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According to the Centers for Disease Control and Prevention, chronic disease affects over 133 million Americans, representing more than 40% of the population of this country. That number is projected to be an estimated 157 million, with 81 million having multiple conditions by this year. More Americans are living with not just one chronic illness, such as diabetes, heart disease, cancer, or depression. Experiencing chronic illness can be earth-shattering. Individuals who are chronically ill often experience extreme emotional distress. The ability to engage in occupational, social, and recreational activities can be limited and can have a devastating negative impact on one’s sex life.
Sexuality in a relationship involves a wide mix of feelings and emotions and when both the individual and their partner are together battling a disease, the future of their intimate lives becomes uncertain and both partners suffer the loss. The ill partner feels shame about the changes in their sexuality. Suffering from a chronic illness may mean not only restricting sex but can also reduce the capacity to become aroused. This may be the most difficult part of a chronic medical illness. Both partners may feel less attractive, less confident, and concerned about how their body works and adapts to the illness. Both partners may become plagued with anxiety due to the worry, reduced sexual activity, and fear of the future.
When experiencing a chronic illness, such as fibromyalgia, multiple sclerosis, diabetes, heart disease, cancer, and other autoimmune diseases, some changes may be physical, such as the changes in one’s body; side effects from medication, sexual dysfunction, fatigue, and pain. The sick partner may experience psychological changes like depression and anxiety. Most of all, there is constant fear around sexual ability and sexual performance. A common illness that presents in my office is Multiple Sclerosis.
Multiple Sclerosis (MS) is a demyelinating disease to the central nervous system with the onset generally during adulthood. The consequences of demyelination include cognitive, motor, and sensory dysfunction, depending on the area of the brain or spinal cord involved. Such dysfunction may result in a variety of alterations in sexual function in people with MS. Sexual dysfunction in MS includes temporary or long-term disinterest in sex, inability to experience orgasm, and difficulty engaging in sexual intercourse because of the physical changes with MS (e.g., spasticity, fatigue, and muscle weakness). Sexual dysfunction may also include erectile dysfunction, decreased vaginal lubrication, fatigue, depression, anxiety, decreased sensation in multiple areas of the body, tremor, and cognitive changes.
Fatigue, one of the most common and most disabling symptoms of MS, can lead to decreased participation in sexual activity. People with MS may fear that the exertion of sexual activity may cause a progression of the disease. They may mistake the sedation experienced after climax to weakness, and so needlessly limit their sexual activity. The healthy partner of the person with MS may fear that sexual activity will worsen the severity of MS and may avoid intimate physical contact. Decreased desire and arousal is associated with the cerebral plaques and also with depression. Cognitive changes (apathy and confusion) may have a profound effect on the quality of life, including sexual functioning. Sexual dysfunction often occurs in combination with bowel and bladder incontinence. Those individuals may fear the loss of bowel or bladder control during sexual activity. Therefore, sex may be avoided.
MS can interfere directly or indirectly with orgasm. In women and men, orgasm depends on nervous system pathways in the brain (the center of emotion and fantasy during masturbation or intercourse), and pathways in the sacral, thoracic, and cervical parts of the spinal cord. If these pathways are disrupted by plaques, sensation and orgasmic response can be diminished or absent. In addition, orgasm can be inhibited by secondary (indirect physical) symptoms, such as sensory changes, cognitive problems, and other MS symptoms. Tertiary (psychosocial or cultural) orgasmic dysfunction stems from anxiety, depression, and loss of sexual self-confidence or sexual self-esteem, each of which can inhibit orgasm.
Muscle spasticity which is common in all individuals with MS may be triggered during sexual activity. Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. The spasticity of the hip adductors may be severe enough to be a barrier to sexual intercourse. Nighttime spasticity, frequent nightly trips to the bathroom, or nighttime incontinence can lead couples to abandon sharing the same bed and even the same bedroom to allow the healthy partner a good night’s rest. MS can impair the emotional and sexual intimacy that is fostered by the couple’s sleeping together.
Certain strategies may minimize many of the difficulties experienced by people with MS. Here are my recommendations in reclaiming a sex life that works.
When fatigue is a major complaint, individuals can plan a sexual activity for the morning when people with MS generally have more energy. It is perfectly fine to plan sex. It does not have to be spontaneous.
Keeping the environment cool may also improve energy in people who are heat sensitive; however, cool temperatures may aggravate spasticity. Because the spasms of hip adductors tend to cause the most problems, using side or rear entry may eliminate this barrier if the couple wishes to have penetrative sex.
Couples also may alternate forms of sexual activity, such as oral sex and mutual masturbation. Remember, sex does not have to be about penetration… it is only one form of sex.
Bladder incontinence can be managed by emptying the bladder immediately before or after sexual activity.
For individuals with bowel incontinence, sexual activity can be planned so that it precedes intestinal stimulants such as coffee and meals.
Decreased vaginal lubrication can be treated with water-soluble lubricants, and dysesthesias may be relieved with medication for nerve pain.
Vaginal lubrication is controlled by multiple pathways in the brain and spinal cord, similar to the erectile response. Decreased vaginal lubrication can be addressed by using generous amounts of water-soluble lubricants, such as K-Y Jelly, Replens, or Astroglide. It is not advisable to use petroleum-based jellies (e.g., Vaseline ) for vaginal lubrication due to the greatly increased risk of bacterial infection.
Uncomfortable genital sensory disturbances, including burning, pain, or tingling, can sometimes be relieved with gabapentin (Neurontin ), carbamazepine (Tegretol ), phenytoin (Dilantin ) or Divalproex (Depakote) or by a tricyclic antidepressant such as amitriptyline (Elavil). I consult with medical providers almost daily in my practice about the medications my clients are prescribed. These are common medications I see prescribed.
The decreased genital sensation can sometimes be overcome by more vigorous stimulation, either manually, orally, or with the use of a vibrator or other sex toys. Exploring alternative sexual touches, positions, and behaviors while searching for those that are the most pleasurable is often very helpful. Sexual activity is all about exploring and this can make it exciting.
Masturbation with a partner observing or participating can provide important information about ways to enhance sexual interactions.
Remember, sex is about pleasure, not performance. When so many changes in a couple’s life occur due to chronic illness, a satisfying sex life can be one way to feel healthy and normal. Lastly, we know that chronic illness can have profound negative effects on a relationship and sexual satisfaction, and with a life restricted by pain and illness, sex can be a powerful source for comfort, pleasure, and intimacy.
