Veil of Silence: Living with Congenital Heart Disease
Congenital Heart Disease (CHD) is the most commonly diagnosed birth abnormality in the US. Much attention has rightly been focused on the medical needs of these children and on providing their parents and caretakers with resources. Little attention, however, has been paid to the psychosocial impacts on these individuals, especially as they grow, mature, and become adults living with a serious, chronic medical condition.
In this excerpt of Healing Hearts and Minds, authors Tracy Livecchi and Liza Morton discuss why it’s difficult to address the emotional impact of CHD.
There are many factors that can get in the way of us being able to recognize and process distressing feelings. For the most part the unique challenges that we face as a result of having a CHC are not shared by our family and peers, and in most situations, society just isn’t designed to accommodate people with lifelong cardiac issues. Because of this, it can be difficult to get validation for what we are feeling, and often we have to find ways to navigate these feelings by ourselves. It can be easy to forget this and wonder why we are struggling with other more typical life issues when those around us are not. The fact that our family and peers are not experiencing these issues can mean that we minimize their impact on us. Because there is no one to share them with, no common language or representation in films, TV shows, or books, we may “compare and despair” if we fall behind in our education or life goals or are unable to “keep up” with our peers. It is essential we recognize this and stop comparing ourselves to others who are on a completely different life journey.
We might even become self-critical, attributing our distress to something wrong with us rather than acknowledging the hidden barriers that even we don’t see. It is important to recognize these additional challenges and the feelings they evoke so that you can validate your lived experience and accommodate any additional support, time, or understanding you may need and deserve. We will talk more about this in Chapters 5–9.
Expressing your feelings, or emotional release, is essential to your overall health and well-being.
Expressing your feelings, or emotional release, is essential to your overall health and well-being. Usually it feels good to have the opportunity to get it off your chest. Some of us may have picked up on messages from early on that we should be brave and grateful for the life we have been gifted and that by showing our distress or vulnerability we are somehow disrespecting our care providers, upsetting our family, or being a burden. We may even feel that showing emotion makes us weak. Expressing a normal response to difficult life events is not weak. Quite the opposite: showing vulnerability takes courage. This is not disrespectful to anyone, and it does not mean that you are ungrateful. Sharing your feelings and asking for support means that you are strong and moving toward positive change. Social support is one of the most protective factors for mental health and well-being, and it is essential that we are able to access this.
There can also be a wider cultural veil of silence within the CHC community where individuals are reluctant to share their experiences because they don’t want to seem like “a complainer,” attract pity, worry their loved ones, or feel they need to shield their stories from parents with newly diagnosed children or others with the same condition. Of course, we don’t want to upset anyone, and there is always an appropriate time and place for sharing our experiences. Yet it is important to find a supportive place where you are able to safely tell and share your story, especially the difficult parts. This will hopefully enable you to feel a sense of relief and to integrate your lived experiences. Further, lessons can’t be learned unless we share, discuss, and work together to make things better.
Because we live with our heart condition for our entire lives, ironically we don’t always get the same support that others do when they develop a medical condition.
Because we live with our heart condition for our entire lives, ironically we don’t always get the same support that others do when they develop a medical condition. It is taken for granted that someone who has been newly diagnosed with cancer or an acquired heart problem will have an emotional and psychological reaction to this. It is routinely accepted that they will need support throughout their sometimes time-limited treatment and medical journey, with holistic care packages often being offered. Yet we (and others) often don’t recognize this need across our own CHC lifelong journey, somehow expecting ourselves to remain stoic regardless of the many bumps along the road.
Sometimes we don’t feel these responses during the triggering situation because we go into survival mode. For example, if you are told during a routine hospital checkup that you need to stay in the hospital for further tests, you may appear to cope well with this news. You might jump into autopilot and organize your work and family, arrange a hospital bag, and figure out all the practical logistics. You might make jokes with your care team and family “Here we go again” or “I just like to keep life interesting.” It may be after the storm has passed, once you are recovering back at home, that you start to feel upset. This is entirely normal. Often our bodies go into survival mode in response to threat and adversity. Often it is only afterward, when we feel safe again, that we start to process these feelings.
Tracy Livecchi, LCSW, is a Clinical Social Worker in Private Practice and is the Mental Health Consultant to the Adult Congenital Heart Association’s Peer Mentorship Program. Tracy was born with a complicated CHC which has made it necessary for her to have several surgeries and hospitalizations throughout her life.
Liza Morton, PhD, C.Psychol, is a Chartered and Registered Counseling Psychologist practicing in Scotland, UK. Born with complete heart block and a hole in her heart, in a world first at the time, Liza was fitted with her first cardiac pacemaker at just 11 days old in 1978.