Advice from a Social Distancing Expert

As I’m turning 50 this year, many of my friends have self-sufficient kids who are teenagers or older. Hence, I’m on a lot of threads asking how various parents not working from home (or even some supposedly working from home) are passing their time during COVID-19 "social distancing." Responses flood in like, “I’ve read 3 books!”, “We painted my daughter’s room!”, “I cleaned out 4 closets!”, “I’m binge watching <insert title> on Netflix!”, or even "DAY DRINKING!"

With our totally disabled/dependent special needs son (Emmett), we rely on our two home health nurses to take him to school to keep him safe from aspirating. When Emmett doesn't have school, the nurses come to the home to work on his therapies here which also provides some respite for me as I deal with survivorship disabilities from stage IV cancer treatment. However, our one nurse was in Orlando attending her son’s baseball tournament, so she is self-quarantined for 14 days due to a TSA agent testing positive for coronavirus. Our other nurse is dealing with an issue with her son. So these long days have consisted of diapering, toileting, lifting, feeding, medicating, and ambulation therapy in our basement; repeat, and repeat again. I am hands-on, eyes-on all day, every day. The only “breaks” I get in my day are two 45 minute stints when Emmett is in his stander, which helps with his core strength, and constipation/motility issues. 

Not only am I not enjoying the down time benefits that my other friends are during this time of critical sequestering, but my laundry to do and to put away is up to the sky, my house is a mess, my dishes are never done, and I'm exhausted. Because the only way I keep up with my life is while Emmett is at school (which isn’t happening right now). From the minute he gets on the bus at 8:30am, I spring into action tending to my chores, which are 10 times a typical household’s. As part of my survivorship, my oncologist recommended that I exercise every day to decrease chance of recurrence. I haven’t had a chance to do that either, even with my gym’s online, accessible workouts. I could probably squeeze in a workout in the evening, after my husband's work hours, but I’m physically, mentally, and emotionally drained from intensive caregiving. And I’m too busy to eat, which is annoying, since I love food. My back hurts and I’m wiped out, and it’s only Day 5. 

Between parenting an immunosuppressed child and battling cancer for five years, I’m a social distancing expert. Social distancing for the purpose of infection control is our norm in this house. When I got my fill of posts from the selfish ones among us complaining about coronavirus ruining their social lives, and the huge inconvenience it's caused by not being able to go anywhere, I wanted to say "Welcome to the Hurts' world!" But always wanting to educate and provide a different lens, I sent out this tweet:

Since I use humor to cope with the various overwhelming cards I’ve been dealt, I was more or less joking. But then I got a message from my friend and fellow #HIMSS20 digital influencer, Lygeia Ricciardi, who saw my tweet and asked if I was serious, because she had the same idea. I responded, “If you think there’s a need, then let’s get it out there!” I also conducted an informal focus group on my Facebook page and found out just how many people wanted to talk about this concept of social distancing, as well as coronavirus. And they want to talk about everything around it, including physical, mental, and emotional health concerns:

Long story short, I am SUPER proud to be a co-founder of the new series Health IRL: A Collaborative Conversation presented by Carium. (IRL= "In Real Life") Utilizing an expert clinical voice and an expert patient/consumer voice, we are going to talk about this until it isn’t a “thing” anymore. We are going to roll up our sleeves and have candid conversations about whatever our audience wants to talk about; any/all issues that are relevant and however we can best provide support. 

I was so impressed with the work Carium is doing when Ashley Dauwer interviewed me for their Patient Advocacy blog. Their approach to patient centered care mirrored my plan for fighting and beating stage IV cancer. Carium takes into account the whole health picture of the individual: mind, body, and spirit. As I have written and spoken about, I employed many similar integrative oncology techniques to help mitigate side effects and improve my recovery between treatments. I really felt a connection to the folks at Carium.  I am grateful for their platform to amplify this much needed discussion. I am also thankful for a way help others and volunteer my time during this global pandemic. 

As we all get through this uncertain time, virtual connections can help us come together, share our feelings, and come away with coping strategies to overcome and be better for it. Yes, unfortunately my experience with social distancing over the years has filled me with isolation and sadness. But it has filled me with so much more with resilience and hope that I am excited to communicate with all of you. Please join us for this worthwhile series.  

Stacy Hurt, M.H.A., M.B.A. is an award-winning 20+ year healthcare executive and stage IV cancer survivor. She has voluntarily served as a patient advocate for thousands around the world. As a Patient Experience Consultant, Stacy transforms companies and health systems to better serve their end users by incorporating her first-hand patient/caregiver perspective and implementing easy-to-use, revenue generating tools. Stacy was selected as one of ten #HIMSS20 "Digital Influencers." Connect with Stacy on Instagram Facebook Twitter or Her Website