April 20, 2024
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Article Features/Columns

THE ROADLESS TRAVELED

The realities of living with lifelong medical condition

Words: Tracy Livecchi and Lisa Morton

For many individuals, good health is something they don’t ever need to think about, and some may even take it for granted. For those living with a lifelong medical condition life is very different; as many don’t know life without physical symptoms. As someone who was born with a congenital heart condition, I know the realities of living with a lifelong medical condition. There has never been a day in my life that I didn’t intrinsically know that there was something wrong, and that I am different. Despite having several cardiac surgeries, unexpected hospitalizations and an uncertain prognosis throughout my life, I have learned how to thrive and live a full, meaningful life. Everyone’s lived experience will differ depending on their diagnosis, symptoms, abilities, support and available resources. Some people will experience pain, while others may require frequent hospitalizations, chronic fatigue or impaired functioning.

For some, their condition can become such a large part of their life and their identity, shaping their relationship with their body, the people in their life, and their world. All of these issues have the potential to greatly affect self confidence, mental health and overall quality of life. My condition began the day I was born and it really did become ingrained in much of what I did, even as a child. I was self conscious of my multiple scars, and worked hard to hide them from my peers. I would pretend I wasn’t breathless in PE, and as an adolescent, I was desperate to fit in and “be normal”, but it was impossible because of a lot of missed school and social events. Dating was always pretty challenging, too. I never quite knew the right time to let my date know about my lifelong, serious medical condition. If my body full of scars didn’t make them run away, my frequent hospitalisations would do the trick. It took years for me to finally get the support of a therapist who helped me learn to accept my body and my health. I learned that navigating life with a lifelong medical condition presents unique stressors throughout life, including an increased risk of depression, anxiety and post traumatic stress. I now know it is even more important that I take care of myself, both physically and mentally. Today I work as a Social Worker and Psychotherapist and have outlined below some of the things that have helped me, and many of the individuals that I work with:

1. Go easy on yourself

When you spend much of your day in pain or struggling, it’s easy to feel frustrated and defeated. This ongoing struggle can impact mood and self esteem. As someone with a lifelong medical condition, I know that once you begin to accept your body and medical condition it is easier to treat yourself with self compassion and self love. One way to do this is to become aware of your inner voice. Is it critical or demanding? If so, where did this voice come from? Did you internalise the “voice” of critical parents, , bullies, abusers, peers, and/or social expectations? If so, it is important to know that you can begin to replace that distorted, unhelpful self-talk with a reality based, compassionate voice. Begin by acknowledging this pattern, but then gently move away and begin to replace it with kind thoughts. Begin to speak to yourself as if you were a friend. Be sure to acknowledge your strengths through journaling and meditation, and begin to accept yourself for who you are, realising that no one is perfect.

2. Build a supportive network

Social support is one of the most protective factors for our physical and mental health. This is particularly important during times of poor health. Are the relationships in your life strong, supportive and reciprocal? Do you feel that you get back from them as much or more than what you give? Ask yourself how you feel about your relationships, and honestly evaluate if you believe they support you in a healthy way. If not, it may be time to have a loving, firm, and honest conversation with them to see if the relationship can be improved. Use calm and assertive communication when setting healthy boundaries. It is also important to look at your own contribution to your relationships. Make sure that you are making an effort and letting them know that you value your relationship. Remember healthy relationships require reciprocal expressions of appreciation and gratitude.

3. Understand, manage and express your emotions

Emotions can carry important messages about what you need, but sometimes they can be quite difficult to tolerate. Rather than suppressing or resisting your feelings, it can be helpful to give yourself space to explore, label and process them, which may help make them less distressing. If you have difficulty finding a name for them, try using an emotion wheel (can be downloaded online), which is a visual tool to help understand and verbalise how they are feeling. Afterwards it might be easier to identify what may be triggering them. The next step is to find a healthy way to problem solve, if necessary and release them. The important thing to know is you are only human and everyone experiences uncomfortable emotions. Instead of pushing them away, just let them come and go, accepting that they are only temporary. Emotions, similar to clouds in the sky, will eventually pass. Find a healthy way to sit with discomfort and wait it out. Some people do this with physical exercise, by taking a warm bath, talking to someone supportive or journaling. Many find therapy helpful in processing emotions and finding new coping strategies.

4. Evaluate your coping strategies

When experiencing stress most tend to fall back on past strategies for coping. I recommend making a list of your “go to” strategies and evaluate honestly if they are helpful or not. Some examples of unhelpful behaviours include the use of substances, overspending, overusing social media and isolating yourself from friends and family. If that is the case, find some new strategies. Some examples of helpful (and healthy!) strategies include yoga, meditation, talking to a trusted friend, physical exercise, distraction, reading, spending time outdoors, or finding a creative outlet that brings you joy.

5. Focus on what you can control

Depending on your medical condition, there may be things in life, practical or otherwise, that you may not be able to do. This can be understandably frustrating, and for many people it can be difficult to accept, but it doesn’t mean that you can’t have a full, meaningful life. One thing that may be able to help is to look at what you can control and what we cannot control. There may be feelings of loss connected to those things out of your control. Once that is done it will be easier to refocus your beautiful energy on the aspects of your life that you are able to control.

6. Allow yourself to grieve

When most people hear the term grief they usually think of feelings related to the death of a loved one. However, grief can also be experienced after any significant loss and this can be relevant to individuals (and family members) dealing with a lifelong medical condition. Some of those losses may be hard to recognise because they involve the loss of something we never knew such as experiencing a carefree childhood. Other examples of losses could include deteriorating health, missed education and employment opportunities, and an inability to participate in activities others can take for granted as a result of your medical condition

7. Prioritise self care

In order to experience well being and joy, it is important to find time for yourself. Sometimes work, chores and obligations take over and we forget to think about our own needs. However, it is really important that we experience a balance of rewarding, enjoyable experiences to maintain our health and reduce stress. Sometimes it helps to schedule these pleasurable activities; it can be useful to have bigger events to look forward to (going on a holiday), shorter term treats (going for a meal or meeting a friend) in addition to smaller experiences that we can fit into the corners of the day (reading a book or listening to music). If you believe you would benefit from increased support, there are a variety of online resources and peer support groups. If you are unable to locate support groups online you may also inquire with your medical specialist for resources they may.

Some individuals report that finding a qualified therapist can also be very helpful in telling their story and processing their lived experience, as well. It is important to remember that there are also some unexpected benefits that many individuals report experiencing as a result of their medical condition. This positive psychological transformation following stressful or traumatic events is called post traumatic growth (PTG). Some aspects of this include newfound personal strength and resilience, changed life priorities, deepened relationships and spiritual development. Some of the ways individuals can increase PTG is to share their story and to feel heard and understood by others. Talking with peers and reading similar biographical stories and nurturing a sense of gratitude can also be extremely helpful in taking control and sculpting the life that you want. Most importantly, know that you are not alone. There are millions of people with lifelong chronic health conditions.

Extracted from: ‘Healing Hearts & Minds: A holistic Approach to coping well with congenital heart disease’ by Tracy Livecchi, LCSW and Liza Morton, PhD, published by Oxford University Press. http://oup.com) Available to order internationally from most book sellers. https://www.amazon.com/Healing-Hearts-Mind-Holistic-Congenital/dp/0197657281

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