Shifting Perspectives on Chronic Disease

We all carry different beliefs about our health.  Health beliefs, in turn, guide much of what we do.  They guide whether we choose to walk or drive to the store.  Also, what and how we eat.  Health beliefs shape our capacity to take action, to see ourselves as healthy (or flawed) and to avoid risks.

Beliefs around health, however, rarely reflect our true potential.  For many, they are situated in past realities.  They reflect our past struggles for survival or life sufferings.  Simply caring for others with debilitating illness can shape our beliefs around life expectancy.  Some of us live health pessimistically, while others perhaps too optimistically.

Take COPD, for example.  Respiratory diseases remain a leading cause of hospitalization in Canada.  And, the breathlessness of COPD can feel so debilitating that patients meticulously plan their days to avoid it.  Shortness of breath is also so unpredictable in the early stages of disease that it almost seems to be a natural part of aging and not a true disease.

So, given the variable nature of breathlessness, patients also vary widely in their health beliefs around COPD.  About 37% of patients prescribed an inhaler twice daily comply with treatment, suggesting the majority do not perceive any health risk from not treating their condition.  As COPD progresses, many underestimate the positive impact quitting smoking would have on disease progression.  The internal disagreement helps patients to avoid the extreme inconvenience of quitting smoking.

Patients can have opinions about their health, skewed either to the positive or negative.  When beliefs lack congruence with actual health events, many patients begin to report distress (or anxiety).  Patients with advanced disease will often think themselves into a panic, especially when they can no longer make meaningful health changes.  It is estimated that up to 67% of people who live with advanced COPD will experience a panic attack.

So, health beliefs are powerful motivators for health change (or inaction).  Yet, they may not always be true.

Health as a Present State

The Shifting Perspectives Model of Chronic Illness challenges traditional theories that chronic disease progresses on a linear trajectory.  Instead of progressing inevitably towards worsening health, the fact is that many patients with chronic illness shift back and forth between events that make them feel “sick” and feel “well”.

Health in the Foreground:

When patients feel “healthy”, they are likely to report greater life satisfaction.  They feel happier and greater mastery over their disease.  Putting health in the foreground, however, is not entirely positive.  Patients who feel healthy are less likely to sustain health changes.  Many lack the constant drive to monitor their health, or undergo discomforts in the name of disease.

 

Illness in the Foreground:

When patients feel “sick”, they are actually suffering from their illness experience.  Such suffering, however, is not entirely negative.  Putting illness in the foreground can create a short-term impetus for health change.  Patients who encounter sickness long-term typically encounter higher rates of depression and chronic stress.

We all know feeling sick all the time is not sustainable.  When people place infirmity in the foreground, they run the risk of social isolation and health-related anxiety.  But, they also have tremendous power to achieve better health.

The key differentiator is hope.  Having a sense of progress and purpose in our life is powerful.  We can accept our “illness” and put it in the foreground only when we have hope.  Hope for a better future helps us to grow, to work against our reality, to seek support and stave off health-related depression and anxiety.

3 Ways to Check Your Health Beliefs

Ask Health beliefs come from our past experiences. But, our health changes on a daily basis. It is easy for us to get stuck with dated health beliefs that no longer serve us well.

Ask yourself. “When did I start believing X about my health?” And then ask: “Is this still true for me today?”

Collect Evidence Many people ignore what their bodies are telling them, in part because the facts do not jive with their story about their health.

Be open to collecting data (symptom tracking, blood pressure readings, physical fitness levels, mood & diet records) and update your personal story about health to reflect current evidence.

Seek Feedback Present your health beliefs to a professional, with the goal of seeking their honest opinion about your current health state.

Depending on your provider’s health discipline, they may conduct physical exams or order diagnostic tests. Some may make referrals to investigate presenting concerns. Your provider will order tests judiciously, discussing the benefits and risks of testing.  But, ultimately, professional advice can help update your personal health beliefs to keep them accurate.