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Post surgery discussion

An exploration into Psychology - could you benefit?

Part 1: Some Emotional Challenges of Growing Up with a Heart Condition.

Dr Liza Morton

“Nothing to me is more BEAUTIFUL. Every fissure tells a story. Every blemish makes you more REAL. All my life I have been waiting for a heart like this; a heart that speaks the TRUTH.” from ‘Love Monkey' by Edward Monkton.

What truths do our hearts speak and do we have the courage to voice this story? We each face challenges in life as a result of being born with a heart condition.

Difficult emotions are a normal reaction to tough life events. Yet, in the midst of dealing with physical symptoms, there is not always the opportunity to deal with these feelings and adequate support is not always available. Of course, not everyone who has grown up with a heart condition will feel like this. We are all different and we all have different experiences but some of the emotional difficulties that might arise are considered here.

Outsiders:

Given the cultural significance of the heart as a symbol of love (“with all my heart”), the keeper of emotion (“heartfelt”) and the essence of life, it is perhaps not surprising that knowing that this part of us is unique means that we may feel “different”. This is often reinforced by growing up as a “miracle baby”, “special” or a “lost cause”. Discrimination, which usually involves some kind of rejection, bullying or shaming, can also lead to us feeling “different” and alone. Shame, a social emotion, is increasingly being linked to the development of anxiety, depression and low self esteem.

Hidden scars:

Congenital heart disease (CHD) is an invisible disability and, although this has advantages, can create difficulties at school, work and socially (for example, being expected to take part in P.E.). During more acute periods of illness we risk more typical discrimination such as being treated as if we are dependent, childlike and being seen as our condition (e.g, being called “the girl with the heart condition”). As a result, revealing our health problems may put us at risk of discrimination yet hiding them can make us feel like a fraud and leave us without much needed understanding and support.

Out of control:

The imbalance of power between doctors and patients can also leave us feeling out of control and dependent.

At times this can leave us feeling dehumanised, ashamed and might lead to us expecting doctors to “fix” us rather than feeling empowered to manage some aspects of our health ourselves.

Lost childhood:

Many of us grew up without knowing how long we would live, making childhood a less carefree experience. Some of us were painted an overly optimistic picture (e.g. that we were “cured” and could function “normally”) while others received an unduly pessimistic outlook.

Although cardiac care has developed rapidly, the impact of this on the body is less well understood perhaps leading to “unexplained medical symptoms”. Often, support within schools was poor and issues such as increasing awareness, educating teachers, bullying and missed schooling were not always addressed. Ongoing challenges may include making difficult decisions about treatment, enduring surgery and pain, managing physical limitations, living with implanted devices, not being able to have children, having a heart transplant and facing a reduced life expectancy. For some, specialist adult care is not available, presenting many challenges around transition and finding adequate care.

Re-living hurts:

Early exposure to medical interventions can share common themes with other types of childhood trauma including lack of control, invasion of body boundaries, problems with trust, dissociation (feeling detached from your body), flashbacks and nightmares. Early trauma can make us more vulnerable to other health problems, unexplained bodily symptoms, anxiety and depression. Heart symptoms might trigger feelings of anxiety (and vice versa) if similar feelings in the past have indicated a serious problem.

Feeling unsafe:

The importance of a secure early attachment (feeling safe and loved as a baby and child), to our main caregiver, for psychological and emotional health is well established. Yet, this can be more challenging for us since it is physically difficult to hold a baby who is attached to an array of medical drips and heart monitors, often in an incubator. For some, parents were not allowed to stay with them in hospital.

So, the impact of living with a heart condition from birth reaches far beyond any physical symptoms. The fact that this condition is there from the start helps to shape who we are. For many of us it becomes part of our identity, impacts how we see our body, changes our experience of childhood, influences our relationships, and our education and career choices. It creates obstacles that we learn to navigate around from birth. Many of us live through more challenges in childhood alone than most people will face in a lifetime. This teaches us about the uncertainty of life and just how painful yet precious it can be. We learn to be strong, to cope, to laugh at adversity, to get on with it and to fight.

Not because we are brave or good at this (although we may be) but because we have no other choice. And this gets us through, most of the time. But sometimes, some of us, get overwhelmed by what we are expected to endure. Not because we are “crazy” or “weak” but because we have been strong for too long and we have been through so much. But it can be harder to voice these feelings than it is to seek help about our physical symptoms. It can also be more difficult to find support from others who understand and are able to help. Yet, the emotional impact of living with a serious medical condition, from birth to death, is surely worthy of attention. Especially if, for some, these emotions can develop into periods of low mood or anxiety and because emotional distress can hinder physical recovery.

Through medicine we survived. Understanding how our experiences have shaped us offers us the chance to thrive. Where medicine has gifted us life we may need to look to a different field, Psychology, to heal the emotional scars. If required, there are many different types of help available and different approaches will suit different people. Emotional Support, Self-Help, Counselling and Psychological therapies can offer the chance to process and manage these emotions leaving us free to make the most of our present and future. These kinds of help are considered in the next two issues.

About the Author

Dr Liza Morton, born with Complete Congenital Heart Block, was recently fitted with her 9th cardiac pacemaker.  She has also had an ASD repaired by Open Heart Surgery.  Liza, a volunteer for The Somerville Foundation, is a Trainee Counselling Psychologist.  She has studied Psychology for many years, an interest that was driven by her wish to understand how her heart condition and extensive medical history had shaped her.  As part of her training she has undergone therapy with both a Counselling Psychologist and a Body Psychotherapist, work she feels has helped her process the difficult aspects of living with a heart condition from birth. 

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