Chronic Illness in the Family
Today's blog post will be the first part of a two-part series on chronic illness within the family system. We will look at how chronic illness in a family member can impact the family as a whole; the characteristics of chronic illness and how medical family therapy and trauma-informed therapy work to facilitate greater understanding of the illness; and clinical strategies which can be the most useful for both families and the medical establishment in navigating the features and course of chronic illness. Clinical directions utilizing EMDR-based protocols will also be covered, with ideas on how to best approach the individual and the family to promote a more integrated approach to dealing with the many features inherent in chronic illness.
Impact
Because a chronic illness lasts over time, its lengthy stay impacts families in dramatic ways, forcing family members into changing roles and identities. Onset of chronic illness foreshadows adaptation difficulties when it forces families to confront drawn-out periods of uncertainty about diagnosis, a re-shuffling of normalized health and illness beliefs, and the issue of power dynamic inherent in families.
Once family members begin living with a chronic illness diagnosis, they experience figurative and literal losses: loss of prior identity for the patient, loss of income or opportunities for work and socialization for one or more family members, and loss of direction due to thwarted goals.
In addition, families living with one or more members diagnosed with a chronic illness must deal with a healthcare system which they may not understand, and vice-versa. Long-term, ongoing interactions between family and medical practitioners may require intervention by a medical family therapist or a trauma-informed therapist to help families enact, or continue maintaining, agency against entrenched systems. This can help families and providers alike to envision and emphasize positive health outcomes instead of getting mired in confusing strain and miscommunication. A medical family therapist may be enlisted to help, as may a counselor who has experience with chronic illness, family systems, trauma, PTSD, depression, anxiety, and any other disturbances which could potentially arise when people navigate a new reality filled with uncertainty.
Chronic Illness Characteristics
Though each person and family is unique, chronic illness possesses some predictable characteristics conceptualized in a typology which can help families and healthcare providers know what to prepare for and expect.
Onset of disease can come on suddenly and acutely, as in cases like a stroke, or can gradually set in, as in Alzheimer's or Parkinson's Disease. In both instances, the disease will follow a course and will have a prognosis.
The course of a chronic disease can be progressive, meaning it advances at an expected rate; it can follow a constant direction, as in spinal injury where level of care remains predictable; or it can be relapsing/episodic, with times of stability set off by times of crisis.
Fatal outcomes describe most terminal diseases. Non-fatal and possibly-fatal outcomes exist in cases with arthritis and heart disease, respectively. Incapacitating and non-incapacitating diseases may present as visible or may remain hidden from others.
Chronic diseases run along timelines called phases. An acute or crisis phase may involve denial within a family which has not yet received a definite diagnosis, or when the diagnosis is new, sudden and alarming. During this acute phase, the family may rally together with the help of the medical family therapist. A trauma-informed counselor may also help the family begin to understand the ramifications of an acute phase, or a new diagnosis. A type of crisis intervention may be useful in that it allows family members to move beyond the throes of shock.
The chronic phase of an illness will cause readjustment for family members who have accepted the existence of the disease and must now face losses of pre-diagnostic identity while navigating the permanent nature of change. The therapist can help the family make meaning from within a safe and non-judgmental therapeutic environment.
During the terminal phase, family members may either turn to denying the outcome, or may begin preparing for endings. The patient himself will be experiencing this phase as one in which to properly say good-bye. The medical family therapist can help facilitate understanding between medical providers and family members so that any kind of medical care remains nurturing and appropriate. A trauma-informed therapist can help families prepare for grieving, and understand that a grieving process may have also begun long ago. In both instances, normalizing the family's experience will be conducive to a fuller adjustment.
So far, we have examined the impact and characteristics of chronic illness. In our next segment, we will investigate the clinical strategies that medical family therapy and trauma-informed therapy utilize; these strategies include recognition of the biological dimension of illness; family history and meaning; the importance of respect, acceptance and healthy communication; the understanding of developmental factors; externalizing techniques which can foster non-illness identity; psychoeducation and support; increasing family sense of agency and communion; and the need for empathic presence.
See you next time!
Amy Discepolo, LMHC, EMDRIA Certified Therapiust
(Article is reprinted from Bloom Behavioral Health)
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