Sexuality in the Context of

Chronic Illness
Chapter 20
CSL 6794
• Chronic Illness often requires those afflicted
and their partners to cope with restrictions
and/or changes in their sexuality and so alters
the meaning and significance of their sexual
experiences.

• Research in the area of sexuality in the context

of chronic illness has probably been hindered
by a societal taboo that supports the idea that
patients with a chronic disease are not “Sexual
beings.”
• Sexual dysfunctions as defined in the
DSM do not adequately encompass the
range of sexual issues and concerns of
individuals with chronic illnesses.

• The situation in which someone is

sexually unhappy but has no apparent
sexual dysfunction is referred to as
“sexual dissatisfaction.”
 Classification of sexual problems
affecting individuals with chronic
illness
1. Disruption in the experience of sexual
pleasure:
a. Due to physical factors
b. Due to emotional factors

1. Disruption of the sexual relationship

The relationship suffers because of the illness
3. Sexual adjustment problems
The sexual relationship suffers from
the consequences of the disease
4. Practical sexual problems
Incontinence, fatigue, etc.
5. Disruption in sexual development
A disease may interrupt or interfere
with a crucial stage of sexual
maturation.
 Psychological Well-Being
Acceptance
• The extent to which patients experience
psychological distress is dependent on the extent
to which they succeed (or fail) in accepting the
disease as a part of their lives.
• Acceptance of the chronic disease is a process in
which patients come to accept not only the
diagnosis but also the course and treatment
regimen of the disease, including expected
complications and limitations.
Body Image:
A chronic illness will often give rise to questions
about one’s own attractiveness.

Distinctions:
Changes in appearance
Changes in functioning
Changes in incontinence
Self-Esteem
In addition to the impact on attractiveness, the
limitations imposed by the disease (e.g.,
immobility, fatigue, pain) may require a
patient to surrender some of his or her
responsibilities and tasks to the partner, which
may seriously affect the patient’s self-esteem.
Mood Disorder:
A chronic disease often compels people to make
changes in their identity, inducing a shift in
priorities and necessitating finding new
meanings in their lives.
Patients with chronic diseases of development
disorders, including depression and anxiety
disorders.
It has been estimated that depression and
anxiety disorders are 1.5 to 4 times more
common in people with chronic disease.
 Relationship Factors
• The individual who opts for an ill partner
accepts the “person-with-the-disease.”
• When the diagnosis of a chronic illness is
made in someone in an existing
relationship, the couple is confronted
with something unexpected, something
for which no one could prepare
him/herself.
• Illness requires both partners to confront
some grief and mourning work –to say
goodbye to the old body and/or the healthy
partner.

• But also high adaptability to the new situation

with changed responsibilities and roles (sexual
and otherwise).
• Caring for a partner with an illness
involves a loss of personal freedom
and time, which may lead to the
experience of a “limited life.”
• Partners who are well frequently
report that they do not dare discuss
their own concerns with their
partners lest they hurt them.
• Sometimes patients and/or partners
use the chronic illness as an ability or
justification to end an existing
unsatisfying sexual relationship

• Sometimes chronic disease is the

starting point of an extramarital
affair.
Breaking the Conspiracy of Silence
• Patients remain silent out of shame or fear of
rejection.
• Professionals remain silent for several
reasons: fear of not being able to answer
eventual questions about sexuality or a belief
that it is not necessary to talk about sexuality
if the patient does not ask or when the patient
has no part
 Ramakers and Jacobs (2008) describe
four states typical of many couples:
• Stage 1 – The first is a phase of absence, in which
patient and partner are not thinking about
sexuality.
• Stage 2 – Phase of uncertainty about sexuality
• Stage 3 – Phase of sexual opportunities during
which partners try to reshape their sexual
relationship
• Stage 4 – a phase of sexual stability in which a
new – active or inactive – homeostasis is
achieved.
 Relevant questions might include…
• Are the sexual dysfunctions and/or impaired
sexual experiences
– The direct result of physical aspects of the disease
(e.g., ED secondary to Peyronie’s Disease)
– The indirect result of physical complications of the
disease (e.g., paralysis, pain, etc.)
– The indirect result of illness-related pyshcological
mechanisms (e.g., depression, anxiety, low self-
esteem)
– Iatrogenic in origin (e.g., due to surgery, medication,
etc.)
• Are there any other relevant factors resulting
from the disease such as physical appearance,
cognitive disturbances, impaired fertility, that
may affect sexual functioning and/or sexual
experiences?
• Were there already disturbances in sexual
functioning and sexual experiences before the
onset of the chronic illness?
– Premorbid sexual functioning is the best indicator
of the possibility or quality of sexuality after the
diagnosis or treatment of an illness or disability.
• Because not every sexual dysfunction is
perceived as problematic by patients and their
partners, it is important to ask for whom the
dysfunction really is a problem.
Pg. 445
 In order to help couples determine what is still
possible sexually, it may be necessary in the
course of treatment to:
1. Provide psychoeducation about how this
illness or disability may affect sexual
functioning and sexual experiences.
2. Address negative attitudes
3. Explore how the physical limitations due to
the illness can be overcome
4. Be attentive and seek solutions for relational
tensions.