Q: Your June PPS Forum on abuse hit the mark. I remembered little about my polio until I started treatment for PPS. The first day of therapy I had a terrible flashback and remembered being abused. I then "saw" children I was hospitalized with being abused. I was very upset, but the vision passed. A friend said my flashbacks meant that I had post-traumatic stress disorder. I have never had another flashback. Do I have PTSD?

A: You'd think that with polio survivors in our 1995 International Post-Polio Survey reporting 34 percent more physical and 94 percent more emotional abuse than non-polio survivors, PTSD symptoms would be rampant in our patients: flashbacks, avoiding reminders of the trauma, and hyperarousal--elevated heart rate, sweating, rapid breathing and an increased startle response.

It's true that some polio survivors have flashbacks and that many have avoided hospitals because they are reminders of past abuse. Although nearly 50 percent of those in our 1985 Post-Polio Survey reported frequent anxiety, in the past 20 years I have never treated a post-polio patient I could diagnose with PTSD.

I think PTSD is rare in polio survivors because it is by definition a response to a short-lived traumatic event, like a car accident or natural disaster. In contrast polio survivors didn't experience a one-time trauma. They experienced long-term abuse: months or years of hospitalization, painful therapies and surgeries, plus physical and emotional abuse over a lifetime caused by living in a society terrified by the "dread disease" and repelled by the appearance of disability.

A new diagnosis has been suggested by researcher Judith Herman to describe symptoms caused by long-term trauma. Herman's "complex PTSD" is diagnosed in those held in captivity, unable to flee, and under the "total control" of an abuser. This includes those in concentration camps or who experienced long-term domestic violence, physical or sexual abuse, as did too many polio survivors. The symptoms of complex PTSD include persistent sadness, suicidal thoughts and explosive or uninhibited anger; flashbacks or amnesia related to traumatic events; feeling detached from one's body and isolation from and distrust of others; feeling shame, guilt, stigma, despair, helplessness or hopelessness; feeling "completely different" from other people; avoiding thinking and talking about abuse because of overwhelmingly painful feelings or using alcohol and drugs to avoid and numb feelings; giving total power to and becoming preoccupied with the abuser, with thoughts of revenge and searching for a rescuer, and even self-mutilation. Sometimes those with complex PTSD are thought by others to have a "weak character."

I have yet to meet a polio survivor who was thought to have a weak character. Polio survivors are, if anything, too strong, independent and self-sufficient. They do push away the past. But most have spent their lives caring for others, not searching for a rescuer. And polio survivors don't become preoccupied with their abusers or with revenge and don't mutilate themselves. Nor do they typically have explosive or uninhibited anger or use alcohol and drugs to avoid and numb feelings.

Yes, some polio survivors have flashbacks, as you describe. Some can't remember early abuse and do avoid thinking and talking about their painful pasts. Many feel shame, guilt, and stigma, are detached from their bodies, feel "completely different" and isolated from and distrust others. And most polio survivors have sadness, despair, helplessness or hopelessness when PPS symptoms emerge.

However, it isn't necessary or even desirable for polio survivors to find a diagnostic label in order to "explain" how they feel, physically or emotionally. Labels are commonly applied to polio survivors symptoms, both physical and emotional, and are most unhelpful. For example, polio survivors' back pain is typically incorrectly labeled as being caused by "pinched nerves" or "slipped disks" instead of being due to muscle spasms. Joint pain is often wrongly labeled as "arthritis" instead of being the result of overuse.