How living with a chronic illness has prepared me for the COVID-19 epidemic

Hi there! It's been a while!

Since my last post almost three years ago, good health has enabled me to resume a full and meaningful life: a full-time job with the Adult Congenital Heart Association, life in a tiny house by the beach, lots of travel, time with family and friends, and immersing myself in the congenital heart disease community. It has been a dream!

In the past couple months, however, the outbreak of the COVID-19 pandemic has turned this world into a new surreal reality that has been scary and unrecognizable. With "stay at home" orders in 27 U.S. states, 3.3 million+ unemployment claims filed last week and the number of cases in the U.S. growing exponentially, our lives are disrupted and the future well-being of our country and its people is uncertain. These are scary times. That out-of-control feeling is riddling many of us with fear, anxiety and emotional exhaustion.

This is a familiar feeling for me. It might be a familiar feeling to anyone who has lived with a chronic illness.

Born with a congenital heart defect that has required four open heart surgeries and ongoing specialized care, my life follows a pattern of up and down periods of good and ill health. Five years ago I went through a period of ill health in which for three years my health was in decline and my life put on hold. I had two open heart surgeries within 15 months of each other, each with about a year recovery period. I couldn't work and didn't know if I'd be able to work again; I lost my sense of independence and the certainty of my future. It was an extremely scary, frustrating and difficult time.

But I made it! I got through it and it led me down a new path that has gifted me with new friendships and given me so much meaning. Through it, I learned some new skills--skills that taught me resilience and helped me to get through the unknown and uncertainty of the time.

The current COVID-19 epidemic is uncertainty at a whole other level: the scale and volume of this does not compare to one person's journey through uncertainty. However I do think some of the things I've learned through my ups and downs and my more recent bout of ill health are relevant and may be even be helpful to how we each choose to cope right now.

This is what I've learned helps me when I face the unknown and my life feels upside down:

Lean into your people
Connect with your loved ones: text, call, email, Facetime, set up a virtual chat with a group of friends, set up a virtual coffee hour or happy hour on Zoom. Let someone know if you are struggling or you need help (with groceries, paying the bills, emotionally). We only get through challenging times together. And right now, we are all in the same boat, so reaching out to someone will probably help them too.

Keep a routine
It is great staying at home in pajamas all day, but setting up a routine can be a game-changer for your mental health. When I was stuck at home recovering, having a regular sleep schedule, making the bed every morning and having a balanced schedule of activities kept me feeling human.

Stay active
Fresh air and physical exercise is one critical key to sanity. Even though outdoor walks were a physical struggle for me in my recovery, I always felt better after them, mentally, emotionally and even physically. Go for a walk/run every day. If it's bad weather, do some physical routine indoors.

Eat healthy and happily
Ok, so food is probably the #1 key to my emotional and psychological well-being. It is easy for me to stress eat or overindulge in comfort food during stressful times. During my recovery I saw the tangible link between what I ate and how I felt and how fast I recovered. Taking time to eat healthily will equip your body with the tools to get through stressful times. Create challenges or routine that reward yourself with a treat every day in moderation (glass of wine, brownie sundae, chocolate).

Self-care everyday
Do something every day for yourself. What helps you hit the reset button? Maybe it's one of the above things...connecting with loved ones, going for a run, glass of wine...maybe it's music, yoga, reading, Tiger King, or a spontaneous personal dance party. Whatever it is, make some time to center, focus, check out or unwind: whatever helps you to reset each day.

Humor
One of the best things my husband taught me during this last round of surgeries was that laughter really is the best medicine (aside from painkillers). Keep things light. Find ways to bring levity to your situation. Watch stand-up shows and comedies on the streaming services. (Go for nostalgia with Seinfeld or The Office and it's a double dose of good vibes.) Call that friend that makes you laugh until your stomach hurts.

Stay positive
Staying positive doesn't mean being naively ignorant of all the scary things. It's really healthy to acknowledge and express your anger, frustration and anxiety. But at the end of it, you choose how you move forward and what kind of attitude you are going to face the next step with. Choosing to be positive means choosing not to feel helpless and hopeless. Know that you are resiliant and strong and that right now is not forever. You can do this!

Gratitude
If you are able to stay at home everyday, give thanks to all the first responders (health professionals, firefighters, police and military) and essential service workers (food service workers, farmers, government workers, post workers, trash collectors, manufacturers, etc.) who are on the frontlines of this epidemic and who are keeping the rest of us fed, healthy and safe. THANK YOU!!! Gratitude gifts us with perspective.

Let's lean into our collective resilience, creativity and generosity. We will get through this together!

Stay well and healthy!
xxx