Living With Polio
Explaining PPS to New Friends
Post-Polio Health, Volume 30, Number 3, Summer 2014.
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 was a polio survivor.
Question: It’s easier explaining things to “new” friends as opposed to friends I have had for 30 years. Old friends expect me to be the same as 20 to 30 years ago with the same energy and activity levels I used to have. How can I gracefully handle this?
Response from Rhoda Olkin, PhD:
New friends accept who you are now because that is how they met you and have come to know you. But longer-term friends met you as a more active person. Remember that you have changed, and as you changed you naturally have been very aware of those changes from year to year, noticing an increase in fatigue, a reduction in mobility, maybe a fall here or there.
But others have not been privy to the nuances of those changes. They might notice major changes but not more subtle ones. I suspect you haven’t been giving regular updates each year, so it can seem sudden to others that you now say no to things you used to do. So their expectations seem out of synch with the new version of you. This is not out of lack of caring or callousness, but rather genuine ignorance of your new status.
So you know what you have to do without my saying. You have to talk with them about how things are for you now, the changes you have experienced, the symptoms that are new or increased. You have to explain how you manage your energy, how you choose what to do and what to say no to, how your priorities have shifted and may shift again as you age. Those who understand and accept this version of you are your true friends. If some drop by the wayside (and truthfully, some may), then you have to let them go, because they aren’t good for your self-esteem and mental health.
Of course, not everyone needs the full text and exegesis on the New You. If there are folks you have lunch with twice a year, or go to the movies with when a new Star Wars film comes out, or call/email/text funny cat jokes to, then you can keep some things private.
But your close friends deserve the truth from you and the trust you place in them when you open up. It doesn’t have to be a heavy conversation. It could be saying simply, “I wanted to let you know that my physical status has changed as I age with polio. I’m finding I’m more fatigued, that I have to monitor my activity level more. When I say no to doing something together, please know it is not personal, that I love getting together with you. But I have to make hard choices every day about what I do. If you ever feel ignored, let me know, because that is not my intent. And if you have questions, please feel free to ask.”
I know I sound easy-breezy, but I recognize that these conversations may be harder than that. Yet I suspect they also will be easier than you think. Pick your safest friend to start with. Good luck, and write back how it goes!
Response from Stephanie T. Machell, PsyD:
Since most of us don’t have the same activity level and energy we had 20 or 30 years ago I’m alternating between being impressed by and jealous of your old friends! What is their secret, and would they consider sharing it with me?
Your new friends only know you as you are now. Old friends who have been around consistently may not see the changes in you and may take for granted that you are the same (as in, “But I don’t think of you as a person with a disability.”). Old friends who only see you occasionally may be picturing you as that much younger and energetic self (or hoping that you will be, since that would mean they are too!).
But of course you have all changed. And one way of dealing with the issue would be to point out that much as they have changed, so have you, and that your changes have left you less active and energetic than you and they might wish.
This might be enough. But probably it isn’t. It might help to talk to your friends about PPS. Depending on your comfort level and your friend’s, this talk could be a “sound bite” or a more in-depth discussion that might include your feelings about what has happened to you. Be specific about how PPS affects you and what you can and can’t do. Think about things you enjoy doing together and suggest ways you might still do these.
If you’ve already done this and your friends still seem unwilling or unable to accept or remember your limitations, you can say something like, “Remember how I told you that PPS means I have to pace myself? That means I can go shopping if we stop and take breaks so I can rest. But afterwards, I will be too tired to go to the museum. Could we do that another day?”
With certain people, perhaps casual acquaintances, you might not want to explain your situation. When they plan a day you know will be too much, you could say something like, “I would love to do all of it, but these days I have to pace myself more. Could we just do one of those things?” Or you could plan something that you know they would enjoy that would be less draining for you and suggest that.
Friends want you to be all right. They may hope that if you do the things you used to do that you will feel better. Their own experiences support this, because when they get going they feel better. Helping them understand that PPS works in reverse is difficult – especially so if, like many polio survivors, deep down inside you still believe what you too were taught about exercise and hard work. Remember that helping your friends deal with your changed disability status starts with dealing with it yourself. Your own comfort will make others more comfortable, which after all is what graciousness is all about.