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Sean M. Healey & AMG Center for ALS
ALS research at Mass General
The ALS Multidisciplinary Clinic in the Healey Center for ALS at Mass General supports living better.
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:
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.
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.
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