Living With Polio

“They just want me to be like I was.”

Post-Polio Health, Volume 25, Number 4, Fall 2009.

Dr. Stephanie T. Machell is a psychologist in independent practice in the Greater Boston area and consultant to the International Rehabilitation Center for Polio, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts. Her father is a polio survivor.

Question: I am getting weaker and my friends and family encourage me the find “the answer” and get irritated with me when I say there isn’t one answer. I think they just want me to be like I was.

Response from Stephanie T. Machell, PsyD: Yes, that’s exactly what they want! It’s hard for them to see you getting weaker. Because there’s nothing they can do to change things, they feel helpless. And because the model most of us have for being sick is one of a “disease” that has a “cure,” a condition like post-polio syndrome is hard to understand.

Their irritation won’t change your condition or improve your relationships, and certainly won’t help them (or you) to feel any better. Tell them this in a nondefensive manner. If you normally use humor, you can say this in a funny way.

Depending on your relationship with them and their coping style, there may be simple things you can do to help them to feel less helpless. You don’t want or need to become the “educator” for your friends and family about post-polio syndrome or disability, but it may help them to have some information.

Talk to them about your own frustrations about what is happening, and empathize with their frustrations. Finding ways of enlisting their support may help them to feel less helpless, as well as provide you with increased support, and, possibly, assistance that will help you to conserve energy and deal with weakness.

Finding ways to have fun together that don’t further weaken or fatigue you will help you all feel better.

Tags for this article:
Mental Health
Psychological Health
Quality of Life