“There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they’re falling in.” – Desmond Tutu
It is well-established that people living with a serious health condition from childhood, such as congenital heart disease, are more likely to experience mental health problems across the lifespan.
This should come as no surprise. Childhood illness can involve missing out on life’s normalcies, and having to manage physical limitations and barriers to social inclusion. Sadness is a normal response to such loss and anger is a normal response to injustice. Life choices, such as education, whether to have a family, and career aspirations can also be affected. Discrimination is associated with feelings of shame, low mood, and anger.
Anxiety, a normal response to threats, can understandably be triggered by medical tests, physical symptoms, and invasive procedures, often compounded by an uncertain prognosis or concerns about being able to access timely medical care. Medical tests and procedures can be painful and frightening and unexpected symptoms may lead to a medical emergency.
It is unusual to be exposed to the same trauma repeatedly throughout life, knowing that you’ll endure it again. Our window of tolerance for detecting threats can be narrowed by adverse childhood experiences (ACES). The body’s alarm system is sounded more quickly when one is raised in a ‘hostile environment,’ challenging feelings of psychological safety across the lifespan while unresolved trauma can cause us to respond to past threats as if they are current. Feeling disempowered can also increase the risk of developing PTSD following a traumatic experience.
In infancy, a healthy attachment to our early caregivers enables us to develop the skills we need to self-soothe. For some, there may be medical barriers that interrupt this process, or parents that may be less available due their own circumstances and mental health.
Healthy emotional regulation is protective and promotes post-traumatic growth, yet children in medical settings are regularly taught to suppress their pain whilst being rewarded for being a ‘good patient,’ ‘brave,’ or ‘stoic.’
Social support is one of the most protective factors for our mental health. Sharing our problems with our peers enables us to feel validated, process our experiences, solve problems, and move forward. But what happens when your peers are not going through the same challenges as you? While many people with lifelong health problems are determined and adept at focusing on what they can do, this resilience can be tested when the opportunity to share difficult experiences is not available.
Given this context, it is time to move beyond using limited resources to gather prevalence statistics of mental health labels and focus on engendering change. We need to normalise an understandable response to the often cumulative, hidden barriers and challenges those of us living with a lifelong health condition face from infancy.
We need to promote a holistic approach to living well with a lifelong health condition and a psychologically informed approach to healthcare provision that mitigates mental health risk factors (such as disempowering aspects of care, missed education, and social exclusion) and promotes protective factors (such as social support, compassionate healthcare, and consistency of care). We need to provide a safe space for people with chronic health problems to process an understandable emotional response to uniquely challenging life events. We need to shift our focus upstream and provide emotional life jackets from infancy for what we know is likely to be a rocky life journey.
