Psychological impact of chronic

and terminal illness

Course Title: Health Psychology | Regular Session 2022
Course Code: Psy-2031
Course Incharge: Ushna Zahid

Learning Objectives
● Develop understanding of psychosocial factors involved in chronic and terminal illness
● Explore the topic of grief: not the grief following the death of a loved one but the type of
grief chronic and terminal illness brings up

Summary
Chronic illnesses continuously bring up new losses. They involve dealing with grief of identity
loss, loss of favorite activities, loss of occupational and relational functioning. When symptoms
flare up or when the physical health worsens even more, it can bring waves of sadness.
According to Kubler-Ross, people with terminal illness go through following five stages after
they are diagnosed: denial, anger, bargaining, depression and acceptance

Chronic Illness

Chronic illnesses have disease-specific symptoms, but may also bring invisible symptoms like
pain, fatigue and mood disorders. Pain and fatigue may become a frequent part of your day.
Along with your illness, you probably have certain things you have to do to take care of yourself,
like take medicine or do exercises. Keeping up with your health management tasks might also
cause stress.

Physical changes from a disease may affect your appearance. These changes can turn a
positive self-image into a poor one. When you don't feel good about yourself, you may withdraw
from friends and social activities. Mood disorders such as depression and anxiety are common
complaints of people with chronic conditions, but they’re extremely treatable.

Chronic illness can also influence your ability to work. You might have to change the way you
work to cope with physical limitations. If you aren’t able to work, you might have financial
difficulties.

If you’re a homemaker, your work may take much longer to do. You might need to ask for help
from your spouse, a relative, or a home healthcare provider. As your life changes, you may feel
a loss of control, anxiety, and uncertainty about the future. In some families, there could be a
role reversal where people who were able to stay at home must return to work.

Stress can build and can shape your feelings about life. Long periods of stress can lead to
frustration, anger, hopelessness, and, at times, depression. This can happen not only to you,
but also to your family members. They’re also influenced by the chronic health problems of a
loved one.

Sources of stress:

● Chronic illness.
● Uncertainty about the future.
● Unpredictability of the disease.
● Disability.
● Financial difficulties.

Stress symptoms:

● Irritability and difficulty in relationships.

● Anxiety, tension, sadness.
● Loss of interest in things you once enjoyed.
● Disturbed sleep.
● Fatigue.
● Body aches and pains
● Cognitive issues.

Terminal Illness
Patients may react in 1 of 5 possible ways to the diagnosis of terminal illness: denial (“It must be
a mistake”); despair or depression (“Nothing will help”); anger (“I do not deserve this”); acute
anxiety (“I am a nervous wreck”); or fighting determination (“I will beat this”). Many individuals
display a combination of these reactions. All patients experience fear. These include the fears of
dying alone, not getting to say goodbye, leaving family members without a provider, loss of
independence, and being a burden to their families and friends, as well as sorrow about things
they will never be able to do. Worries about family members are particularly acute. The negative
psychological effects of a terminal diagnosis include anger, denial, insomnia, depression,
anxiety, and substance abuse. The patient’s family also deals with painful emotions when their
loved one is diagnosed with a terminal illness. There will be many occasions when they will
have to adjust to losses resulting from the disease. When the disease enters a terminal phase,
patients and their family can experience intense anticipatory grief. Sometimes, the family might
try to cope with this stress by emotionally distancing themselves from the patient.

Grief

Grief is the response to loss

Grief takes countless forms: it is experienced in limitless ways.
Grief in chronic illness: loss of function, loss of identity (and the new role of being a patient),
changed body image, change in relationships (their partner might have to take a caregiver role
which might cause resentment)
Bereavement is grief that involves the death of a loved one.

People may go through many different emotional states while grieving.

Grief symptoms may present themselves physically, socially, or spiritually. Some of the most
common symptoms of grief are: Crying, Headaches, Difficulty Sleeping, Questioning the
Purpose of Life, Questioning Your Spiritual Beliefs (e.g., your belief in God), Feelings of
Detachment, Isolation from Friends and Family, Abnormal Behavior, Worry, Anxiety, Frustration,
Guilt, Fatigue, Anger, Loss of Appetite, and Aches and Pains.

Grief in Chronic Illness

The experience of chronic illness is invariably one of accruing myriad losses, the depth and
breadth of which depend on the severity of the illness and the limitations it imposes. Depending
on the nature of the illness, these losses may include comfort, sexual function, career, income,
self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control,
independence, mental health, hope, dignity, and certainty. A loss of body function or body parts
may lead both to a diminished ability to perform tasks, hobbies, or activities of daily living and
derail an established career or prevent the fulfillment of an aspiration. This may be magnified
exponentially when illness takes away individuals’ abilities to engage in activities they perceive
as essential to their lives. An athlete’s chronic illness, for example, may sideline a promising
future that he trained for since childhood. A woman who expressed herself through the visual
arts may be devastated by severe vision impairment. A mother with unrelenting back pain may
be unable to care for her children. Similarly, a loss of body parts—for example, for a woman
who has undergone a mastectomy or whose hair falls out as a consequence of chemotherapy—
can disrupt someone’s sense of self.

The loss of function, aggravated by the loss of status or identity, may diminish self-esteem and
fracture body image, which in turn fuels anxiety and depression. Because chronic illness can
strip away many of the characteristics that form identity at the same time it causes disability and
loss of livelihood, the totality of the losses is potentially enormous. Since these losses aren’t tied
to one event but are multiple and repetitive, the ill person may live with perpetual grief, known
as chronic sorrow or sadness. The most prominent component is fear, according to Tecala, who
says the chronically ill may fear pain, disability, recurrence, and death.
They also may live with a constant dread of rejection by loved ones. Many chronic illnesses put
a severe strain on relationships. It’s not uncommon for the well partners to become the
caregivers, which creates an imbalance in roles. Where before they might have been equal,
now one is having to help the other get dressed or perform other activities of daily living. The
result is that the well partners become more like parents or nurses, which not only detracts from
the relationships, but also may cause resentment, which in turn may lead to irritability or
frustration and a lack of communication.

Helping them regain some sense of control and mastery over their lives. they are still valuable,
they still have something to contribute, and can still be very active participants in their lives. The
soldier who lost a leg, for example, may be helped to accept a prosthesis and become
instrumental in helping other soldiers cope with their injuries. The dancer who, as a result of
injury will never dance again, may uncover a long-repressed desire to be a writer. The focus
can’t be on what was, but on what can still be.

Well-meaning individuals, whether friends and family or health care providers, may compound
the difficulty. Some, for example, may try to add a helpful perspective by saying, “It could be
worse” or “You look fine,”—statements that invalidate a person’s physical and emotional
suffering. “The notion of ‘it could be worse’ translated into ‘you could be dead’ is a big
roadblock,” Kane says. “There is a lot of material out there about positive thinking, which in its
own right has its own merits and can be useful. But when statements like this are made or not
made but used as a viewpoint, it is very dismissive of the pain the person experiencing this type
of grief is trying to manage. Maintaining a stance with someone that things could be worse is not
only unhelpful but also minimizes and dismisses the person’s right to have their feelings.

Grief in Terminal Illness:

In terminal illness, the grieving process often starts before the death, it is called anticipatory
grief. According to Kubler-Ross, people with terminal illness go through following five stages
after they are diagnosed:
1. Denial – The first reaction is denial. In this stage, individuals believe the
diagnosis is somehow mistaken, and cling to a false, preferable reality.
2. Anger – When the individual recognizes that denial cannot continue, they
become frustrated, especially at proximate individuals. Certain psychological
responses of a person undergoing this phase would be: "Why me? It's not fair!";
"How can this happen to me?"; "Who is to blame?"; "Why would this happen?".
3. Bargaining – The third stage involves the hope that the individual can avoid a
cause of grief. Usually, the negotiation for an extended life is made in exchange
 for a reformed lifestyle. People facing less serious trauma can bargain or seek
compromise. Examples include the terminally ill person who "negotiates with
God" to attend a daughter's wedding, an attempt to bargain for more time to live
in exchange for a reformed lifestyle or a phrase such as "If I could trade their life
for mine".
4. Depression – "I'm so sad, why bother with anything?"; "I'm going to die soon, so
what's the point?"; "I miss my loved one; why go on?"
During the fourth stage, the individual despairs at the recognition of their
mortality. In this state, the individual may become silent, refuse visitors and
spend much of the time mournful and sullen.
5. Acceptance – "It's going to be okay."; "I can't fight it; I may as well prepare for it."
In this last stage, individuals embrace mortality or inevitable future, or that of a
loved one, or other tragic event. People dying may precede the survivors in this
state, which typically comes with a calm, retrospective view for the individual, and
a stable condition of emotions.

How to talk about death with a loved one diagnosed with terminal illness:
Talking about death is often difficult. Your own anxiety, sadness, and discomfort may make the
words choke in your throat.

But clinicians who work with people with a terminal illness point out the following:

● Some crave reassurance. Some people at the end of life are comforted by the
thought that they will be embraced, not abandoned, no matter what happens.

● Some want to talk. They may tire of keeping up a good front or talking around a topic
that looms so large that every other conversation strikes false notes.

● Some are afraid—and want empathy. They may be stifling their own numerous fears:
leaving loved ones, losing control, becoming a burden, and leaving tasks and plans
unfinished. Many people dread a painful death or the reflected fears of others.
Sharing such fears and expressing beliefs about death can help people feel less
overwhelmed and alone. It can also diminish physical pain, which is aggravated by
fear.

Broach the topic gently: Elisabeth Kübler-Ross, psychiatrist and author of the book On Death
and Dying, describes conversations that start with the simplest question: “How sick are you?”
While you may be too close to reasonably make that inquiry, there are other questions you can
ask:

● What do you worry about?

● How can I help?
● Is there anything you want to talk about?

Try not to rebuff tentatively expressed fears with hearty assurances, such as:

● That’s a long way off.

● Of course you’re not a burden.

It might help instead to ask specific questions. Depending on your loved one’s comfort level and
receptiveness to the topics, questions you could ask include:

● What are you thinking about?

● What would be a good death?

Sharing your own thoughts on the nature of a good death may help.

Ask a doctor to help: A doctor’s reassurance about how physical symptoms might unfold and
how pain will be handled can be invaluable. Some doctors can ask gently about fears, as well.
Realize, though, that it’s not unusual for doctors (and nurses) to shy away from talking about
death. Some feel determined to try everything and view death as a failure. Being human, they
have their own fears and discomfort to deal with, too.

Let it go: Kübler-Ross noted that people slip into and out of denial during the course of illness
and even during a single conversation. Sometimes it’s too hard to think or talk about death. Let
your loved one end conversations that feel too difficult. Allow them to hold on to comforting
thoughts and fantasies.

Pandemic: Fear of getting sick, Loss of jobs, Relationships, Social distancing,

Socioeconomic factors, Uncertainty, grief and anxiety
References:

https://www.pharmacytimes.com/view/counselingterminalillness-0810

Smith, N. (1990). The impact of terminal illness on the family. Palliative Medicine, 4(2), 127–135.
doi:10.1177/026921639000400211

https://www.socialworktoday.com/archive/070714p18.shtml#:~:text=Since%20these
%20losses%20aren't,disability%2C%20recurrence%2C%20and%20death.

https://www.helpguide.org/harvard/when-a-loved-one-is-terminally-ill.htm