Feeling Isolated and Misunderstood

Question: As I get older with polio, my friends and family get older and have new ailments. They see me as just another person with a cane, but I think of it differently. I feel isolated and misunderstood. What are your thoughts?

Response from Rhoda Olkin, PhD: I hear you! It can be frustrating when our contemporaries see us as just another aging person with typical aches and pains and mobility issues. But there is a difference between having a disability and then aging, and aging then acquiring a new impairment.

Some of those differences are positive: we are used to coping, we have developed compensatory mechanisms, we are more likely to be open to using assistive technology, and we have insider knowledge about accessibility and assistive devices. Many of us have joined support groups, and taken steps in the home for fall prevention.

But some of those differences are not so positive: we are starting the aging process with weakness and fatigue already in effect, our incomes might be less due to retiring earlier or cutting down work hours, our expenses might be more from housing modifications and assistive device purchases and upkeep, and additional impairments compound existing limitations.

For polio survivors in particular, we have the issue of diminishing numbers, and less familiarity with polio on the part of the public. And we may feel less sympathetic with our peers who have new ailments (“You’ve lived with this for all of five minutes, quit whining!”).

They didn’t experience childhood with a disability, adolescence with a disability, dating, partnering and parenting with a disability. They don’t have early medical experiences, some of which were traumatic. They haven’t faced the daily microaggressions people with disabilities experience. And when someone asks them “What happened to you?” the answer garners sympathy, not the quizzical or frozen looks that we get when we say “I had polio.”

But all of this leaves you feeling isolated and misunderstood. Truthfully, it is very hard for those without disabilities to really understand what the experience is like. The ones with new ailments may think they get it, but inside you know they really don’t, and this alienates you. There are no easy answers to this, but there are ways to cope. First, don’t expect friends to get it. They won’t; they can’t. This is why there are support groups for polio survivors, this newsletter and PHI.

Second, take time to admire in yourself the strengths you have built from surviving polio. Are you more resilient? Better able to cope with pain? Do you have more knowledge about managing fatigue?

Third, remember that socialization is a part of living well longer. Friends may not be able to supply the kind of understanding we think we need, but stay social. Have different groups for different activities – the one you talk to when you are blue, the one you go to movies with, the one who will get you a few things at the farmer’s market, the one who asks how you are.

Fourth, volunteer to help others. Studies suggest that altruism is one of the traits associated with happiness. For example, in one study people were given money, and those who spent it on some-one else had reduced heart rates, compared to those who spent the money on themselves.

Post-Polio Health (Vol. 32, No. 4, Fall 2016)