Patient advocacy group Facing Our Risk of Cancer Empowered addressed individuals with hereditary cancer syndromes to offer suggestions for decreasing anxiety and fear during the COVID-19 pandemic.
People who know they’re genetically predisposed to cancer already live with risk, and their fear and uncertainty have likely increased with the emergence of coronavirus disease 2019.
Unfortunately, others’ reactions to the spread of the virus also known as COVID-19 can make that experience even more challenging. Watching everyone else suddenly step into their world of looming health risk has created a disconnect for some who have hereditary cancer syndromes, while others feel misunderstood as those around them scoff at their social distancing efforts or make light of interruptions to their schedules of preventive surveillance or treatment.
“In dealing with uncertainty, it can help to think about things as being neither bigger nor smaller than they are,” said Karen Hurley, a psychologist with the Cleveland Clinic who specializes in issues relating to hereditary cancer risk. “We have a reality that is pretty scary and pretty uncertain. To make it bigger than it is by your mind racing ahead to worst-case scenarios can worsen stress, and for someone to minimize it by saying ‘At least you’re not sick’ is invalidating the real feelings you’re having.”
Hurley spoke to previvors and patients in a March 26 webinar hosted by Facing Our Risk of Cancer Empowered (FORCE), a patient advocacy group focused on improving the lives of individuals and families affected by inherited breast, ovarian and related cancers.
The webinar was titled "A second helping of stress: Coping with hereditary cancer during the COVID-19 pandemic." Its goal was to teach people in this population "how to feel more empowered when stresses rare and worldwide combine," noted FORCE Senior Vice President of Volunteer Programs Sandy Cohen, who moderated the talk.
“It may not be realistic to say that all fear or uncertainty will go away. Rather, we want to reduce it just enough to get it back into a livable range so you can be fully available to yourself and the people you love … and take the best action possible,” Hurley said.
Coping with COVID-19 Emotions
Acknowledging and accepting increased feelings of stress and fear are the first steps, she said. “Anxiety feels panicky and you want to get rid of it, and that creates more stress,” but a better strategy, she said, is “accepting the anxiety and experiencing the sensations in your stomach and breathing and giving it good attention.”
She also cautioned listeners to understand that feelings of guilt might arise from a sense of helplessness to protect oneself and others. “Helpless and guilty are often close cousins,” she said.
Hurley encouraged people to note that facing “a major event afflicting an entire society at the same time is something that happens in every time and age.” She suggested considering how others in history have faced such big questions, whether that’s accomplished by reading religious texts or stories, considering how ancestors handled previous crises or simply meditating on the themes of strength and wisdom.
Finally, Hurley recommended two simple exercises that can help reduce anxiety.
The first involves looking around the room and naming three things that are blue, then three things that are not red, and so on. “This helps flip the mind out of that anxiety mind and into a more logical mind,” she said. “It’s not a cure-all, but it can give you enough leeway to engage in other things you know to do to calm yourself.”
In addition, she suggested that “When you find your mind racing to the worst-case scenario, put the words ‘I feel like’ in front of any sentence — for instance, ‘I feel like this is going to on forever.’ Notice the subtle difference between that statement (with and without the words ‘I feel’). It opens a window to help you settle.”
Tackling Coronavirus Head On
Hurley also answered questions for attendees, including the following:
I feel dismissed when people say that it’s mainly those with underlying conditions who will die of COVID-19. They don’t realize what it’s like to be wondering about your own potentially increased coronavirus risk and feeling vulnerable.
“I often steal coping phrases from 12-step programs because they’re short and sweet reminders of important principles,” Hurley said. “In this case, one that applies is that ‘other people’s opinions are none of my business.’ Your business is to support yourself well, and that’s by turning back to the community, to knowledgeable sources and a place to process concerns.”
I feel that I can’t talk about my worries over COVID-19 or my cancer risk because people tell me to be glad I’m not sick.
“You get to be picky about who you turn to for support,” Hurley said, and can either teach friends and loved ones the kind of response that is helpful or leave them to their opinions. “Don’t allow their invalidation to become yours,” she said. “Reaching out to people within the community who do get it is vital. That’s why the forms of connection that FORCE provides are so critical.”
How can I deal with the stress of canceled screenings, doctors’ appointments or preventive surgeries and not knowing when I’ll be able to reschedule them?
“This is not trivial, because the process you went into to set this up took lot of effort, including facing the reality of your risk and processing it to be able to give yourself the best of modern medicine,” Hurley said. “It can help to stay in touch with your provider and give yourself positive self-coaching along the way that it won’t last forever, you will be able to manage your risk, and that as long as you’re not facing a medical emergency, there is time to get to that contract.”
I’m angry when I see people going about their day like nothing is happening. How can I handle this?
Living with someone who is not engaging in social distancing can create feelings of helplessness and frustration, Hurley said, and speaking up is important, even if it’s difficult. Outside the house, she said, “practice backing up when someone is encroaching on your space” and perhaps bring someone along to help maintain that distance.
While some out in public may engage in “distance shaming,” Hurley added, it could be because “people under stress sometimes become a little bullying.” She suggested acknowledging that people can have varying opinions but “going back to places where you’re validated for your worth and for taking effective steps to protect yourself.”
How do I balance my need to check the news against the potential for an overdose of fear about the pandemic?
“If you’re feeling overloaded, you’ve already been on the computer too long,” Hurley said. “Practice refraining. Set a timer for how long you’re going to spend on the internet. If there’s a question you want to answer, go on and look at your trusted source for that, and then back off.”
Every time I cough, I’m afraid I have the virus. How can I not become ill with worry?
“Trust your knowledge of your body” and assume that you’ll have multiple signals if something is wrong, Hurley said. She suggested avoiding behaviors such as repeated temperature taking so as to not reinforce worrying, instead of using distraction or absorption in activities to keep fear in the background.
In concluding her talk, Hurley responded to a question from Cohen about how to guide the FORCE community “to clarity in the face of so many unknowns.”
“This is reminding me of the very early days of learning about inherited cancer risk before the genes had been identified,” Hurley said. “When we had no data for advising people about the efficacy of risk-reducing surgery, I remember that we didn’t know if it was safe to give people their genetic test results. People worried that they would start jumping out of windows en masse, but we now have data to address that.
“We’re back to being on that frontier, and it may feel like a step backward. That’s part of the undoing that COVID is pushing all of us in different ways.”
To hear a recording of the webinar and find additional resources for support, visit facingourrisk.org/about-us/about/covid-19.php.