Harnessing the Power of Hope When Living with a Chronic Condition

Have you heard the Greek mythology tale about Pandora’s box? In this story, she was given a box from Zeus, who explicitly forbade her from opening it. Within the box contained all curses and miracles known to mankind, such as suffering, pain, and fear. When Pandora became overwhelmed by temptation, she opened the box and all the curses that were released were plagued upon humankind. All the miracles that were released were forever lost, except for hope—which remained safely in the box after she had closed it. If it were not for hope, humankind could not endure the suffering.

What Does Hope Mean Anyway?

All that was left inside Pandora’s box was hope. While we might think we know what hope means, Merriam-Webster’s definition of hope is “to cherish with anticipation: to want something to happen or be true”. Positive Psychology researchers define hope as, “referring to an individual's ‘goal-oriented expectations’ that include both agency (desire to achieve goals) and pathways (finding ways to achieve them),” (Ratner, 2017). A quick Google search retrieves 2,450,000,000 results for “hope”. There are countless images and quotes online describing hope, which range from highly specific to broad examples. Buildings and foundations are named after hope, entire mission statements and businesses are run with hope as the operational focus, authors have dedicated entire books to the concept, religious and spiritual practices are centered in hope, and there are many studies that look at the science behind hope and healing. Clearly, hope is an important concept in our world, and yet, its deep meaning and unique definition are on a spectrum that changes with each person and in every situation. Hope is often found in the absence of having any control, yet it gives us our power back when we feel the most lost and powerless. It is built into our DNA and we are hardwired to find hope in even the most desperate situations.

The Science of Hope

Being diagnosed with a chronic, incurable, or terminal condition is frightening and undoubtedly creates feelings of vulnerability. It can feel like the rug is being pulled from under your feet. It can be isolating, exhausting, ignored and minimized by others, painful, debilitating, and misunderstood amongst countless other experiences. Hopelessness, depression, anxiety, despair, anger, and frustration often go hand-in-hand with disease and is often overlooked by medical professionals, community supports, families, and friends. This often leads to isolation and better days can often feel out of reach.

In recent years, Positive Psychology researchers have started to delve very deeply into the science behind hope and its positive effects on protecting the brain and body from anxiety and stress overload. Numerous studies have shown a correlation between people living with chronic conditions, such as End-Stage Renal Disease (ESRD), cancer or stroke, and improved mental and physical outcomes. It is not waving a magic wand and wishing things were better that leads to improved feelings of wellness—it’s both science and developing daily, healthful habits!

So, what happens to our brains and bodies when we start to feel that hope is locked inside of Pandora’s box? According to Enayati (2013), “Belief and expectation – the key elements of hope – can block pain by releasing the brain’s endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation and motor function,” (Enayati, 2013). She goes on to further state that research has shown to have a positive impact on the nervous system and “[…] hope does not just involve a mind-to-body connection, but also a body-to-mind connection, where neural input about one’s physical condition serves as a moderator of positive and negative emotions,” (Enayati, 2013). Just like athletes train their muscles through consistent exercise and healthy habits, practicing hopefulness is just as crucial in achieving goals.

Hope for Steve

In my professional work in the Intensive Care Units (ICU) at two different hospitals, in a non-profit Kidney agency, and in a Skilled Nursing Facility, and now in private practice, I have often discussed the concept of hope with my patients, their families, my colleagues, and people in the local community. Many times, my patients’ families would share that they hope that their loved ones in the ICU would make a full recovery and return home in the physical health that they once had. Over the course of days and weeks, I would regularly check in on them to offer support and would find that what they were hopeful for initially would change. Based on the information given by the doctors and their own observations, their hope may change to promote comfort and ease suffering, to open their eyes and recognize their family member, to speak, to breathe on their own off the ventilator, to get off of Continuous Renal Replacement Therapy (CRRT) and have renal recovery following an Acute Kidney Injury (AKI), to get through surgery, etc. Their hope was so powerful that it was palpable, inspiring, and contagious.

Their hope went beyond wishful thinking, “looking on the bright side”, or unacceptance of the devastating illness, injury, or death. It was a call to action for them to be involved in discussions with the medical team, get second opinions, rally the support of their family and friends, confer with their spiritual leaders, do their own research, and remain ever-present at the bedside. This hope that their loved one would improve involved a lot of heavy lifting on their parts by learning everything they could about what was happening and advocate on their behalf when they could not speak for themselves.

Once while working in the ICU, I had a patient who we will call Steve. Steve had come in with Sepsis and went into multi-organ failure and required CRRT to keep his kidneys functioning for days and it became quickly apparent that his AKI would end up being ESRD. Fortunately, this patient had completed an Advance Directive, which guided his family to go ahead and agree to getting dialysis if he ever needed it. He was eventually able to get off CRRT and be well enough to leave the hospital and begin his dialysis journey.

While the family undoubtedly hoped that Steve would not have to be on dialysis after leaving the hospital, their hope and expectations had to shift over time, which they navigated successfully. His family’s major concerns were obviously his health and well-being, which they always hoped would improve. However, as Steve continued to become well, they also began to hope for quality-of-life once he was able to return home. This led them to request to meet with me and share their concerns. Together, we were able to navigate their concerns that included: finances, insurance, community resources, caregiver resources, transportation, and connection with their new dialysis Social Worker.

Harnessing Hope for All of Us

So, why does hope matter? Hope is the crux of coping, healing, and navigating unchartered waters in difficult times and focus on brighter days ahead. Hope helps give us the courage and motivation to keep pushing forward when we are ready to throw in the towel and overcome the significant challenges in front of us. It helps us problem-solve, connect to our resources and support systems for assistance, and take action when we have little control over our situation. Hope is present in all cultures and is a universal feeling that we can all relate to, regardless of where we live, the faith or spirituality we ascribe to, our political affiliations, gender, age, or ethnicity. It is a unifying factor that we can all recognize as indescribably powerful and helps us achieve a sense of wholeness in otherwise uncertain, uncontrollable, and challenging times.

Since March, we have all been living our lives in a very modified way. Our routines are different, the way we socialize and run errands is different, our celebrations and rites of passage practices are different, and even our recreational activities are different. The list of changes we have had to make and adapt to is endless. Consider how hope may have changed for you since March. At first, was it finding toilet paper and cleaning products at the first store you went to? Did it shift to wanting to see your friends and colleagues face-to-face instead of on a screen? Did it shift again when a loved one became ill or celebrating with a special loved one became impossible? Has hope shifted during the diagnosis or progression of your own illness? What about achieving your goals? What does it look like for you now? Does hope feel out-of-reach or stuck in Pandora’s Box for you?

These are all critical questions we must ask ourselves because it allows us the opportunity for deep introspection. It shows where our focus of attention despite facing numerous challenges, pain, depression, anxiety, and isolation to give us the best possibility for recovery, improved well-being, and quality of life. Take the time to really consider these questions and be kind to yourself—you’re human!