Healing: Receiving Serious Health Diagnoses & Survivorship

 When diagnosed with a life-threatening illness, such as cancer or as in many of our cases an aortic rupture or dissection, we may often experience a range of emotions and psychological responses. 

Me wearing a wound vac and chillin after my second open chest aortic procedure

The response to such life impacting news can be likened to grief, as we grapple with the loss of our former "perceived as OK" health status and we begin to confront own own mortality. The processes we encounter often mirror the five stages of grief and loss initially outlined by psychiatrist Elisabeth Kübler-Ross in her book “On Death and Dying”.  If you've never read this book you should.

Here's a brief look at these stages as applied to any diagnosis of a significant medical condition or illness but especially written here for aortic dissection/aneurysm or and/or cancer survivors as these challenges are two I am personally familiar with:

1. Denial: This is often our first reaction. We may not accept the diagnosis or may think there has been some mistake in the test results. Denial serves as a psychological defense mechanism that helps us cope with the initial shock of diagnosis.
2. Anger: As the reality of the situation sets in, we may feel anger and resentment. This can be directed toward ourselves, our doctors, loved ones, or even a higher power. I kept asking myself, "Why me?"
3. Bargaining: This stage involves negotiating or pleading with a higher power, doctors, or even oneself. We may seek to make lifestyle changes, try alternative treatments, or adopt healthy habits in the hope of reversing the disease.
4. Depression: This stage is characterized by feelings of sadness, hopelessness, and despair. We may become overwhelmed by the potential implications of our disease, including pain, disability, and especially the prospect of our untimely death.
5. Acceptance: Over time, we may reach a stage of acceptance. We acknowledge the reality of our situation and may start to make plans for our future care or end-of-life arrangements. This stage is not about being okay with the cancer or aortic dissection but rather about acknowledging our physical and mental challenges and working with our diseases rather than fighting against them.

These above stages are not linear and we may cycle through them multiple times, even experiencing more than one stage simultaneously. Importantly, not everyone will experience all stages, or in this order.

Receiving support from mental health professionals, such as psychologists or counselors, can be vital during this time. Health care professionals can provide strategies to cope with our trauma and emotions associated with our diagnoses. Additionally, joining support groups, either in-person or online, can also be beneficial, providing a platform to share experiences and feelings with those who are going through a similar situation.  Facebook support groups have been a tremendous help for me and I know for many others.  I've also met some awesome people in these support groups who inspire me and give me hope.

It's also important to note that our journey with our challenging illnesses is unique, and there's no 'right' way to react or cope. The primary goal is to find ways of managing the illness and maintaining quality of life that work best for us.

As discussed above, one of the initial stages we may encounter is denial.  Denial serves as a psychological defense mechanism that buffers the immediate shock of our diagnoses. It is a normal and in some ways, a healthy initial response, as it allows us some time to adjust emotionally to the diagnoses and to gather strength for our journey ahead.

I've personally found that denial can manifest in various ways and progress through several stages, including:

1. Shock and Disbelief: This is the immediate reaction to our diagnoses. We may feel numb, and there's often a sense of disbelief, as if what we've just heard can't be possible. We might think, "This can't be happening to me."
2. Dismissal of Diagnosis or Prognosis: We may question the competence of the medical professionals involved or insist on multiple retests, seeking a different opinion in the hope that the initial diagnosis was mistaken. We may also downplay the seriousness of the disease or believe that we will be the exception to the prognosis. This was especially true for me.  I spent so many hours on the internet researching how I would be spontaneously healed of my extensive aortic dissection.
3. Avoidance: In this stage, we might avoid medical appointments, refuse treatments, or avoid talking about the disease with friends and family. We might keep ourselves extremely busy so as to not have the time to confront the reality of our condition.  Again, I see a period of time where I did everything possible to try and get my doctors to allow me to stop taking the meds I was prescribed, including anticoagulants, beta blockers, statins, aspirin and others.  I was convinced that if I was not taking these prescriptions then I’d wouldn’t necessarily be sick.
4. Rationalization: We may also try to find explanations that could discredit our dissection or cancer diagnosis. For instance, we might attribute our symptoms to less serious conditions or to factors like stress or fatigue. We may also overemphasize stories of misdiagnosis we’ve heard or read about.  I too, to an extent was guilty of thinking my doctors may not have really known what they were seeing on the CT scans.  Ditto me on that.

While denial can serve us as a protective function initially, prolonged denial can be harmful.  Unreasonably prolonged denial can delay necessary treatment and prevent us from taking steps to manage our condition effectively.  For a caregiver, friend or medical professional it’s important to approach those of us in denial with frankness and truth but also with empathy and understanding, providing us with emotional support while also encouraging us to face the reality of our dissection or cancer.

Professional help from a psychologist, counselor, or a psychiatrist can be very helpful during our denial phase. Mental health professionals can use various therapeutic techniques to guide us gently towards acceptance of our conditions, providing us with the psychological tools needed to handle our diagnosis and the implications. As we mentioned above support groups can also be beneficial, as they allow us to interact with others who are facing similar challenges.

Both cancer and aortic dissection have been a challenge for me.  Its been well over a decade since my ascending aortic repair and I’m still living with a  complex descending dissection. It’s been seven years since my melanoma surgery, fifteen years since most of my large colon was removed and three years since half of my kidney was ablated for renal cell carcinoma. During these times I’ve experienced denial on a regular basis. Today, with the help of family and health care professionals I find myself able to recognize the stages Mrs. Ross describes in her book On Death and Dying.  Living with serious health challenges is just that, a huge challenge.  Kudos to us survivors.  Next blog post I’ll be discussing the second dimension of dealing with this type of trauma, the Anger phase.

Many blessings, Kevin