What Psychologists Should Know Before Providing Psychological Therapy to a Polio Survivor
B
y Professor Michael Kossove
A psychologist meeting a polio survivor for the first time may hear about depression, anxiety, frustration, anger, loss of independence, relationship problems, or difficulty coping with physical limitations. These are legitimate psychological concerns—but in a polio survivor, they may be only part of the story.
Before beginning therapy, the psychologist should understand Post‑Polio Syndrome (PPS) and the unique history of the person sitting in front of them.
PPS is not simply "getting older," and it is not a psychological disorder. It is a neurological condition that can appear decades after the original poliovirus infection. Common problems include new muscle weakness, fatigue, muscle and joint pain, decreased endurance, and sometimes difficulties involving breathing or swallowing. The CDC estimates that PPS affects approximately 25–40% of polio survivors.
For the psychologist, this distinction is extremely important.
The survivor may be having a psychological reaction to a physical reality—not imagining the physical problem.
First: Understand the Survivor’s History
Before attempting to interpret the survivor's emotions, learn something about the polio experience.
Ask:
- When did the person have polio?
- How old were they?
- Was the illness paralytic or non‑paralytic?
- What parts of the body were affected?
- Did they spend time in a hospital, rehabilitation facility, or iron lung?
- Did they wear braces or use crutches, a cane, walker, or wheelchair?
- Did they experience surgery or prolonged rehabilitation?
- Were they teased, isolated, or treated differently because of their disability?
- How did their family respond?
- Did they eventually become highly independent and build a successful career and family life?
- How long had they been relatively stable before new symptoms appeared?
This history matters because many survivors spent decades believing that polio was behind them.
Then, often many years later, something changes.
They begin tiring more easily. Walking becomes harder. A leg that worked reasonably well for decades becomes weaker. They develop pain. They need to sit down more frequently. They may have difficulty climbing stairs. They may begin using a cane, walker, scooter, or wheelchair.
And suddenly, the person who thought they had "beaten polio" is confronted with it again.
Post‑Polio Health International specifically warns healthcare professionals not to dismiss new neurological, orthopedic, musculoskeletal, emotional, and rehabilitation complaints simply as normal aging.
The Emotional Shock of PPS
One of the most important things a psychologist should understand is that PPS can produce a second psychological adjustment to disability.
The survivor may have already gone through this process as a child.
They learned how to walk differently. They learned how to compensate. They learned how to hide their disability. They learned how to be independent. They may have spent decades proving—to themselves and to everyone else—that they could do anything.
Now they are being asked to change those rules.
That can be devastating.
A survivor may say:
"I spent my whole life getting over polio. Why is this happening to me again?"
That statement should not automatically be interpreted as irrational thinking.
It may represent grief over the loss of a carefully constructed way of life.
Post‑Polio Health International notes that some survivors experience their new difficulties as a return to childhood experiences with polio, which can be traumatic and frightening.
Do Not Confuse PPS Fatigue With Depression
A survivor may report:
"I'm exhausted." "I can't do what I used to do." "I have to rest all the time." "I don't have the energy to go out." "I can't keep up with my friends."
Those statements can sound like depression.
Sometimes they are.
But sometimes they are PPS fatigue.
The psychologist should therefore ask what happens when the survivor rests and what happens after physical or mental exertion.
PPS fatigue can be a physiological consequence of neuromuscular impairment. The survivor may genuinely have less physical reserve than they once did. Current medical guidance emphasizes pacing, energy conservation, and avoiding the cycle of doing too much on a "good day" and suffering afterward.
The therapist should therefore avoid the assumption:
"You're staying home because you're depressed."
The reality may be:
"You're staying home because getting dressed, walking to the car, driving, shopping, and walking through the store may consume more energy than you have available."
Those are very different problems.
Do Not Tell the Survivor to “Push Through It”
Many polio survivors were raised in an era when they were encouraged to work harder, exercise harder, and overcome their disability.
That attitude helped many survivors accomplish remarkable things.
But PPS may require a different philosophy.
The goal is not necessarily to do more. The goal is to use available energy wisely.
A psychologist should understand the concept of energy conservation and pacing and coordinate with the survivor's medical and rehabilitation team.
The survivor may need permission to say:
"I can't do everything I used to do."
That is not necessarily giving up.
It may be adaptation.
The Loss of Independence
A survivor may be grieving many things that are invisible to the therapist:
- walking independently
- driving
- traveling easily
- working
- participating in hobbies
- keeping up with a spouse
- caring for a home
- shopping without assistance
- attending social events
- traveling by airplane
- the identity built around independence
Assistive devices may symbolize loss — but eventually, they can symbolize freedom.
A wheelchair may allow museum visits. A scooter may allow shopping. A walker may allow independence.
The psychologist can help the survivor move from:
"Using this means I'm disabled."
toward:
"Using this allows me to participate in life."
Expect Grief
PPS may require repeated grieving.
Diagnosis. A new limitation. Then another.
A cane becomes a walker. A walker becomes a wheelchair.
The therapist should not rush acceptance.
Acceptance is not liking the situation. It is recognizing reality and finding meaning within it.
Understand the Survivor’s Anger
Anger may be directed at:
- their body
- doctors
- family
- aging
- the medical system
- people who don’t understand PPS
- people who say “You look fine”
- people who assume it’s just aging
- the loss of abilities worked so hard to develop
- a world that has forgotten polio
Anger may mask fear.
Fear Beneath the Anger
The survivor may wonder:
Will I need a wheelchair? Will I fall? Will I lose independence? Will I be able to travel? Will my spouse have to care for me? Will I become a burden? Will I stay in my home? Will my children need to care for me?
These fears should not be dismissed.
Planning is not pessimism. It reduces anxiety.
A Complicated Relationship With Disability
Many survivors grew up when disability was stigmatized.
They were told:
"Don't let anyone know." "Try to walk normally." "Don't use the wheelchair unless you must."
Some spent decades trying to appear “normal.”
Accepting new devices can be emotionally difficult.
Ask:
"What does using a wheelchair mean to you?"
Cognitive and Memory Complaints
These may arise from:
- fatigue
- poor sleep
- pain
- medications
- anxiety
- depression
- aging
- respiratory problems
- other medical conditions
They should not be automatically labeled PPS, depression, or dementia.
Withdrawal Is Not Always Depression
A survivor may stop attending events because:
- walking is difficult
- stairs
- inaccessible bathrooms
- parking
- fear of falling
- exhaustion
- discomfort sitting
- transportation barriers
- not wanting to explain disability again
Ask:
"What makes it difficult for you to go?"
Relationships Can Change
A spouse may become a caregiver. The survivor may feel guilt. The spouse may feel overwhelmed. The survivor may resist help. The spouse may feel frustrated.
Sexual relationships may be affected.
Couples therapy can help.
Encourage Connection With Other Polio Survivors
Support groups provide:
- understanding
- shared experience
- practical solutions
- emotional validation
These conversations can be profoundly therapeutic.
Therapy Should Focus on Adaptation
Not “fixing” the survivor.
Therapy may include:
- grief counseling
- CBT
- anxiety management
- coping strategies
- relaxation
- relationship counseling
- problem‑solving
- identity work
- adjustment to devices
- maintaining social connections
- planning for future changes
- meaningful activities
- realistic goals
- resilience building
What the Psychologist Should Never Say
"You're just getting older." "You need to exercise more." "You need to push yourself." "Maybe you're focusing too much on your symptoms." "It's probably anxiety." "You need to get out more." "Everyone gets tired as they age." "You walked for 50 years, so why can't you walk now?"
Instead ask:
"Tell me what has changed." "What can you do now that you couldn't do before?" "What activities are becoming difficult?" "What are you afraid might happen?" "What do you miss the most?" "What would you like to continue doing?"
The Most Important Thing
The survivor may be confronting a profound identity change.
For decades they were a person who had polio.
Now they may be a person living with the late effects of polio.
This is not simple adjustment. It is identity reconstruction.
Final Message for Psychologists
Before treating a polio survivor, learn about polio. Before treating PPS, learn about PPS. Before treating the psychological consequences, listen to the survivor’s story.
Do not see only the wheelchair — see the person who learned to walk without it. Do not see only weakness — see decades of compensation. Do not see only fatigue — understand the energy spent living daily life. Do not see only sadness — understand the losses behind it.
Needing help does not mean losing independence. Sometimes accepting help preserves independence.
The most effective psychologist may ultimately say:
"I understand that PPS has changed your life. My job is not to tell you that it hasn't. My job is to help you find a way forward."