|
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.
Back
to Post Polio Connections
|
