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7 Lessons From My Chronic Illness on Living With Our ‘New Normal’

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A “new normal.” The phrase is likely so familiar to those living with chronic illness as to be cliché. And now, as the world grapples with the coronavirus (COVID-19) pandemic, the phrase is increasingly being used by experts and media outlets everywhere to set expectations with the public about the duration of this crisis.

Most people previously had the privilege of going about their daily lives without making accommodations for their health. They’re confused, frustrated, depressed, angry, grieving and/or in denial about the need to do so now. They want to know “when this will end” or “when things will just go back to normal.” But in the view of many, it will be a long time — or maybe never — before life goes back to the way it was before the emergence of SARS-CoV-2. Instead, we should be talking about what our “new normal” will look like as we learn how to best mitigate the spread of the virus while avoiding a complete economic shutdown.

That’s a tough mental shift to make. I know, because since being diagnosed with an incurable chronic illness, I’ve cycled through every single one of those emotions and more. I’ve been confused that I can’t just “get over it.” Frustrated because there is no cure. Depressed, as my symptoms continue unchanged or worsened month after month, year after year. Angry that this is my life now. Grieving for the experiences I’ve missed and ones I’ll never get to have. And sometimes in denial about my limitations.

Unlike an acute illness like a bout of the flu, a chronic illness lasts months or years (or indefinitely). It doesn’t have a quick fix or even fully effective treatment. It changes your daily life so completely that using the word “normal” to describe it at all sometimes seems laughable.

Sound familiar? It should because these are qualities of the current pandemic. It has gone on for months and will likely continue. To date, there is no vaccine or cure. And shutdowns in nearly every nation on earth have turned ordinary work, school and social routines upside down. We are collectively reckoning with staggering losses while trying to figure out where to go from here.

While we can hope that a game-changing vaccine will be discovered in the near future, the long path to viability, limits in efficacy and challenges of producing and disseminating it to billions of people mean that the possibility of a COVID-free future is far down the road, if it exists at all. We should prepare ourselves for the coronavirus to become a fact of life.

So, how do we continue with our lives in the meantime? From a longtime spoonie, my advice to those who are new to this “new normal” game is:

1. Accept that it will be difficult.

There are no shortcuts, miracle cures, or easy outs on this one, despite what some politicians may say. Wishing it weren’t true doesn’t make it so. Denial can be dangerous, and only prolongs the pain of moving on.

2. Let go of the old normal.

The first step toward embracing a “new normal” is to let go of the old. Put your energy toward creating new routines, experiences and connections rather than chasing after a normality that’s gone, like enjoying a musician’s live stream instead of pining after a 10,000-person concert.

3. Grieve the loss of your old normal.

Many of us have missed out on life experiences these last few months, like international trips, graduation ceremonies, weddings or cross-country moves. We’re also missing daily experiences like meeting up with a group of friends or going to a movie theater. Big or small, missing those experiences is valid. Express and process those feelings.

4. Learn to live with the uncertainty about the future.

One of the most difficult things about this pandemic, much like a chronic illness, is that no one can really say what will happen in the next few months or years. We want answers, especially from experts who are supposed to have the answers, but sometimes there aren’t any. Don’t fixate on imperfect projections or unsupported promises looking for that certainty.

5. Make the most of the opportunities you do have.

The phrase “it could be worse” never ceases to enrage me for completely invalidating my experiences and feelings. But it’s worth remembering that despite the opportunities and experiences we’ve lost right now, others remain — cooking a new recipe at home, going for a drive, having a long phone call with an old friend. Rather than focusing on the limitations, be mindful of and enjoy what is in reach. Your attitude is your last reservoir of control.

6. Pace yourself.

Most people can rally their energy and attention for an acute crisis, whether personal or national because there is an end in sight. But this race doesn’t have a finish line. We’re constantly trying to invent one — we just need to try long enough to flatten the curve, or find a vaccine — but neither marks an end to the crisis. Some people have given up on social distancing measures or mask-wearing recommendations in a few short weeks or months. But no disease lets up just because you’re fed up. Pace your news consumption and invest in self-care to sustain your energy and willpower long-term.

7. Don’t wait for the “fix.

This combines letting go, learning to live with uncertainty and making the most of what you have right now. Your quality of life will be better for it; the only person you’re hurting by holding out is yourself. Let’s not get stuck in self-pity mode. Make the shift from short-term to long-term so you can get back to living your life in a new iteration rather than keeping it on pause.

The phrase “new normal” constantly reminds of the “old normal,” the regular life we long for. But the truth is that a new normal is a way to move past a loss, to embrace change rather than resist it. In the words of a Chinese proverb, “When the winds of change blow, some build walls while others build windmills.” I’ll be adding to my windmills. What will you be doing?

For more on the coronavirus, check out the following stories from our community:

Photo by Cade Renfroe on Unsplash

Originally published: July 8, 2020
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