Sex & CFS
By Patricia A. Fennell, M.S.W., L.C.S.W.,
What is the most important concern that patients with chronic
illness are least likely to talk to their doctors about? It just might be
Sexual issues affect people on a daily basis, but they are
often reluctant to discuss them with their physicians or other health care
professionals. For patients with CFS, many of whom have numerous other issues
and symptoms to address during a limited doctor’s visit, it’s easy to understand
why sexual concerns take a back seat to other issues.
Recently, however, at Albany Health Management Associates
Inc., the organization I founded to address issues related to the growing
epidemic of chronic illness, an increasing number of patients want to discuss
some of the sexual issues they’re dealing with in their private lives. It’s
heartening that people seem to be feeling freer to talk about a topic that is so
laden with taboos and sensitivities.
American culture is full of mixed messages about sex. On the
one hand, our culture is very conservative about issues of sexuality and
reluctant to discuss them openly. In contrast, we have a billion-dollar sex
industry that—whether we like it or not—brings sex into our lives on a daily
basis. This cultural dichotomy between the pervasiveness of sex and the taboos
that still permeate American society makes sexuality a complicated subject. When
chronic illness gets added to the mix, the issue becomes even more complex.
When patients come into our office to talk about sex, they
never say, “We’re having too much sex. Can you help us?” What they tend to say
is, “We don’t have sex anymore,” or “We’re not having sex often enough.” Then we
begin to explore the details of what this means and examine the expectations of
each partner. We ask a variety of questions, such as “Who is the primary sexual
initiator?” and “Why do you feel the sexual relationship has changed?”
Why couples might be having less sex
Any couple may
stop having sex (or stop being as sexual as they want to be) for a variety of
reasons. When one person is chronically ill, a couple can be especially
The most common reasons these couples may not have sex are
physical ones. For people with CFS, sex can be painful. Patients may feel
exhausted and lack the energy for sexual interaction. Women may experience
vaginal pain or dryness during intercourse, and male patients may have trouble
maintaining an erection. Chemicals released during orgasm can actually help
relieve pain and improve mood, but the adrenaline release may also be
exhausting. Many patients with CFS, even if they have the energy to have sex at
a particular moment, may be concerned about the physical repercussions that can
occur in the following 24 to 48 hours.
CFS sufferers or their partners may experience a lack of
sexual desire for a host of reasons. Sometimes the healthy partner stops
initiating sexual contact because he (or she) feels protective. One man whose
wife suffers from CFS and fibromyalgia admitted, “I’m afraid I’m going to hurt
her.” In a relationship where one person is ill, that partner may be perceived
as more vulnerable, and the healthy person often takes on the role of caretaker.
This can change the power balance in a relationship, which in turn changes the
sexual balance. People who are chronically ill may experience a somewhat
childlike state as a result of the extreme physical and emotional changes
inherent in illness. While this is a normal psychological reaction, it often
complicates the sexual relationship when the “adult” or “caretaker” in the
relationship has trouble reconciling this role with that of sexual
Conversely, the person who is ill may feel guilty or confused
about wanting sex or initiating sexual activity when fulfilling other roles in
the household or relationship is problematic. It’s hard to explain to your
partner that you feel like having sex when you don’t feel like preparing a meal
or going to the grocery store. In fact, patients and their partners may
experience a wide range of emotions about the change in their roles and the
different dynamic of their relationship. Patients may experience feelings of
guilt because they aren’t able to do what they could before, or because they
believe their limitations are a burden to loved ones. At times their partners
may feel resentful that their own needs are not being met, or that they must
take on additional responsibilities the ill person is no longer able to manage.
Both partners may feel angry, even quite angry, that their formerly healthy,
active sex life is just one more thing they have lost to CFS. Such anger, guilt
and resentment—whether conscious or unconscious—can wreak havoc on a couple’s
Strategies and solutions for rediscovering
The psychological and interpersonal issues involved in a sexual
relationship can be difficult, but they become even more problematic when they
are unspoken. Couples can improve their sexual relationships by communicating
openly about their concerns. If a lack of desire is an issue, explore the
reasons why one or both partners may feel disinterested, or why there might be a
hesitation to initiate sexual contact. Perhaps you’re self-conscious about the
changes in your body due to CFS, or you may be worried about disappointing your
partner. Often the very act of speaking candidly about fears and concerns is
enough to bring acceptance and reassurance, to rebalance the power in the
relationship and to allow sexual contact to be resumed.
How can a patient with CFS think about feeling sexy in bed
when sometimes even getting out of bed is a huge challenge? It certainly isn’t
easy. Sometimes patients can look for “windows of opportunity” when energy is
higher or symptoms less severe. It may help to have rituals that you know make
you feel sensual or romantic—such as taking a long, hot bath or practicing
meditation or relaxation. It may help to create special times that are separate
and distinct from daily caretaking routines. For example, an ill partner may
require assistance in doing the laundry or other routine tasks, but the couple
can still manage to create an adult oasis where they engage as equal partners in
the sexual relationship.
Like any other activity made more difficult by CFS, sexual
activity may require the use of pacing techniques. Setting aside time for sexual
intimacy with your partner—and time for recovery from any exacerbation of
symptoms afterward—is possible with some creative scheduling and reprioritizing
of other tasks. Many people with CFS set aside a date night and “rest up” for
it, both before and after. If this seems to lack spontaneity, remember that even
people who don’t have a chronic condition often must plan time for sexual
It’s also essential to address the physical concerns that
affect your sexual relationship. If sex is painful, talk to your doctor. There
are a variety of products that can help with lubrication and sensitivity. New
treatments have been developed that can enhance sexual desire and response. In
addition, a lack of desire may be influenced by medications you’re taking to
treat CFS. Many drugs have an impact on libido, lubrication or the ability to
maintain an erection or achieve orgasm. Discuss these questions with your
doctor, who can help you explore ways to improve sexual function.
Couples can discover new positions and other techniques to
reduce pain and enhance pleasure. Those who cope with chronic illness often need
to explore different ways to be sexual, as sexuality naturally evolves and
changes throughout the life span. Just as people have been taught to integrate
birth control into their sex practices, and to integrate protection from
sexually transmitted diseases, it’s natural that our sexual activity would
evolve based on our physicality, which changes as we age. Your partner might be
big or small, tall or short, heavy or light. All of these might be
characteristics that can change your sexual practice.
If thinking about these issues or beginning to talk about them
with your partner is too difficult, or if you’re concerned about how to do this,
it may be a good idea to find help. Talking to a counselor or therapist about
these issues on an individual or couples basis can be very helpful.
Sex and the four phases
It’s also important to note
that the sexual needs and experiences of a patient in the early phases of the
chronic illness experience can be considerably different from those of someone
who has been ill for several years.1 Research supports the concept
that four phases of adaptation occur in chronic illnesses like CFS2,
and these phases and their characteristics pertain to our sexual selves as well
as other aspects of our lives. Clearly, they also affect the partners of people
For example, in the first phase (crisis), CFS patients are
usually not interested in sex; they are in crisis and understandably overwhelmed
with all the changes wrought by their illness. Partners are typically
understanding in this phase; they recognize the urgency of the situation and
want to help.
In the second phase (stabilization), some patients may have a
budding interest in sex again, but they may be unsure how to handle it. They
might wonder if they have the strength for sexual activity or fear that it might
worsen their symptoms. Partners in this phase typically react in one of two
ways. Some partners feel protective and, as referred to earlier, may have
difficulty reconciling a sexual role with one of caretaker. Others may feel
resentful or angry about the ongoing changes and limitations brought on by the
disease. “I want my old wife back” is a common sentiment for husbands of CFS
sufferers in this phase. If these issues and feelings are not addressed, sexual
intimacy can get removed from the relationship.
In Phase 3 (resolution), CFS sufferers may experience a
renewed interest in sexuality. Patients and their partners must learn to move
out of any unhealthy patterns developed in earlier phases and begin to negotiate
how and when to initiate sex. Learning to use pacing, regular rituals and other
strategies can make sexual intimacy possible and satisfying for people with CFS
and their partners.
During Phase 4 (integration), patients reintegrate a sexual
life that accommodates the physical and emotional changes caused by chronic
illness and begin to explore how to find a fuller expression of their sexual
selves. In this phase CFS sufferers learn how to be sexual beings who are also
ill, and they understand that these things are not mutually exclusive.
It’s still possible to appreciate our sexual selves despite
the additional challenges of chronic illness. CFS must be viewed as just one
more thing that we adapt to sexually. The need to make these accommodations
shouldn’t be seen as a failure, but simply as a necessary process of discovering
what works for a particular couple.
Sex doesn’t have to be a thing of the past just because you
PA. Managing Chronic Illness: The Four Phase Approach. John Wiley and
Sons Inc., New
York, NY: 2003
2 Jason LA, Fricano G, Taylor RR, Halpert J,
Fennell PA, Klein S, Levine S. Chronic fatigue syndrome: an examination of the
phases. Journal of Clinical Psychology 2000; 56(12): 1497-1508.
Sex and the single CFS sufferer
What if you’re single and you have a chronic illness?
When you’re dating someone new, issues that relate to your
illness will likely come up even before you enter into a sexual relationship.
And once you’re involved in a relationship, you handle your concerns about
sexuality as do married or
established couples. The
problem, if you’re single and suffer from CFS, boils down to how you talk about
How much disclosure is necessary and appropriate? This is a
common concern for anyone with a chronic illness who is dating. How much should
you share and when should you share it? It can be frightening to expose yourself
in this way, risking rejection or other upsetting reactions.
Many people disclose too much too soon. That can leave you
feeling naked or vulnerable, and you also risk overwhelming the other person.
Before sharing the details of your situation, try to get a sense of what your
new friend can handle. One good way to do this is to find out about the person’s
history. Rather than disclosing your health concerns right away, discuss other
personal topics that may reveal how comfortable your new friend is with sharing.
Try to learn what issues may be emotionally charged for that person and how he
or she deals with adversity. If there’s a history of illness in your friend’s
family, pay attention to how she or he has responded to it and coped with it.
Such knowledge can help you decide what to share.
Once you decide to begin revealing more about yourself and
your illness, test the waters by sharing something small. The response you
receive can help inform you about how the person may deal with more
extensive details of your illness.
How do you know when someone is handling disclosure about your
illness well? In all honesty, such knowledge develops over time. Some
individuals can give you a positive response initially—for fear of hurting your
feelings—and then withdraw later. Others may not know how to respond, or they
may find it difficult at first, and then grow more comfortable and understanding
of the situation.
Only you can judge whether someone may make a good partner and
whether he or she can cope with the challenges that are inherent in a life with
CFS. A good, caring partner is one who accepts you and your limitations and
shares the intimacy of facing life’s challenges together.
Patricia A. Fennell, M.S.W., is a clinician, researcher,
lecturer and the author of numerous books and articles, including The
Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life.
An innovator in the chronic illness and mental health fields, she created the
internationally recognized Fennell Four Phase Treatment™ approach to chronic
syndromes. For more information about Fennell’s work, visit her website at
http://albanyhealthmanagement.com. You may also join her for a session on sex
and chronic illness at the annual OFFER (Organization for Fatigue and
Fibromyalgia Education and Research) conference April 15 in
Salt Lake City.