Living With Polio

“Do I have to talk about the past?”

Post-Polio Health, Volume 27, Number 2, Spring 2011.

Dr. Rhoda Olkin is a Distinguished Professor of Clinical Psychology at the California School of Professional Psychology in San Francisco, as well as Executive Director of the Institute on Disability and Health Psychology. She is a polio survivor and single mother of two grown children.

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: People in my support group always try to get me to talk about the past. I was in an iron lung and remember a little, but, frankly, I don’t want to remember it all. I would rather live in the present. Is this OK?

Response from Rhoda Olkin, PhD:
When is it important to talk about the past? The bottom line is that this question can only be answered by you. What works for someone else is irrelevant. I cannot help noticing how many people feel qualified to tell other people how they should do things (e.g., how to properly mourn or how to be less anxious or how to load the dishwasher!). Giving advice can be helpful to the receiver, but only if the advice is based on a thorough knowledge of you and what makes you tick, rather than on what has worked for them.

So, since you have to decide, ask yourself some hard questions:

(a) Are you having symptoms of depression or anxiety? Are these symptoms new, or recurring, or long standing?

(b) Are there areas in which you feel you are functioning below par, such as socially or with family?

(c) How would you rate your overall life satisfaction? Are you reasonably content? Do you constantly feel like something is missing?

(d) When you tally up the things that are important in life – family, intimacy, work, accomplishment, community, home, meaning – do you generally feel a sense of satisfaction, or a sense of disappointment?

(e) Are there people from your past that you still feel angry at or estranged from? Are there lingering feelings of animosity that you are having trouble letting go of that seep out occasionally?

(f) Do you have trouble with emotion? Do you veer away from any emotional topics? Can you cry, or do you feel like crying and cannot cry, or never cry? Can you tell people who are important in your life “I love you?” Do you blow up suddenly and feel like there is a well of rage inside you? Do you find yourself in many battles, large and small?

These are questions that can help you figure how your past might be affecting you now. If your answers to these six areas seem to indicate that you are a well-functioning, predominantly content person with good relationships, then it would imply that the past is past and can keep its distance. But if your answers show areas of difficulty, and these are areas in which you would like to see change, it might be worth dredging up past memories so that they can be laid to rest.

The purpose of talking about the past is to get through it. Think of it like a big muddy puddle too big to skirt around. If the puddle is behind you, move on. If it’s in front of you, then sometimes there is no way to move forward without slogging through the giant puddle; pack snacks.

Response from Stephanie T. Machell, PsyD:
Like everything, it depends.

You have a choice about whether or not to remember what happened to you, as well as whether or not to talk about it. You have a right not to talk about or remember what happened to you and to decide to live in the present. No one has the right to force you to do otherwise. And especially if your memories aren’t causing you problems, not talking about them may be the wisest course of action.

If you don’t want to talk about your polio experience, doing so because others pressure you won’t be helpful. They may be pressuring you because they know that talking about their experiences has been helpful to them, and certainly research and clinical experience both show that talking about difficult experiences in a support group setting can be helpful. When others can relate and identify with what you have been through, you feel less alone – and feeling alone and unable to communicate was a key part of the polio experience for many people.

But doing this doesn’t help everyone and can even be harmful, especially when something is shared that the person regrets, or new and more painful memories are evoked but not addressed, or the response of the support group is less than empathic. Repeatedly telling and hearing stories of traumatic experiences can itself be retraumatizing. And because a support group isn’t meant to be therapy, there is usually no one present who can help if a negative experience occurs.

Paradoxically, sometimes you have to remember what happened to you in order to live fully in the present. People with post-traumatic stress disorder are stuck in time and unable to move forward until they have processed what happened to them. If you find that your memories of being in an iron lung intrude when you would rather they didn’t, or if you find that you are fearful of remembering rather than preferring not to do so, you may need to talk with a mental health professional to determine whether not remembering what happened is the best course of action for you.

In my practice, I see many polio survivors who were traumatized by what happened to them. It has been helpful for them to work on remembering what happened and on making meaning out of it in order to move on. I have been told that doing this work has improved their PPS symptoms, especially fatigue. I believe that this is so because holding memories out of awareness takes energy, and people to the with PPS can ill afford to waste energy.

People who experienced polio often lost privacy and the right to determine their own needs. Deciding whether and where to talk about your polio experience is part of regaining those.

Tags for this article:
Mental Health
Psychological Health
Support Groups