In this era of advanced medical detection and intervention, the medical care of patients and the reduction of mortality for life threatening illness has never been greater. Against this backdrop of success, however, what is often overlooked by professionals, family, even patients, is the experience of medical illness as psychological trauma.
- While some efforts like the emerging field of Psycho-oncology are starting to address the totality of the patient and the American Psychiatric Association now officially considers “ being diagnosed with a life –threatening illness” a potentially traumatic event, it is perhaps most important that patients and families understand why and how medical illness often brings with it- anxiety, anger, depression, panic and post-traumatic stress symptoms.
- Understanding, normalizing and validating common stress reactions can demystify and lower anxiety at a time when so much feels beyond understanding or out of control.
- Given that the experience of trauma is a function of many variables including age, nature of trauma, duration and personal meaning, people will differ in their psychological response to medical illness.
- Some may experience a few symptoms which abate within months, others will deal with a delay in the experience of depression or anxiety until well after the medical crisis, and for others the persistence of emotional distress may warrant professional help.
Diagnosis -The Acute Stage
Central to the impact of trauma is an assault on our sense of self, our belief systems and our view of the world as safe, fair and predictable. Many report hearing their diagnosis with disbelief, confusion and terror. It is too discrepant to self to take in and too frightening to ignore.
How can I be a firefighter having open-heart surgery?
I was about to nurse my new baby – new mothers don’t get cancer.
I am a runner, a non-smoker – how can I have lung cancer?
How can I live an active life with Multiple Sclerosis?
For a time people are frozen between a known self that was suddenly lost and an unknown self that is ill. Many report feeling existentially alone – like an outsider looking in on a world of healthy people whose lives go on as usual. They doubt anyone can understand. Some doubt what they ever believed.
Many eventually find that it is in the connection with others who have suffered in a similar way that they find the way back to a self they never really lost.
No Diagnosis -No Safety
As terrifying as a diagnosis may be, the persistence of symptoms in the face of negative tests and experts who have no answers can be even more terrifying. The feeling that no one knows means no one can help.
One man, whose dizziness was so incapacitating that it derailed his professional activities, was enraged by his wife’s relief with each negative test result. He could not make her understand that he wanted a diagnosis. His anxiety in the face of the unknown felt worse than his dizziness or its unknown cause.
No sooner is the reality of a serious illness embraced, than it often ushers in self-blame.
Our realization that something terrible and unexpected has happened is cause for indictment.
“Why didn’t I get the annual check-ups?”
“Maybe I brought this on myself?”
Unfortunately self-blame is often compounded by the blame of family and friends who may defend against panic about a loved one and fears of illness by presuming control and prevention is completely possible.
“Why didn’t she exercise?”
“He should have gone for that stress test.”
While we all may know that healthy living can be preventive of illness, there are no guarantees. Nothing comes from blame but an illusion of control and a distraction from the self-empathy and compassion needed to go forward.
Inherent in coping with medical illness is negotiating pain. Given the powerful body-mind connection, pain is complicated. The experience of pain is a function of many factors including the person, the cause, the meaning, the expectation, the duration, and the context i.e. the presence and touch of a loved one, etc.
Relative to the experience of psychological trauma, pain can be physically and emotionally traumatic because it often physically derails our sense of control and terrifies us with the fear of no relief. Notwithstanding the immense progress in pain management, pain is often experienced as entrapping and isolating.
- “For two months, I felt like I was in a pit that I could not climb out of.”
- “ As much as everyone wants to help, you are alone with the pain – no one knows.”
- “I was torn between relief from medication and fear of dependence.”
- When asked why she never wrote, a brilliant elderly psychologist replied, “I never wrote because as a child polio survivor – being alone reminds me of the cave of pain.”
The Body Keeps Score
As with any trauma, long after surgery or intervention, the body keeps score. For a time, many maintain an anxious vigilance to any twinge, suspicious pain, or discoloration as a trigger of fear. Some have nightmares about aspects of their illness. Some are afraid to live for fear of illness.
With time and the ability to process what has happened (be it with a partner, friend, group or therapist) most move to a physically stronger place and find that a renewed sense of mastery begins to outstrip the memory and vulnerability of pain. Worry stirred by triggers becomes situational and tied to annual visits and anniversary events.
Unfortunately, some are so overwhelmed with pain that they relinquish ownership of a body that they feel has betrayed them. They ignore it, use or abuse it. They can’t re-claim a sense of control or body safety. Their struggle with substance abuse, anxiety or depression warrants connection, safety and professional help.
It is significant that as time passes after hospitalization, there is a greater incidence of PTSD in military personnel who were wounded in combat as compared with other combat veterans.
Trauma always involves loss and loss evokes shame. While seemingly not logical, many of us feel shame in face of a medical illness or as a result of changes in self due to surgery, procedures or medication regimes. Shame is our experience of a less than acceptable self – a self that is now imperfect, scarred, thinner, heavier, more vulnerable, less confident.
Given a culture that touts perfection, invincible strength, high functioning and perpetual youth – it is not surprising that we critique ourselves and presume pity or judgment from partners, friends as well as the outside world.
The reality is that the world sees all of you – not just the dimension of pain or illness you have, by necessity, been focusing upon. The most dangerous part of shame is the urge to hide from the world or give up the connections that will help you heal.
Confronting Reality – Finding Self
Much like other traumatic events, it is often well passed the acute stage and post-acute stages, which focus on survival, that the loss consequent to diagnosis and illness becomes reality.
Facing job leaves, partner role reversals, suspension of sports, limits in travel, etc. people often begin to feel depressed and anxious. They often feel glued to an illness identity. They can’t access the best dimensions of their old self and in face of the losses, they can’t imagine who they will be in the future.
The journey from illness to recovery is a possible one.
It is a journey that needs to account for the physical as well as psychological impact of medical illness.
It is a journey born of the wisdom that comes from surviving and the courage to embrace life in a new way.
Firefighter photo available from Shutterstock.