Chronic Illness, Resilience, and Adaptive Capacity

Secure yourself to heaven hold on tight the night has come
Fasten up your earthly burdens, you have just begun
                                     — Amy Elizabeth Ray, Indigo Girls

There's more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
Closer I am to fine, yeah
                         — Emily Ann Saliers, Indigo Girls

I grew up on the Texas prairie, but I love standing at the ocean’s edge, digging my toes into the wet sand, trying to keep my balance as the waves rush in. With a shiver, I take another step into the water. At first the sand seems solid, but my toes lose their grip. I sink deeper into the squishy sand and almost topple, but I know I need to brace for the next big wave. Trepidation and exhilaration–all in one moment.

Lately I’ve stepped into each day’s news with the same uncertainty, trying to keep my balance through waves of fear, pain, desperation, disgust, and, occasionally, relief and joy. I struggle to balance before the next news cycle overwhelms me with details about extreme climate events, cruel and foolish leaders, pandemics, insurrection, and war.

Even in my local community, we are in the midst of extreme drought, an uncertain electrical grid, laws that violate our health privacy and autonomy, and threats to fair elections.  Although there are instances of kindness and courage, the bad news overwhelms. It feels something like an onslaught of multiple chronic illnesses—with many causes not easily untangled and many symptoms not easily treated.

As with chronic illness, we have little hope of a quick or complete cure, and the intervention brings its own complications. Somehow, we need to find a way to address the anxiety and depression of these moments, to build resilience, or the capacity to steady ourselves and to move forward, individually and collectively. I’m curious about what we can learn from the medical community and from HSD and how to apply those lessons to challenges in our communities, large and small.

So What Does Resilience Have to Do with Chronic Illness?

Wiesmann and Hannich explain that each person responds to hardship as a “highly complex bio-psycho-social living system, which is self-creating, self-organizing, and self-preserving” (2019). That is one way to describe resilient patients as they face the challenges of chronic illness. And this view resonates with the HSD claim that resilience reflects the capacity to respond and adapt as challenging patterns emerge in the system. Resilience, from the HSD perspective, is the capacity to sustain those self-creating, self-organizing, and self-preserving dynamics, even in the face of extreme hardship.

When I did a search for articles connecting resilience to chronic illness, I found multiple references to Antonovsky, who points to “sense of coherence” as a core contributor to resilience in the face of chronic illness (for example, 1987; 1993). His research suggests that, as a resilient patient, I know that

• My challenges are comprehensible (structured, predictable, and explicable);
• My understanding of those challenges will help me manage my resources to address the challenges; and
• The challenges are meaningful and worthy of action (Antonovsky, 1987).

In other words, Antonovsky says that this “sense of coherence” combines comprehensibility, manageability, and meaningfulness. These labels are fairly abstract, but I can see clear connections to widely accepted recommendations for patients with chronic conditions, like this one from the American College of Cardiology (2022):

• Accept your new normal
• Continually monitor symptoms
• Know when your condition is worsening
• Share your concerns
• Build a support network
• Follow doctors’ directions
• Plan for the future
• Report problems promptly

As an HSD practitioner, I see Adaptive Action at the heart of these recommendations. Adaptive Action is a three-phase cycle through which we 1) observe and note patterns in our experiences; 2) strive to understand and interpret those patterns; and 3) act to generate patterns more useful and fit for the life we want to live. And then we begin the process again. The HSD short-hand for this complex meaning-making process is “What? So What? Now What?”  We can engage in Adaptive Action individually and with others, and we can use it to adapt moment-by-moment, as well to do long-term planning.

HSD also tells me that resilient systems hold Adaptive Capacity, or the capacity for everyone, throughout the system, to engage in ongoing Adaptive Action cycles in the course of their daily lives. Adaptive Capacity is what I think medical professionals envision when they encourage “resilience” in their chronically ill patients.

Now What Do I Do Next?

My next step is to integrate what I have learned about resilience and “quality of life” from the medical community and from HSD. In this table, I’ve listed questions that help me think about Adaptive Capacity and resilience in these challenging times. I offer these as springboards for your questions in your ongoing Adaptive Action.

In January 2021, in the midst of trying to navigate waves of bad news from the outside world, our daughter Dana, at 44 years, was diagnosed with Stage 4 metastatic breast cancer. That news threatened to knock us over in a heap. Resilience be damned.

But we have realized that Dana brings to this challenge three foundational strengths: an amazing spirit, her professional training as a family therapist, and her theory-based practice as an HSD Associate. Over time, Dana has used these resources as she leads us to view her cancer, not as a terrifying emergency, but as a chronic illness. She can’t “cure” the cancer, and many days are difficult. But she is acting each day (and each moment) to build healthier connections within her body and more generative exchanges among family, friends, and her medical team—all of whom are eager to support. Those actions have kept the cancer at bay for now, but, more important, her actions are helping us all to step into the future, trying to create courageous and joyful patterns. We still feel pain and sadness and fear, but we are enjoying some measure of what I think the medical community would call “quality of life.”

On good days, we can sing along with one of Dana’s favorite bands, the Indigo Girls: 

There's more than one answer to these questions
Pointing us in a crooked line
And the less we seek our source for some definitive
Closer we are to fine, yeah
Closer we are to fine, yeah

References

American College of Cardiology. https://www.cardiosmart.org/topics/heart-failure/living-with-heart-failure (Retrieved September 1, 2022.)

Antonovsky, A. (1987). Unraveling the mystery of health. How people manage stress and stay well. San Francisco: Jossey-Bass.

Antonovsky, A. (1993). Complexity, conflict, chaos, coherence, coercion and civility. Social Science & Medicine, 37(8), 969–981.

Wiesmann, U. & Hannich, H-J. (2019). A salutogenic inquiry into positive aging – a longitudinal analysis. Aging and Mental Health, 23(11), 1562–1568.