The Psychological Impact of a Spinal Cord Tumour and How Counselling Can Help

Being diagnosed with a spinal cord tumour can change a person’s life in ways that extend far beyond the physical effects of the tumour itself. Surgery, rehabilitation, and neurological disability are often the immediate focus, but the emotional and psychological consequences can be just as significant. For some people, these feelings occur around the time of diagnosis and treatment. For others, they may not fully emerge until months or even years later.

Even someone who had their spinal cord tumour successfully treated many years ago may continue to live with its consequences. Understanding this psychological impact is an important part of recognising the whole-person experience of spinal cord tumours.

A Spinal Cord Tumour Can Be a Traumatic Experience

Being told that there is a tumour within or around the spinal cord can be frightening. There may be uncertainty about whether the tumour is benign or malignant, whether surgery is possible and, most frighteningly, what neurological function might be lost.

Questions can suddenly dominate someone’s thoughts:

• Will I still be able to walk?
• Will I be able to work?
• Will I regain the function I’ve already lost?
• Could the tumour come back?
• What will my life look like afterwards?

Major spinal surgery and lengthy rehabilitation can themselves be traumatic experiences During this period, however, people are often concentrating primarily on getting through treatment and recovering as much function as possible. There may simply be little opportunity to process emotionally what has happened.

It is therefore possible for someone to appear to cope remarkably well at the time, only to recognise the psychological impact much later.

Grieving for the Life You Expected

One of the less discussed consequences of neurological disability is grief. Someone surviving a spinal cord tumour may be extremely grateful to be alive while simultaneously grieving for abilities or opportunities they have lost. These aren’t contradictory emotions.

Depending upon the location and severity of spinal cord damage, someone may experience permanent changes involving:

• Walking and mobility
• Strength and coordination
• Sensation
• Pain and spasticity
• Bladder and bowel function
• Sexual function
• Fatigue
• Independence
• Employment
• Relationships and social life

These changes can affect someone’s sense of identity.

There can effectively be a “before” and “after” in someone’s life, particularly when the tumour occurred when they were young. Accepting that distinction can take many years.

Living With an Unpredictable Body

One of the psychologically difficult aspects of spinal cord damage is unpredictability. Someone may know what they are physically capable of, but their ability to perform those activities can vary considerably from one day to another.

Fatigue, pain, spasticity, poor sleep, temperature, illness, and other factors can affect neurological function. A person might manage an activity relatively well one day and struggle with the same activity another day. That unpredictability can gradually affect confidence.

Everyday activities that other people undertake spontaneously may require considerable planning:

• How far will I have to walk?
• Will there be somewhere to sit down?
• Is the building accessible?
• Where are the toilets?
• Will I have enough energy to get home afterwards?

This constant calculation can itself become exhausting.

The Fear of Future Deterioration

People who have experienced a spinal cord tumour may also worry about the future. Even where a tumour has been completely removed and recurrence is unlikely, permanent spinal cord damage can occur.

As someone gets older, they may wonder how ageing will interact with their existing neurological disability. A deterioration in walking, increased fatigue or another unexplained neurological symptom can understandably create anxiety. For somebody who previously experienced a spinal cord tumour, a change that another person might dismiss as insignificant can sometimes trigger the thought:

“What if something is happening again?”

Regular medical monitoring where appropriate and having healthcare professionals who understand someone’s neurological history can therefore provide psychological reassurance as well as physical healthcare.

Relationships, Intimacy and Confidence

Spinal cord disability can also affect relationships and someone’s perception of themselves. Mobility difficulties, bladder and bowel problems, altered sensation, sexual dysfunction and fatigue can all affect confidence around dating and intimacy.

Someone may worry about how a potential partner will react to their disability or whether they will be considered physically attractive. Existing relationships can also change when a partner does take on additional practical or caring responsibilities. These subjects can be difficult to discuss with friends or family, leaving some people dealing with them largely alone.

Feeling Different From Everyone Else

Spinal cord tumours are relatively rare. Consequently, someone may well go through their entire life without directly meeting another person who has experienced the same condition.

Friends and family may be extremely supportive while still finding it difficult to understand what living with spinal cord damage feels like. Visible mobility problems may be easy for other people to recognise.

The invisible consequences can be much harder to explain; neurological fatigue, altered sensation, neuropathic pain, bladder and bowel difficulties, temperature sensitivity and the enormous amount of energy sometimes required simply to move around. This can create a peculiar form of isolation. Being surrounded by people who care about you while still feeling that very few people truly understand the experience.

Why Psychological Effects Can Appear Years Later

There is no timetable for emotionally processing a spinal cord tumour. Someone diagnosed when they are young may initially concentrate on rehabilitation, education, employment and rebuilding their life. Years later, their perspective may change.

Seeing friends progress through careers, relationships, marriage, parenthood, and other life stages can sometimes highlight the ways in which disability has affected their own choices and opportunities.

Ageing can also make previously manageable physical limitations more difficult. This doesn’t necessarily mean that someone’s mental health has suddenly deteriorated. Sometimes it means they are finally processing experiences and losses that they previously had little opportunity to examine.

Can Professional Counselling Help?

For some people yes, it can. Counselling cannot reverse spinal cord damage or remove the practical difficulties associated with disability.

What it can provide is a confidential environment in which someone can explore the emotional consequences of what has happened to them. This might include discussing:

• The trauma surrounding diagnosis and treatment
• Grief for abilities that have been lost
• Anger and frustration
• Anxiety about the future
• Changes in independence
• Confidence and self-esteem
• Relationships and intimacy
• Loneliness or isolation
• Changes in career or life opportunities
• Fear surrounding future health problems

For somebody who experienced their tumour many years ago, counselling can still be valuable. Psychological recovery does not necessarily follow the same timetable as physical rehabilitation.

Finding the Right Counsellor

Not every counsellor will understand the complexities of neurological disability.

Where possible, it may be helpful to find a counsellor, psychotherapist or psychologist who has experience of areas such as:

• Spinal cord injury
• Neurological conditions
• Acquired physical disability
• Chronic illness
• Rehabilitation
• Medical trauma
• Long-term pain
• Loss and adjustment

The objective should not simply be to persuade somebody to “accept their disability”. Acceptance is much more complicated than that. A person can acknowledge that their spinal cord has been permanently damaged while still wanting to improve their mobility, maintain independence, pursue relationships, work, travel and enjoy their life. Those positions are entirely compatible.

Counselling Is Not an Admission of Failure

There can still be a misconception that seeking psychological support means someone isn’t coping. The opposite may be true. A person may have spent decades adapting to neurological disability, overcoming practical difficulties, and presenting themselves as resilient to everyone around them.

Eventually they may recognise that surviving and adapting does not necessarily mean they have emotionally processed everything that happened. Sometimes counselling provides an opportunity to say things that are difficult to say elsewhere:

“I am grateful to have survived, but I am also angry about what happened.”

“I have adapted, but there are things I still miss.”

“I have built a life, but I can still wonder what my life might have been without the tumour.”

Those thoughts don’t make somebody ungrateful or weak. They make them human.

Looking Beyond Physical Rehabilitation

Treatment for spinal cord tumours understandably concentrates on removing or controlling the tumour and preserving as much neurological function as possible. Rehabilitation then focuses heavily on physical recovery. But the consequences of a spinal cord tumour can last for decades.

Psychological wellbeing deserves to be considered alongside mobility, pain management, bladder and bowel management, physiotherapy, and other aspects of long-term rehabilitation. There may never be a point where somebody completely forgets what happened to them.

The aim instead may be to reach a position where the tumour and its consequences remain part of their story without becoming the whole story.

For some people, professional counselling can be an important part of reaching that point.