fight off illnesses the way it should.

I would never, ever call any of my chronic illnesses a blessing, but the experiences I’ve had (and continue to have) with them has afforded me a singular education. At this point -- eight years of constant illness and nine active diagnoses since I left my “normal” life behind -- I’ve had a lot of practice facing scary medical unknowns. In many ways, this has made adjusting to the pandemic easier.

When you have a chronic illness, you move through the world in self-protective ways: handwashing and safe space are daily necessities; your friends know to cancel plans with you if they’re sick; you don’t touch surfaces with your bare hand; you wear a face mask when you travel. Honestly, when the pandemic first began, I felt safer health-wise than I had in a long time, because it was like everyone suddenly shared my germ-phobic awareness. Everyone was self-protective, respectful and careful. What’s new to most people is common practice for the chronically ill, which means Covid-19 didn’t throw us into the same steep learning curve. We know this unfortunate dance already.

But living with a chronic illness involves more changes than adding health-conscious habits. Perhaps the most important and regrettable lesson being sick imparts is how to emotionally balance the scary unknowns and to keep going when you have no control over what’s happening. Whether you’re learning how to stay sane and trust your experiences while doctor after doctor fails to diagnose you, or whether you’re forced to decide between two terrible, life-damaging treatment options because they’re your best chance at slowing your illness’s progression, chronic illness means fear and uncertainty are your most constant companions. You sort-of remember life before your illness and wonder if those worry-free days will ever be yours again.

Does this sound familiar? Just as the school of being sick demands your constant attention, Covid-19 has hijacked our lives and turned all we know on its head. Chronic illness does the same, often with threats to our social, financial, and emotional well-being. So here are a few of my most valued coping mechanisms:

1)    Even when your world falls apart, you need a routine. It doesn’t have to be elaborate, complicated, or exciting. You only need to have habits that you do every day – habits you can choose to do most every day without a problem. This might mean you wake up at the same time each day, or you start your day with a cup of tea and quietly sit for five minutes on your chesterfield (for non-Canadians, chesterfield = couch). It doesn’t have to be big. What you’re creating is a touchstone, an act of consistency and normalcy you can hold onto even when the world spins out of orbit.

I start every morning by eating breakfast and writing three longhand pages every day. I do this before I do anything else. If you’re not familiar with the Morning Pages practice, I highly recommend becoming acquainted. Morning Pages give you the opportunity to get all your worries, concerns, to-do lists, dreams, plans – whatever is cluttering your head at the start of your day – onto a sheet of paper so you can move through the rest of the day with clarity, purpose, and peace. Whatever you choose, do it every day. If you keep your habits, they will keep you.

2)    On days when I can’t get my worries out of my head, I create a Worry Sheet. If you want your worries to go away, I highly recommend this practice. Here’s what you do: Take a piece of paper and write down every worry and concern you have in your head. Look at your list and determine whether there’s anything you can take action to make better today. Take what concrete, specific action you can for anything within your power. Most of the time, the worries that eat at me are outside of my control – that’s why they’re eating at me. Whatever worries remain, those you can’t do anything about, say aloud, “I give these worries to the worry sheet.” Fold the sheet up and either place it somewhere out of sight or “file” it in the recycling. Whenever you think of a worry you put on the sheet already, tell yourself the sheet has it, it’s being taken care of, and you don’t have to worry. This may sound silly to you, but I promise it does help. I jot down a worry sheet whenever I drop into a worry cycle, and then – knowing the worry sheet is taking care of my concerns – let the worries go. It takes practice but once you get good at this, your mind will be a friendlier, safer place.

3)    Know that it’s okay you’re not okay. By nature, I’m a positive, optimistic person, but that doesn’t mean I can’t say this sucks and mean it. It does suck. None of us wanted this, and none of us like the sweeping, scary reality covid-19 has ushered in. You don’t have to find the silver lining, smile through the pain, or use this newfound time at home wisely. Whether we know it or not, we’re in a period of intense shared grief and mourning. This is true even if you haven’t had much change in your daily life. And if you have experienced significant change or loss, then know you don’t have to sugarcoat it.

If you’re not feeling okay with what’s happening in the world, in your life, in your day, that’s perfectly okay. It’s normal, and you’re not alone. One of my favourite resources for grief is Megan Devine’s Refuge in Grief. I highly recommend her book, website, and Instagram. While her focus is on grief associated with death, you’ll find the supports, resources, and practices all applicable to what we’re going through now with covid-19, whether death has touched you personally or not.

4)    Embrace your limits and try to live in the moment. Forget the articles urging you to make the most of this time and find your true calling while covid-19 rages – these are not reasonable requests at the best of times, never mind when you’re dealing with huge, worldwide upheaval with personal repercussions. Listen to your body and what it needs, whether that’s gentle stretching and walks, more sleep than usual, escape through story… Treat yourself as you would a wounded child or animal, and hold yourself with love, kindness, and patience. This takes practice, and it won’t always come easily, but it is one of the sweetest acts you can undertake for yourself, especially right now.

None of us knows what the future holds, even at the best of times, but when we face such huge, sweeping change, our lack of knowledge and control devastates us. None of us has clear, concrete answers about what’s to come, and projecting into an unknown future seldom grants us the peace we seek. With this in mind, try your best to stay in this moment, because that’s how we’ll make it through. One minute, one hour, one day at a time. You’re not alone. We’ll get through this together.