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The sexual experience: the lived experience of men who have been diagnosed with multiple sclerosis

Shaniff Esmail, Associate Professor; Meghan Leakey, BA; Jane Huang, MScOT
Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta

Way Ahead 2008;12(1):10-12

Introduction

This article is the third in a series of articles that explore the experience of couples in which one partner has been diagnosed with multiple sclerosis (MS). This article explores the second phase of the study, and focuses on couples in which the male partner was diagnosed with MS. More specifically, the male partner's experience of the relationship and how it has changed since his diagnosis. The overall purpose of the study is to understand the 'lived experience' of couples. It focused on the impact of MS on couples with respect to their sexual relationships, including coping strategies they used or developed to manage the impact.

MS significantly affects sexual function in men. Zorzon et al found that 92.1% of men with MS reported sexual dysfunction, compared with 21.9% of men with other chronic diseases¹. Foley stated that sexual problems in people with MS can stem from primary, secondary, or tertiary sources². Primary sexual dysfunction stems from physiological impairments directly due to demyelinating lesions in the spinal cord and/or brain. In men, symptoms include impaired genital sensations, inability to achieve or maintain erections, and decrease or loss of ejaculatory functions. Generally, erectile dysfunction is the most significant sexual dysfunction in men with MS^2-5.

Secondary sexual dysfunction refers to non-sexual physical changes, such as fatigue, spasticity, bladder and bowel dysfunction, and pain; dysfunctions which may affect an individual's ability to enjoy sexual activities. Research has shown that fatigue and bladder dysfunction are the most common nonphysical symptoms among men with MS⁵. Fatigue interferes with sexual interest, and the ability to initiate or continue sexual activities. Therefore, compared to muscular weakness and loss of sensation, fatigue could impede sexual relationships more in individuals with MS².

Tertiary sexual dysfunction refers to psychosocial and cultural issues that interfere with sexual satisfaction or performance. Role changes due to disease, low self-esteem, and depression could all result in sexual dysfunction.

To date, research on the sexuality of individuals with MS has predominantly focused on the physical aspects of sexuality, such as performance and coitus^{3, 5, 6}. However, coitus is not always the most important source of sexual satisfaction^{7, 8}. According to the views of partners of individuals with MS, intimacy and willingness to engage in sexual activities were rated as more problematic than the physical aspects of sexuality¹¹.

Methods

Information for the study was gathered through conversations with four separate couples. In all but one, the male partner had been diagnosed with MS after the relationship was established. All couples were heterosexual, and all but one couple was married.

Findings

Data analysis revealed four major themes for the male partners:

communication salvaged the relationship;
the sexual relationship was re-examined after their diagnosis;
traditional roles changed after diagnosis; and finally,
a partner's acceptance was seen as a major source of support.

All of the men participating in the study identified open and effective communication as the most important element in their relationships. Topics deemed important included: how MS affected the diagnosed individual, as well as how it affected their partners. Males also indicated the importance of open discussions with their partner, regarding concerns and issues which may arise, in order to resolve them together.

"The open relationship we have - the willingness of both of us to talk through any issues or concerns that we have - I think that's the biggest thing - to talk, talk, talk about everything, in order to work through things"

When there is a safe open environment for communication, both partners can address issues as they arise and are able to address any issue that is brought to the table.

"And to be so honest and open and so that you can feel close and you're not afraid to ask or to say what you need and what you don't need"

For some, improved communication enhanced their relationships after the diagnosis. Men have long been stereotyped as only wanting to satisfy their sexual desires with little regard for their partners' needs. The male participants in this study held different views. While they stated that intimacy and closeness were more important than intercourse, physical contact was essential for demonstrating feelings and expressing their love. A strong bond with their partners was perceived as more important than sexual activity; however, this perception differed from their beliefs prior to having MS.

Researcher's question: "what do you think is important in your sexual relationship?"... "just the physical contact - even if it is only cuddling and kissing, hugging"

All of the male participants reported that their sexual function was adversely affected by MS. Fatigue, lack of energy for sexual activity and decreased sensation were the most common symptoms reported. Their libidos were reduced and they experienced difficulties with having erections and ejaculating. Ultimately, the frequency of sexual activity decreased after the diagnosis of MS.

The majority of male participants indicated that physical changes due to MS altered their traditional roles in their families. They could not perform physical activities like they used to, and their status changed from being seen as strong capable men to someone who required care. One male participant stated that his wife became the breadwinner of the family and he felt frustrated that he could not carry out the 'man's role' for his family. The men felt they became a burden to their partners. The combination of changes often resulted in lowered self esteem and despair.

"She helps me to get into bed and to get out of bed sometimes, but, well, I do have home care come in to help me with a lot of things, and we are working on getting more help for me, because I would like to have home care do more for me. I don't want my partner to do things for me. I want to have our relationship just for us. I don't want her to be my caregiver. I want us to have a relationship"

The traditional roles within the sexual relationships also changed. Males reported that their partners became more active and began initiating sexual activities. Unlike the familial role change, this change was positive for the men, as it made them feel accepted as sexual partners.

The majority of the men expressed appreciation for their partners' acceptance and understanding of MS, and saw this as the major source of support in their relationships. Being accepted as sexual partners helped them establish confidence and strengthened their sexual relationships.

"I think what happens is that when your partner, especially you know like my wife, will put in more effort... it helps me not only psychologically but physically - I know that she's in the position where she wants to make love, that I know that it helps me"

Some men asked their partners to leave the relationship when they were diagnosed or when the disease worsened, as they did not want to become a burden to their partners. Other male participants reported they felt fortunate that their partners were willing to maintain their relationships following their diagnoses.

Conclusion

Research findings indicated MS had a significant impact on the sexual relationship of the male participants. Specifically, in terms of physical function, fatigue was the most commonly reported symptom. Male participants reported they were forced to rely on their female partners for personal care, including transfers and dressing, and that their motivation for sexual activity decreased. Male participants stated they believed any intimate contact would lead to sexual intercourse, and therefore began to avoid all forms of sexual contact due to the fear that they may not be able to 'perform'.

Overall, communication was indicated by all participants as a key component to a healthy and strong relationship. Understanding the impact of MS on each individual, as well as on the relationship from each partner's perspective, and being able to negotiate needs and expectations was vital in maintaining a sense of satisfaction within the relationship. As indicated previously, close partner relationships play an important role in life satisfaction^{9, 10, 12}. Based on the results of this study, and supported by previous research, it appears that physical dysfunction is not a major barrier in maintaining a close partner relationship. Moreover, recognizing and accepting the limitations of one's partner, combined with the ability to communicate effectively, is a key component to establishing not only healthy sexual relations, but also helping to achieve life satisfaction.

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