Living with ALS: Sexuality and Intimacy

Sexual health and sexuality are important aspects of a person’s well-being, regardless of age, personal circumstances, or state of health. While most often associated with physical sexual relationships, sexuality is actually a considerably more complex aspect of our lives.

Sexuality is an issue for many people with ALS and their partners. Understanding how ALS affects sexuality is the first step to alleviating any problems with sex and intimacy that the disease may pose.

How ALS Affects Sex Life

Direct Effects on Sexual Activity

• Nerves and Muscles: Sexual function primarily involves the interplay of signals among sensory nerves, autonomic nerves, involuntary muscles (those not controlled by will), and the brain. To a lesser extent, voluntary nerves and muscles (those controlled by will) are also engaged during sexual activity. ALS has a direct effect on the voluntary nerves and muscles that enhance sexual experience. However, while these voluntary muscles are important, they are not the main source of sexual sensation or response.

• Respiratory Function: ALS can weaken respiratory function, making breathing more difficult and also making sexual activity a strain. Non-invasive positive pressure ventilation (NIPPV) can help but the equipment needed may create added difficulty during intercourse.

Indirect Effects on Sexual Activity

Beyond damaged nerves and weakened muscles, other ALS symptoms and some  medications may have an indirect impact on your sex life. Fatigue, lack of sleep, muscle spasms, muscle tightness, and decreased ability to communicate can all affect physical comfort as well as sexual desire. The onset of ALS can also affect self-image as a sexual being. Individuals who experience depression, anxiety, loss of self-esteem, diminished sexual confidence, or negative feelings about bodily changes brought on by ALS may experience diminished sexual function and a decline in intimacy. If you experience these feelings, counseling and therapy may help.

Impact on the Partner 

The partners of people who have ALS may also experience feelings and psychological symptoms that affect his or her intimacy and sexual desire. Grief, fear, stress, and depression are common symptoms among the partners and many, who are often also the main caregiver, may experience exhaustion and resentment over care duties. Combined, these feelings may affect sexual feelings and intimacy. Switching between the roles of lover and caregiver may also be difficult. Often, it is difficult for partners to talk about these issues with their loved one who has ALS.

Addressing Problems that Affect Sex and Intimacy

Communicating with Your Partner

The first step to addressing sexual difficulties is acknowledging them and understanding them. It is important to talk about these challenges with your partner. The inability to discuss sex and intimacy with your partner is often the biggest problem. Avoiding these issues can easily lead to an avoidance of sex and other intimate contact. Although it may be difficult to bring up the subject of sex with your partner, sharing fears and worries will help you better understand each other’s concerns. Confiding in one another often brings a couple closer and may help lessen or resolve your fears.

Your Healthcare Team Can Help

Talking to your healthcare team about sexual concerns is also helpful – they deal with these issues on a routine basis so you should  feel comfortable bringing these concerns up with them up. Your healthcare team can answer questions and address your concerns while also providing resources and possible treatments. The occupational and physical therapists can suggest ways to minimize discomfort and physical barriers to sexual activities as well as ways which help you conserve your energy. If negative feelings are interfering with your sense of intimacy with your partner, psychologists and other mental health professionals may be helpful. In many cases, depression is very treatable with therapy, medication, or a combination of both.

Redefining Sexuality

You may need to redefine sexuality to fit your new situation, which will continue to evolve with disease progression. Most couples have many ways of exploring sexual feelings with each other. If familiar sexual roles and positions are no longer possible, it may be helpful to talk to your partner about experimenting with new techniques. Again, communicating needs and desires to each other will often help you and your partner become closer and experience a deeper sense of intimacy. There are many books on exploring sexuality and intimacy which may be helpful, including some written specifically for people with physical challenges. Please see the resource list which follows.

Resources

Books

The Ultimate Guide to Sex and Disability, Second Edition
Mariam Kaufman, Cory Silverberg, and Fran Odette (Cleis Press: 2007)
This book is designed for people with a wide range of disabilities – from chronic fatigue, back pain, and asthma to hearing and visual impairment, spinal cord injury, and multiple sclerosis. Written by a physician, a sex educator, and a disability activist, the book covers aspects of sexuality and disability including building a positive sexual self-image, positions to minimize stress and maximize pleasure, dealing with fatigue or pain during sex, and finding partners.

Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled (and the People Who Care About Them) 
Ken Kroll and Erica Levy Klein (Bethesda, MD: Woodbine House, 1995)
This book is written by a married couple. Kroll has a neuromuscular disorder.

Not Made of Stone: The Sexual Problems of Handicapped People
K. Heslinga with A.M. Schellen and A. Verkuyl (Springfield, Ill: charles C. Thomas, 1974)

Sexuality & Disability
Maddie Blackburn (2002)

Sexual Concerns When Illness or Disability Strikes
Carol Sandowski (1990)

Sexual Function in People with Disability and Chronic Illness: A Health Professional’s Guide
Marca L. Sipski and Craig J. Alexander (Aspen Publishers Inc.: 1997)
This book addresses general sexual function, specific disabilities and illnesses, and treatment concerns.

Sexuality and Chronic Illness: A Comprehensive Approach 
Leslie R. Schover, Ph.D., and Soren Buus Jensen, M.D. (Guilford Publications, 1988)
This book reviews the basic skills needed to comfortably discuss sexuality with chronically ill patients, assess sexual problems through both psychological and medical approaches, and create a systematic treatment plan.

Counseling

American Association of Sex Education Counselors and Therapists (AASECT) 
Provides a list of certified sex therapists and counselors in your area.
Address: AASECT, PO Box 1960, Ashland, VA, 23005-1960.
Telephone: 804-752-0026
http://www.aasect.org/

Websites

Sexuality Information and Education Council of the United States (SIECUS)
Provides a bibliography of print and audiovisual materials related to sexuality and disability.
Address: SIECUS, 130 West 42nd Street, Suite 350, New York, NY  10036-7802
Telephone: 212-819-9770

The Sexual Health Network
Dedicated to providing easy access to sexuality information, education, mutual support, counseling, therapy, healthcare, products, and other resources for people with disabilities, illness, or natural changes throughout the lifecycle and those who love them or care for them.