WHAT LIVING WITH A CHRONIC ILLNESS TAUGHT ME ABOUT UNCERTAINTY

The COVID-19 pandemic has created a level of uncertainty and fear unforeseen to date. Many of the questions being asked — how long will this last, will my life ever be the same, can I afford to live in my home, what does this mean — sound like the questions I faced early in my life.

In 1988, when I was barely 30, a doctor told me I had a shortened life expectancy. He wasn’t able to tell me what that meant other than, “it’s what the literature tells us.” My hopes of marriage and having children vanished in the time it took him to warm his stethoscope in the palm of his hand and listen to my chest. For years, I refused to accept the seriousness of my disease.

In time, I came to appreciate what living with heart disease taught me. Here are a few in hopes they help you handle the uncertainty of COVID-19.

1. Reality won’t wait for your approval. It’s impossible to forecast the changes that occur with accidents, poor choices, bad jobs, genes, failed marriages, and so on, yet we yearn for the security of knowing that our choices and visions are going to stick. Some will, many won’t. Just remember, whatever you have planned for your life will be overtaken by what life has planned for you. Being fully present in the moment is the best approach.

2. Normal is just a setting on your washing machine. I first heard this in law school when a professor banned the word from being used on our exams. “There is no such thing as normal,” she said. So when you ask yourself, “I wonder what the new normal will be” give thought to what about your pre-COVID-19 life you thought was “normal” but now see differently.

3. You are much more than a label society gives you. We all get called names, especially if, like me, you have a chronic disease — diabetic, asthmatic, arthritic, epileptic. But labels themselves can be harsh and limiting. The fallout from COVID-19 can erode self-esteem and self-worth. Don’t shrink yourself into thinking you’re merely a statistic on the nightly news.

4. When the coast is clear, play like hell. Life will throw you challenges and heartaches just by showing up so don’t wait until the last shoe has dropped to play. When you’re feeling good, smile. When you’ve got extra money, food, or knowledge, share. When it’s time to play, just do it.

5. The only creatures able to go with the flow are dead fish. There are lots of times in life when the best seat in the house is on the back row, head down and playing dumb. This is not one of them. When a crisis hits, it’s time to become your own best friend, advocate, seer, and wise-older-person (regardless of your age). Just like maneuvering through the challenges of a chaotic healthcare system, the more information you have the better. Ask questions, seek mentors, remain vigilant, and take notes. When possible ask, “What have I not thought of that is important for me to know?”

6. This isn’t my first rodeo. One of the scariest things about COVID-19 is that so much is happening at one time. Both for how we live personally and how we contribute to the safety and wellness of others. But uncertainty has happened before — a major move, infertility, financial worries, retirement, etc. — and you found ways to face the adjustments and work through them. Whatever kept you sane and moving ahead before will serve you well now.

There’s within each of us a compass pointing to true north. Keep yours close by and uncertainty will loosen its grip.

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