Fighting CF with Family and Friends
By Mark Tremblay
As early as six years old, I can remember feeling different from my three brothers in that I had a sense of heightened vulnerability, interpersonal isolation, and fear of danger. Consequently, I developed a deep-seated belief that I was somehow not safe anywhere and felt threatened even by my own family, particularly when my brothers complained that I was treated differently, or my illness stood in the way of family fun. Consequently, I had a thin skin and a fat chip on my shoulder. I felt as though if I didn’t constantly fight for what I wanted, needed, or felt I deserved that the results would be catastrophic. Admittedly, as a child born with CF, particularly when treatments were so labor and resource intensive and the prognosis was so poor, I was my family’s primary stressor—I was the identified patient (“IP”). IP is a psychological term used in family psychotherapy to describe the person in a dysfunctional family that acts out, is the symptom bearer, or serves as the conduit for a family’s dysfunction. By dint of chance I was born with CF and therefore was the family IP, so I posed the greatest existential threat to my family. Arguably, amidst the current crisis, when 98% percent of the population at large, including loved ones, family, and friends, are fundamentally transforming their lives to protect the vulnerable, we as CF patients may pose even more of an existential threat than ever. As an example, my wife and stepson, both of whom are not in a high-risk group have put their lives on hold, including: not working, telecommuting, isolating from close friends and family, as well as undertaking arduous infection control protocols and isolation procedures to protect me.
For my part, during this crisis, I struggle mightily with a heightened sense of threat so that I’m easily emotionally triggered, particularly when someone walks too close to me, forgets to wear gloves, fails to clean door handles and counters, or complains about businesses being closed. As a CF fighter, when I’m confronted with a threat, whether actual or perceived, I tend to attack directly, lash out verbally, and emotionally or physically withdraw. These are adaptive responses when it comes to fighting CF, advocating for people in the CF community, raising awareness for those outside the CF community, or pushing for policies that will improve our lives. However, when the gap between my perceived and actual threats widens too much my emotional triggers can become too sensitive, strong, or intense, causing me to inadvertently push away or harm those that I love and cherish the most. My wife and I have come to realize that often our most heated fights have centered around instances in which our misplaced anger at CF has reached a boiling point, ultimately erupting into our conscious lives and spilling into our personal relationship.
During this pandemic, many of us are experiencing a shrinking of our social support networks so that only a handful of family, friends, and loved ones remain. Since you have to rely more heavily on fewer people at this time, doesn’t it make sense that you would more intentionally nourish and cultivate those relationships?
For some adults with CF, the first step in the process might be: acknowledging that you are most likely the IP in your family and/or relationships, which means you’re the one everyone worries about, tries hardest not to hurt, and thinks about more often than they’re willing to admit. It’s imperative that you as the IP take time to examine the implications of that reality. After you’ve reflected on what it means to be the IP in your interpersonal relationships you may want to initiate a dialogue with someone close to you about how the current crisis is affecting both of you. As the IP, you can make this conversation a lot less stressful and more productive by looking outside the lens of CF to see the other person more clearly while also monitoring your own emotions and observing your own thoughts, enabling you to perceive when your survival persona is interfering with the conversation. Throughout the dialogue, it’s important to maintain your boundaries, take time-limited time outs, be transparent in discussions about content as well as process of communication, and exercise diligence in talking about one issue at a time. When the other person speaks, strive to hear them fully, from a safe place within you, rather than your survival persona, and never lose sight of the warmth and love that you feel towards the person with whom you’re speaking that led you to initiate this courageous conversation at the outset.
I’m challenging myself to be more intentional in sewing into my closest relationships during this time so that when the world returns to normal, my relational bonds will be stronger, and my life will be richer for it. I challenge my fellow CF fighters to do the same and use this time for cultivating, strengthening, and healing existing personal relationships!
About the Author: Diagnosed with CF at 18 months, I am now 50 and live in Albany, NY, with my wife MaryGrace and stepson. I have an MA in Psychology (Marywood Univ.), MPA (Syracuse Univ.), worked 6 years in the NY Governor’s Div. of Budget and currently work full-time at the Dept. of Health. I am passionate about behavioral and mental health issues including research on CF adults (presented at the 1999 American Thoracic Society International Conference). My wife and I love our Harleys, cycling and church ministry. Catch us on YouTube at “Breathing Grace”