Chronic Illness and Uncertainty

Living with the unknown

Posted Apr 15, 2019

Katie Willard Virant
Source: Katie Willard Virant

“The root of suffering is resisting the certainty that no matter what the circumstances, uncertainty is all we truly have.” ~ Pema Chödrön

To live with chronic illness is to live with a heightened sense of uncertainty.  We do not know when our symptoms will flare, if and when our illness will worsen, and whether or how well treatment will work.  Even from day to day, we do not know if we will feel well or sick.  The first thoughts that many of us have when we wake up are questions about our health:  How is our body doing today? Will we be able to go to work? To care for our children? To run errands and see friends?   

Uncertainty takes a mental toll.  It’s related to emotional distress, anxiety and depression (McCormick, 2002).  It can influence our experience of disease by worsening perceptions of pain and stress (Wright, 2009).  Research is clear that addressing illness uncertainty should be a component of our treatment plan (Wright, 2009).  

What is “Illness Uncertainty”?

Illness uncertainty is defined as “the inability to determine the meaning of illness-related events (McCormick, 2002).”  I like this definition because it highlights the necessity of meaning-making in life.  We are able to function well when we can rely on the meanings we have ascribed to our environment.  Think about driving.  We know that an octagonal red sign with the letters S T O P printed on it means that we should place our foot on the rightmost pedal in our automobile.  We count on other vehicles to understand these meanings as well, and to act accordingly.  What would driving be like if that red STOP sign could sometimes mean “Brake your car” and at other times mean “Speed up”? What if we were never certain whether our brake would work when we depressed it?  What if each driver had her own understanding of what traffic signals meant?  You may be feeling anxious and disoriented just imagining how it would feel to drive in this situation.  If you have chronic illness, you are all too familiar with these feelings, as living in your body can feel equally as fraught with danger and confusion.

Researchers describe illness uncertainty as encompassing four factors:  ambiguity, complexity, deficient information and unpredictability (McCormick, 2002).  Ambiguity occurs when an event has unclear or multiple meanings.  For people living with chronic illness, bodily sensations often are ambiguous.  Is the cough that came on suddenly an episode of my asthma or just a common cold?  Is my stomach upset a flare of my Inflammatory Bowel Disease or just a reaction to something I ate?  Do I call the doctor or wait and see?  Complexity is an experience with which many of us are familiar, particularly in treatment choices.  How does this drug work, and what exactly is the likelihood of developing medication-induced complications?  If we’re not scientists, we may be quite murky on the mechanisms of both disease and treatment.  Deficient information comes at us in the form of both too little information (doctors who aren’t the best communicators) and too much information (well-meaning friends and strangers who weigh on the regimens they just know will “cure” us).  Unpredictability is our norm, as illness can make it difficult to plan our days, our years, and our lives.  

Coping with Illness Uncertainty

If stress is the experience of disruption of meaning, then coping is what one does about that disruption (Weiner & Dodd, 1993).  Illness uncertainty disrupts our perception of control; one way of coping is to reclaim control to the extent we are able.  We may not be able to control the unpredictability of our symptoms, but we can control the strategies with which we meet those symptoms.  Having a plan in place that works to maximize health and address flare-ups can go a long way toward providing greater certainty.  The prevention aspects of your plan likely include diet, movement, rest, and maintenance medication.  The crisis aspects of your plan consist of shifts in daily routine designed to calm symptom flares. Radical reduction of activity level, adding medications, checking in with the doctor, and changing diet are examples.  Take a few minutes and either write out or talk through your plan for addressing your illness.  If your plan feels ineffective, it’s time to flesh it out.

Gather data and make inferences

Which actions improve your health?  Which actions undermine it?  You’re not likely to find one magic bullet that will cure you of disease, so be thinking in terms of a recipe full of different ingredients interacting in a beneficial way.  As you add each ingredient, note how your body responds.  You will reject some ingredients as either harmful or neutral; you will recognize other ingredients as health promoting.  Play around with amounts of your ingredients, too; notice what is too little and what is too much.  

Work with a team of responsive experts

Many health care professionals are experts; fewer are team players who work closely with patients.  In this age of managed care, physicians may not have a lot of time for extensive patient interaction.  However, you should have a method of communicating with your doctor’s office that is fast and effective.  Patient portals and frontline office nurses are some ways that today’s doctors are ensuring that their patients have access to them.  If you have questions and concerns about your illness (and with chronic disease, you frequently will), it’s essential that you have a responsive physician overseeing your care.   

Acknowledge and account for illness uncertainty

It’s important to be realistic about the heightened level of uncertainty that accompanies chronic illness.  Managing this uncertainty is yet another facet of the work we do as people who are chronically ill.  We expend mental, emotional and physical energy coping with uncertainty, and we need to honor that this work depletes our inner resources.  Give yourself breaks during the day; treat yourself gently; and find ways to replenish the energy you expend.  This is hard work; please treat it as such.

Many of us who live with chronic illness find meditation helpful in coping with uncertainty.  A meditation practice helps us learn to live in the moment and let go of our “what ifs”.  As such, it increases tolerance for uncertainty.  There are many apps and websites that provide short, guided meditations.  Find one that you like and give it a try.  Even five minutes a day may change your mindset from viewing uncertainty as “an enemy that must be eliminated” to accepting it as “the natural rhythm of life (Mishel, 1990).”  

How do you cope with illness uncertainty?  Please share in the comments below!  

References

Chodron, P. (2002).  Comfortable with uncertainty: 108 teaching on cultivating fearlessness and compassion. Boston, MA:  Shambhala Publications, Inc.

McCormick, K.M. (2002).  A concept analysis of uncertainty in illness.  Journal of Nursing Scholarship, 34(2), 127-131.

Mishel, M. H. (1990).  Reconceptualization of the uncertainty in illness therapy.  Journal of Nursing Scholarship, 22(4), 256-262.

Weiner, C.L. & Dodd, M.J. (1993).  Coping amid uncertainty: An illness trajectory perspective.  Scholarly Inquiry for Nursing Practice:  An International Journal, 7 (1), 17-31

Wright, L.J., Afari, N., & Zautra, A. (2009).  The illness uncertainty concept:  A review.  Current Pain and Headache Reports, 13(1), 133-138.