I recently listened to a talk given by Maya Shankar, a renowned cognitive scientist with a concentration in behavioral science. While discussing how programmed we are to avoid uncertainty and how much stress that uncertainty causes us, she highlighted a study from 2016 that found when subjects were given a 50% chance of receiving a painful electric shock, they were significantly more stressed than those subjects who were given a 100% chance of receiving a painful shock. It is the uncertainty that generates increased levels of stress and anxiety more than the actual problem being addressed.
As the parent of a CHD warrior, this resonated with me—just as I imagine it might with many of you. Our CHD warrior is 6 years old. She was born in 2016, diagnosed with truncus arteriosus, had her first open heart surgery (OHS) repair at 11 days old, a catheter balloon procedure at 12 months, and her second OHS at 18 months due to stenosis in her pulmonary arteries. With each of these procedures there was always a period of time leading up to scheduling where our medical team spent time weighing the most appropriate actions.
It was during these periods of uncertainty that my stress level was through the roof.
I remember an immense sense of relief each time we had a “plan” set (even when that plan was terrifying OHS) and a huge spike in stress whenever our plan was derailed, which happened a number of times—resulting in ECMO or delays from cold viruses, etc. For the last four years, we have had the blissful pleasure of our annual cardiology checkup resulting in a “looks good, no significant change, see you in a year” outcome.
Clearly in the back of our heads we know it is only a matter of time. Our first heart surgeon warned us that this is a marathon, not a sprint. We must pace ourselves.
Our daughter’s CHD will require care for the rest of her life with additional OHS almost guaranteed at some point in the coming years, as well as catheter procedures to balloon arteries or fix valves. While our most recent echo and checkup was still along the lines of prior years with no major changes, we have been asked to get a CT scan on the calendar, just to get a better understanding of the mild stenosis developing in her pulmonary arteries.
Additionally, our daughter has recently started complaining of her heart racing or her chest feeling tight for which we now have her wearing a portable monitor for a time. While thus far, indications are good news—it is likely that her reported symptoms are the result of a series of respiratory infections going around and associated chronic coughing—the combination of next steps with a CT scan and my daughter’s comments about her heart have brought all of my PTSD back and clearly raised the subconscious stress that comes with the uncertainty of what lies ahead.
As my stress level has increased in the past several weeks, I have found myself reflecting on the results of the study Maya referenced. In addition to observing something all of us CHD parents already know, that uncertainty generates more stress than certainty (regardless how frightening that certainty is), one of the additional takeaways of the 2016 study was that people who experienced the highest spike in stress during periods of uncertainty were better able to judge the risks involved and make better decisions.
I take heart in this observation. I remind myself that I am only human and that the stress I am experiencing is redirecting my focus to my daughter. It helps me reassess my priorities and forces me to simplify and declutter my life. Additionally, reminding myself that my spike in stress is natural and serves an evolutionary purpose in some ways helps me take action to manage it.
In the short term, I try to break down what I know and what I don’t know and focus on what I have certainty or some modicum of control over to help me manage my stress. I try to carve out time for personal pampering and not feel guilty about it. I also remind myself it is OK to let myself feel angry at times about how unfair this all feels (within reason, conscious not to let it overwhelm me).
Most important, I consciously slow down and block time (even five additional minutes here and there) to hug, cuddle, snuggle and play with my CHD warrior as well as her two siblings and my husband.
In the long term, I am working to engage with and support organizations like ACHA, whose mission is to make the future for our CHD warriors the brightest it can possibly be. Taking part in organizations like ACHA, as well as growing CHD support groups, helps lower my stress and uncertainty about what the future holds for my little heart warrior.
Life in general is uncertain, and for our CHD warriors even more so, but I remind myself we can always choose to create small certainties in our life to help us manage. All the while, I take solace in the fact that the stress foisted onto us is there for a scientifically proven reason: To drive us to learn quickly, make better decisions, and focus on being the best advocate for our CHD warriors that we can be.
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