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For polio survivors experiencing the late effects of polio.
From the 1993 Colorado Easter Seals 1993 Post Polio educational
conference.
BOUNCING BACK
WITHOUT GUILT
Wendy Clyne, Psy.D
Transcribed from the Colorado Easter Seals
1993 Post
Polio Educational Conference
Today I'm going to be talking about some of the factors
that may hinder you from becoming your own medical advocate. Some factors
may be related to your experience of having polio, or to anyone attempting
to cope with medical problems, such as chronic pain, fatigue, weakness,
loss of function.
Even though there's an attempt now to educate
professionals and the general public about the existence of post-polio
syndrome, many of you began to have your symptoms at a time when there
wasn't much information about this condition. Not only did you not
understand it yourself, but the symptoms often went unrecognized by the
health professionals working with you. Or they may have been misdiagnosed
as depression, as hypochondriasis, or as frightening diseases such as
ALS.
When you were recovering from your polio no one said to you,
"You're doing a great job but down the road twenty, thirty, forty years
from now you might have some problems." To have to deal with the
unpredictability of having symptoms returning or other symptoms coming
back, is extremely unsettling. Whenever someone feels like they've gotten
sideswiped in life like this, feelings of being helpless, feelings of
being out of control, feelings of vulnerability are very normal. Feelings
of denial, anger, and frustration are also normal in these
situations.
It's important to check if the intensity of your
reaction to your physical limitations may not seem to match the level of
physical problems that you're experiencing. This can be a source of self-
criticism for people because
they're thinking, "Why am I having such a
reaction, it's not that big of a deal, I'm just having some weakness." But
your reactions are colored not only by the physical limitations that you
have, they're also colored by your
memories from the past. They're
colored by how much interference those physical limitations cause in your
lifestyle, in your sense of self, and in your coping
strategies.
Intense emotional reactions are a normal response to
remembering catastrophic illnesses such as polio. Even if you've made a
very good recovery, some of the things you had to go through to make that
recovery were anxiety producing and stressful.
There is a condition
called Post Traumatic Stress Disorder, which includes flashbacks,
nightmares and feelings of re-experiencing the trauma. Many of you first
heard of this disorder with Vietnam veterans. Returning veterans
did
not have the opportunity to talk about their experiences. From that
experience psychologists have gained knowledge concerning the problems
related to not being able to talk about and work through a
traumatic
experience. Today, however, there's a real recognition of the
need, the importance, of having an opportunity to talk about what people
go through (like plane crashes or earthquakes). Talking about feelings
wasn't acceptable or "in" until the late 60's or early 70's and that was a
long time after most of you went through your illness.
The people
who seem to have the most difficulty with emotionally letting go of a
traumatic event are the ones who either don't have an opportunity to talk
to other people about what they've gone through, or even if they
have
someone there they feel like they aren't able to regain a sense of
control about their experience.
PTSD symptoms can be set off by a
lot of things; by sensory input, by thoughts, by feelings. Some people
walk into a hospital and they smell the odor that reminds them of the
things they smelled as kids when they were in
the hospital, and they
start getting rattled. They start thinking about what they went through;
they start thinking about the doctors. Actually, smell is one of the
strongest triggers for memory because it has got the shortest
route to
the brain. Smells are very powerful and sometimes we don't always
recognize that it's setting off some memories.
Flashbacks and
re-experiencing the trauma can happen on a couple of different levels.
Sometimes very concrete: you have a visual memory, you can see the
doctors, you can see the hospital, you're very clear on the
memories
you are having. But sometimes the memories are more
unconscious, something called emotional memories or physical memories.
Going back to the example of the breathing problem, you might start having
trouble breathing and start to panic; you're not reacting just to the
current situation of breathing trouble, you're reacting to that situation
plus being flooded with memories of having trouble breathing and wondering
if you were going to survive when you were a child. You may not be aware
of it, it may be happening unconsciously.
Another example is
sometimes people may experience some pain in their legs. They know it's
not a huge pain but they have this intense sense of anxiety and panic.
They are asked, "Why are you getting so upset? You say it's not bad pain."
But there's this intense emotional reaction. Part of what may be going on
is an unconscious remembering of all the feelings that went with that
particular pain. This is especially true for people who experience their
polio when they were very young. Real young kids remember more on an
emotional level or kinesthetic level. They don't have the words to encode
their memories on a verbal level. For those who had polio at ages one, two
and three, you might have more emotional reactions that are hard to make
sense out of.
During the 30's, 40's, 50's, most people did not talk
about feelings; doctors didn't want to hear it and your parents said,
"Just be quiet and do what the doctor says." Intellectually, people
understand that it's good to talk about their feelings, but when it comes
to talking about post-polio syndrome this big wall comes up and they beat
themselves up about the thought they can't talk about polio. Other people
criticize by saying, "Why can't you talk about it? You can talk about
everything else." But that pervasive feeling of "I'm not supposed to talk
about it" comes up. You're dealing with strong prohibitions that you grew
up with.
Another experience on a behavioral level is that many of
you were quite young or young adults when you had your polio. Even though
you may be 60, old enough to be the parent or grandparent of this doctor
that you're talking to, you're dealing with your polio, you're
experiencing being young again, in the sense you're supposed to be quiet,
you're supposed to listen, be good and do what the doctor says.
How
do you confront or disagree with a doctor when you are feeling like a kid
and he is the adult and you are supposed to listen and do what he says? A
lot of this occurs on a more unconscious level so the more conscious you
can be of this process, the more you can say, "I'm not just reacting
because I think I'm not supposed to question him." The more conscious you
can be of that process the more in control you can be and make choices
about how you want to have it.
At the time you were experiencing
polio there was not a glimmer of an accessible world. People who were
disabled were not out in public, you did not see them around. So, as
you're re-experiencing symptoms, there may be a sense of shame that seems
totally out of context with what you're going through now. There might be
a feeling that people won't want to be around me, I shouldn't be out
there. The daily living begins to feel monumental as you worry about how
you're going to get around. How you will be accepted.
Many of you
were separated from your families. If you were out in the country, a long
ways from a medical establishment, your family had to stay where they
lived while you were shipped off to a hospital. Some hospitals
didn't
allow visiting. That sense of isolation, of being cut off from your
family, can also come up now even if it's not realistic for your current
situation. The more you are aware of this process the more you are going
to be able to manage those feelings.
Another area that I think is
complicated for people with post-polio syndrome is coping strategies. Now
the line is "No pain, No gain"; back then what was pounded into you by
physical therapists was "Use it or Lose it" or "Push
till it Hurts -
then push a little harder." The way you learned to cope after polio was to
push hard, to have a hard work ethic. The statistics show folks with polio
have a higher level of education than the general population and are four
times more likely to be employed than any othe disability group in the
United States. This is a hard-working, highly motivated group of
people.
You've worked very hard to get where you are. Now,
suddenly, people are telling you to slow down, don't push so hard, don't
work so hard. This goes against everything you've learned to do to
overcome your disability. It' stressful. People tell me they worry because
if they don't push they wil feel like they are giving up.
The
absolute worst time to try to change your coping strategy is when you're
worried and stressed. That is the worst time to find another way to deal
with what's going on, and that's exactly what people are trying to tell
you to do. You have symptoms, you don't know what's ahead for you. There's
no way you cannot be worried and stressed.
Another complication,
for those of you who had minor residual physical problems, success meant
hiding your limitations. Suddenly you no longer can hide your limitations
so there is the feeling of re- experiencing those
limitations and that
can add to the stress. Your whole way of coping has been built on hiding
your limitations. Overcoming your physical limitations has become a strong
source of pride and personal gratification. When you
overcame all the
troubles related to polio and then see the things you've accomplished
start to crumble it can be devastating.
One of the things I need to
say to spouses or professionals: unless you are also experiencing polio
pain and fatigue, you don't know what it's like. Even if you have a
chronic pain syndrome where you are dealing wit arthritis, back injury
etc. you don't have all the memories, all the old stuff that's coloring
your experience with the pain. For those of you who
are experiencing
the pain and fatigue it's important for you to understand that. When
someone says, "Oh, yes, I understand what you're going through," you can
say, "No. You do not understand what I'm going through. You may have some
ideas about that, but you don't really know what it's like."
When I
talk about pain I'm not talking about ten on a scale of one to ten, which
is the most intense pain you can have. People who experience the two,
three, four levels of pain still experience the problems that go with
chronic pain. In some ways some of those folks have a harder time because
they say, "It's not a lot of pain, it's just a little pain but it's
there
all the time." Sometimes those folks are more self-critical
because they think they should toughen up and get past that. Sometimes the
pain is always there so they can't quite get comfortable and are unaware
why they are feeling irritable and uncomfortable.
I've never met a
person who has chronic pain who also doesn't have sleep deprivation. They
go hand-in- hand; you cannot sleep well if you have chronic pain. Most of
us learn to live with chronic levels of slee deprivation, even though we
can cope we pay a price. There's a lot of research literature in
psychology about the consequences of chronic pain and
sleep deprivation
in terms of our cognitive functioning such as: Attention and
Concentration; Memory; Problem Solving. There's something calle
information processing - speed and capacity. One of the things that
happens with pain and sleep problems are both speed and capacity of
information processing go down. Even if you were someone who could always
take in a lot of information, now you might take in less information and
process it slower. For some it's more noticeable than for
others.
Other things commonly seen in people with pain and sleep
depravation, especially with post-polio problems, is staying awake - it's
hard to take in information when you're having a hard time staying alert.
Thinking clearly, even word finding can be affected by chronic pain and
sleep deprivation.
Going back to the statistics, the level of
formal education for people experiencing polio is higher than the general
population. That means many people with polio took jobs that involved
thinking, using your brain, being on top of things, being able to problem
solve. Suddenly, those capacities may not be working so well. Maybe subtle
differences other people don't notice, but you do. Even if you function in
the normal range, if you're not where you're used to functioning, it's a
loss. A loss not supported by other people who when you say, "I just can't
remember names anymore," they say, "Ah, I do the same thing." But their
situation may be a lot different than yours.
If you've used your
mind to cope and live with the world, then on top o losing physical
function there's also the sense of losing cognitive function. This adds to
the stress. Sometimes people try to attribute pain to anxiety or
depression. Anxiety does not cause pain. It can increase it by being
tense. Tensing your muscles can increase pain. Depression does not cause
pain. It can make it more difficult to deal with the pain. Stress does not
cause pain. Many doctors don't like to say, "I don't know," so they might
attribute your symptoms to being depressed.
One of the difficulties
with ruling out depression is that when a psychiatrist, a psychologist or
social worker is trying to do an assessment as to whether you are
depressed or not, most of the symptoms are things that are common in
post-polio syndrome and very common in chronic pain and sleep
deprivation.
Let me go through the list of things a psychiatrist
might check out if she/he were checking for depression: Social withdrawal
- if you have a lot of pain, not functioning well, and you're not sleeping
well, you tend not to be as active. Social withdrawal often goes with PPS.
Eating disturbance - if you hurt and don't feel well you don't have the
energy to eat, especially if you must fix it. Depressed or irritable mood
- not enough sleep can make you irritable. Diminished interest or pleasure
- it's hard to get excited about anything when anything you do takes
effort. Insomnia or hypersomnia - meaning you're trying to sleep all the
time or you're not sleeping enough. Fatigue and loss of energy - again,
very common in PPS. Diminished ability to think and concentrate.>
You can see how difficult it is for people to rule out depression
or rule in depression. There's a significant overlap in terms of some
symptoms of depression and symptoms of PPS. People will come in and ask me
"Am I depressed?" I don't know if we can sort that out. We can take care
of some of the stressors and see if that helps, but the reality is that so
much of this can be part of depression and part of what you're going
through as a result of your post-polio. To sort it out may not be that
important.
What do you do about the problems that go with
experiencing PPS? How do you get on with your life? One of the ways is to
get started grieving and getting rid of the loss. Unfortunately, for some
people, that means going back and dealing with 'junk' you didn't have
time, or opportunity, or permission for dealing with when you first had
polio. I'm not saying to feel sorry for yourself, be down all the time, or
blame the world. That's not grieving and loss. Everybody deals with it in
a different way. For some it means getting angry, for everybody it means
acknowledging that your life has changed - not changes you're happy about
but changes you must deal with.
A piece of grieving and loss is
trying to redefine your sense of self; regaining your sense of
self-esteem. If you were praised and recognized for overcoming your
obstacles and for your productivity and suddenly you're no longer able to
produce, many people start to devalue themselves. You need to value
yourself outside your accomplishments. Recognize that you are loved for
who you are not for what you do. Focus on what you can get done, not what
you can't get done. Not constantly compare yourself and evaluate yourself
based on what you were able to do ten or fifteen years ago.
How do
you do this? Write down the tasks you've accomplished that day. You might
think you've accomplished nothing until you write it down and see what
you've done. Simple tasks can feel monumental when you're dealing
with
chronic pain and fatigue. It's important to give yourself
recognition for what you accomplish. Give yourself credit for your rest
time. You're taking care of yourself - a novel concept for those who are
always pushing themselves hard. Nurturing yourself one day may be a
greater accomplishment than getting the dishes done.
To regain a
sense of control, learn to monitor yourself. The biggest key to that is
having realistic expectations for yourself. Dr. Frederick Maynard said
that folks with post-polio may take two to ten times longer to
recover
than someone not experiencing PPS from things like fractures,
flu - which creates a ripe opportunity for self criticism. Be realistic
about how long it takes you to bounce back and you'll not cause so much
stress for yourself.
You have to have health care specialists who
also have realistic expectations. Ideally, find healthcare specialists who
know about PPS - who understand this medical condition. If that's not
possible because of insurance or location, find health care specialists
who are willing to learn from you. You need people who'll remind you
"Remember, this is going to take longer than you expect." When you have
realistic expectations for yourself, you have more opportunity to feel
successful. Unrealistic expectations are a guarantee to make you feel like
you're failing.
Other ways to increase your sense of self control
are through choices, predictability, and information. One of the strengths
of support groups is the information sharing. If somebody is a little
further along in the process and can help you understand what he's going
through, you can then prepare yourself for what might be ahead. Pay
attention to your thinking. Everybody has little voices, little tape
recorders in their head (things you've heard your parents say that you
thought you'd never say) saying things like, "I'm not working hard enough.
I should be over this." You're buying into 'old tapes.' It's important to
stop that thinking and say, "Wait a minute! That was before, it's not true
now and I need to let go of that." The more you're aware of your thinking
the more you can deal with the things coming your way.
Psychotherapy can be helpful. It's not for everybody and it's
another area where it's important to be a good consumer. You need to see
if it 'fits.' With everything I'm saying today see if the pieces fit with
your experience; some pieces will and some won't. If you're looking for a
psychologist or a psychiatrist find someone you feel comfortable with,
someone who's trustworthy, treats you with respect and seems to really
listen to what you have to say. Sometimes people benefit from short term
marital or family therapy just to help those people you are living with
understand better what you're going through and improve some of the
communication. Learning to cope with PPS is a process. Things begin to get
clearer as you go along.
A lot of folks are labeled
"non-compliant." It's difficult for individuals who have experienced polio
and are now experiencing PPS to be encouraged to do things differently
from the way you learned to cope with them. You're asked to use a walker,
or use a brace [you proudly discarded years ago]; to shift the way you are
dealing with your situation. This brings up a lot of old polio memories.
When you are stressed and anxious is the worst time to make big changes. A
better way is to make changes with minor interventions at first. A way of
gaining a sense of control is by being aware of your own reactions and
trying to understand them. When someone is saying to you that you need to
be doing something very differently, you'll be able to have more ability
to advocate for yourself, deal with health care professionals and not be
labeled as non-compliant.
Some other things to help with the
treatment of some of the symptoms of post-polio are anti-depressants -
even if you're not clear if you are depressed. Make sure you take it in
appropriate doses. Folks with post- polio syndrome often require small
doses to receive the positive effects without the negative side effects.
Other helpful things: Relaxation, Biofeedback, Meditation,
Self-hypnosis. Holistic approaches can be helpful as an adjunct, not
replacement, for your medical therapy. Acupressure, Acupuncture, Massage,
Healing Touch.
Ways of gaining a sense of control: social
activism; getting involved in a support group network; distractions - such
as music; crafts and hobbies; reading or listening to books-on-tape; humor
is a very adaptive way of coping with stress.
Lastly, take care of
yourself as you would someone you very much love. Be nurturing and
accepting of yourself.
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