The Myalgic Encephalomyelitis / Fibromyalgia Society of Alberta

~The CFIDS Chronicle, Spring 2008

Discussions of trauma and chronic fatigue syndrome can be controversial.
Research suggesting that people with CFS have a higher than typical history of
traumatic events can be interpreted to imply that trauma causes CFS, that people
with CFS can’t cope with stressful situations or that CFS is a psychological illness.
What such judgments fail to consider, however, is that many people with CFS
have no history of trauma prior to the onset of the illness. They also make no distinc-
tion in the severity of trauma or whether the individual experiences any lingering
physical or psychological effects from it. More importantly, though, such judgments
neglect a singularly important cause of trauma in CFS patients: the very experience of
being chronically ill.

While the onset of any illness can be traumatic, people with chronic conditions
like CFS are at an even greater risk because of what happens to them after the expecta-
tion of speedy recovery has passed. Their image of themselves is often damaged. Their
friends and family may lose patience with their ongoing limitations. Their health care
providers may be ill-equipped to manage their chronic needs. The media may not
accurately reflect or validate their illness experience. They may lose their livelihood,
and they certainly lose their health and predictability. Anyone of these experiences
can be traumatic, and it’s common for people with CFS to experience all of them in
some combination.

The failure to diagnose and treat trauma, when it occurs, can have important clinical
implications. Repeated adversity and the trauma disorders that may result can affect a
patient’s ability to cope with the illness experience, the health care system and all
aspects of life. These physical, psychological, social and spiritual traumas involve not
only the patient, but also their families, friends and co-workers. They can also impact a
person’s response to-and willingness to try-medical interventions.

There are five common types of trauma in CFS and other chronic illnesses:
(1) disease or syndrome trauma, (2) cultural or societal trauma, (3) premorbid or
comorbid trauma, (4) vicarious trauma and (5) iatrogenic trauma.

Disease or syndrome trauma

The individual’s recognition that something is very wrong-the moment when he
or she actually experiences the onset of the chronic illness-ean be as traumatizing as
the actual effects of CFS itself. The symptoms of CFS may include pain; immunological
abnormalities; the inability to walk, speak, read, write or think well; severe sleep dys-
function; and many other physical changes. Because the symptoms result in physical,
cognitive, emotional, lifestyle and social changes that cause additional pain and difficulty
for patients and their families, it’s hardly surprising that a patient’s recognition of the
severity of his or her condition is frightening, sad and inevitably accompanied by loss.
Although patients may gradually come to terms with CFS and learn productive
ways to live with it, their families may not (see vicarious trauma, below). A spouse,
partner, parent or child may find it difficult, if not impossible, to accept the patient’s
changed life. These reactions are not lost on the person with CFS and may compound
the disease trauma he or she experiences.

Cultural or societal trauma

The medical community, the media and the general public have at times stigmatized,
belittled or sensationalized CFS. This collective invalidation from mainstream culture can
contribute to a pervasive sense of isolation that can be insidiously traumatizing.

As people with CFS move through the chronic experience, with its cycles of relapse
and remission, a related societal source of trauma is the general stigmatization of people
with chronic illness, and particularly those without outward signs of disability. If a person
looks healthy-as is the case with many CFS patients-observers sometimes find it diffi-
cult to believe that he or she is suffering. In addition, current culture idealizes a work
ethic in which healthy, productive individuals are considered the most socially useful
and are valued accordingly. People with chronic illnesses who are unable to engage in
socially acceptable, productive work at their former pace may be perceived as trying to
escape from doing their fair share.

Society’s response to diminished work, social or household productivity Can be
extremely hurtful and these potentially traumatizing events tend to be repeated at the
workplace, at home among family members or among friends and neighbors.

Premorbid or comorbid trauma

It’s also important to consider traumatic events that are independent of CFS but may
be confused with it or contribute to how the patient experiences it. Premorbid traumas are
those that occurred before the illness, such as sexual abuse, assault, time spent in a war
zone, natural disasters, car accidents and so forth.

Comorbid traumas can include crises and upheavals that occur after the onset of CFS,
such as the death of loved ones, divorce, robbery or other unusual life events. They can also
include positive life-changing situations like marriage, the birth of a child or a new job.
CFS-associated cognitive or physical impairments can complicate the ability to
process life changes. Research also shows that stress and turmoil can suppress the
immune system and intensify pain. It can be challenging to separate current external
events from emotional and physical responses to CFS, and to reduce the escalation in
symptoms that may result from this type of trauma.