WHY Do I Feel So Alone?

Question: "I've heard the comment that polio survivors often feel alone. Why do you think this is so ? Do others with chronic conditions feel similar? Why do we as a group often feel this way, I have asked myself many times. I have a hard time letting others in for reasons I am unaware of.“

Our Answer: What a marvelous question.

There are probably a 100 reasons why so many survivors feel this way.

Have you ever read the book “The Bookwoman of Troublesome Creek” by Kim Michele Richardson? Although it’s not about polio, it is about being different due to a medical condition, from those who surround the main character Cussy Mary. Mary (known as Bluet) and her father are ostracized by everyone in their community because their skin is blue. The story is about how the thoughts and feelings of a lovely, intelligent woman are affected by things she’s experienced though out her life.

So many children with polio were left for months or years in hospitals, have lived a life of disability, were teased mercilessly or in many cases asked not to "speak" of having had polio. Although there are fewer and fewer in-person support groups, perhaps this is part of the popularity of the "zoom" support groups that have popped up all over the US and abroad.

We have discovered that when survivors write and then allow us to publish their polio history, they discover they aren't as alone as they thought. When we put your stories in this newsletter and on our website, there is, without question, a common theme - camaraderie.

In his paper “Psychological Trauma and Its Treatment in the Polio Epidemics”, survivor/historian Daniel J. Wilson, PhD explores “the kinds of psychological trauma” that was experienced by polio patients in the 1940’s and 1950’s in the United States.

“I argue that the  trauma was the result of the experience of sudden paralysis, the conditions under which patients were treated, and the expectations for rehabilitation derived from the psychosocial context of the period. Psychiatric and psychological counseling in hospitals was only beginning to be offered in this period, and most polio patients received little or no counseling or assistance in dealing with their psychological problems.

Contemporary psychological studies suggest that many polio patients suffered from psychological problems but that they were relatively mild. However compared with the many studies of the physical problems of polio patients, there were relatively few studies of the psychological issues associated with the disease.

The narratives and memoirs of polio survivors vividly testify to the psychological burden they experienced as patients during both the acute phase of the illness and during rehabilitation.”

Read the entire document HERE

In his article “We Have Nothing to Fear?”, Richard L. Bruno, PhD states

“A more common disability-related vulnerability is the fear of being physically or emotionally abused by someone you know. Our 1995 International Survey found that polio survivors reported 34% more physical abuse and 94% more emotional abuse than did those without disabilities. All that ‘extra’ abuse was due to polio survivors having had “the dread disease” and looking disabled. Abuse was dished out not only by strangers — nurses, doctors, physical therapists — but also by parents, siblings and neighbors. Polio survivor Molly was welcomed home from the rehabilitation hospital by a neighbor scolding that her wheelchair was ‘ . . . upsetting people. You cripples shouldn't be allowed in public!’ “

Read the entire article HERE

In addition, you may find this article from Dr. Bruno interesting: Compliance with Treatment for Post-Polio Sequelae: The Effect of Type A Behavior, Self-Concept and Loneliness

We asked Family Therapist William Montgomery, MFT for help with this question.

Read his fascinating article: Polio Survivors - WHY Do We Feel So Alone?