The sexual experience: the lived experience of women whose partners have been diagnosed with multiple sclerosis
Shaniff Esmail, Associate Professor
Jane Huang, MscOT
Meghan Leakey, BA
Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta
Way Ahead 2008;12(2)86-9
Introduction
This article is the fourth 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 focusing on couples in which the male partner was diagnosed with MS. More specifically, the woman's experience of the relationship and how it has changed since her partner's diagnosis. The overall purpose of the study was to understand the 'lived experience' of couples. It focused on the impact of MS with respect to the couples' sexual relationships, including coping strategies they used or developed.
To date, research on the sexuality of individuals with MS has predominantly focused on the physical aspects of sexuality, such as performance and coitus [1-3]. However, coitus is not always the most important source of sexual satisfaction [4]. 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 sexuality [5].
Methods
Information for the study was gathered through conversations with four separate couples. In all but one couple, 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 women whose partners have MS:
- communication was the most important aspect of the relationship;
- the sexual relationship changed and intimacy became the priority;
- the women learned to deal with loss and sacrifice; and finally,
- the women took a protective caregiver role and embraced the disorder to protect their husbands/partners.
Similar to their male partners, all the women in the study felt that good communication was the foundation for maintaining their relationships. The women commonly expressed their feelings, and often took the lead in initiating communication with their partners. The women indicated that their partners used better communication skills and were more willing to openly express their needs after the diagnosis of MS:
- "…Lots of times we talk…we are brutally honest with each other…we're very expressive emotionally to each other…"
The female participants used communication to maintain and enhance their relationship. Overall, they felt communication improved after the diagnosis and realized that honesty was the key element, but they still filtered their communication.
The women were able to manipulate the conversation because they took the lead in the conversation in order to protect their partners. They chose the topics and avoided issues that could cause severe conflict or hurt. They hid some of their feelings from their partners and at times felt their partners also hid things from them.
All of the women in the study indicated that MS had a negative impact on their sexual relationship. Most of the participants still had sexual activities with their male partners. However, the frequency decreased after the diagnosis due to sexual dysfunction. This decreasing frequency and interest of sexual activities made the female participants feel frustrated and discouraged because it seemed like their partners were not attracted to them:
- "…I don't think he has much of a sex drive… So, sometimes I feel like he's not attracted to me or …I don't know if he's almost turned his own mind off because things don't function, so it's almost like he's blocked that out as an interest in his life now..."
To combat sexual dysfunction issues many of the couples tried to modify their sexual activities in order to 'catch the moment'. The women stated that having sex in the relationship was important; however, some felt that sex was still more important for their male partners. They participated in sexual activities in order to satisfy their partners' needs and to boost the men's confidence, especially after their sexual function became impaired.
For the female participants, a sexual relationship was established by physical intimacy and feeling needed. Losing intimacy frustrated them more than the decrease in sexual activity. Their goal for participating in sexual activities was to satisfy their male partners' needs instead of their own.
Most women stated they lost their friends, lives and freedom as their partners' MS progressed, which proved difficult to deal with. Often when going out with their partners they became apprehensive because they worried they would find themselves in a situation that they could not manage. Most of the women also reported they felt family and friends did not understand MS and seemed fearful.
The women felt they needed to sacrifice their own lives and freedom. To relieve stress, some of the women chose to get away from their environment temporarily in order to release tension between them and their male partners. Escaping the stressful environment and temporarily leaving day-to-day difficulties recharged their energy and made it easier to carry on.
In order to maintain their relationships, the female participants realized they must accept the disease, either willingly or unwillingly. They learned about the progression of MS and were cognizant of their partners' limitations. As the disease progressed and their own physical condition declined with age, some female participants became frustrated and felt guilty that they were no longer able to provide all the necessary care. They often felt guilty asking for help, taking time for themselves or having a few interests of their own.
- "…It was his diagnosis but it was our disease…"
Conclusion
Research findings indicated that MS had a significant impact on the sexual relationship of male participants, thus also affecting their partners sexuality. As men's sexual esteem decreased after changes related to MS, female partners took on a more active role in maintaining and enhancing their sexual relationship. Female participants reported living in a world of sacrifice. Additional roles and changes to traditional roles after the onset of MS caused some women to feel it was their responsibility to maintain and ensure survival of the relationship. They often gave priority to their male partners' needs and forced themselves to take ownership of their relationship, sacrificing their lives and freedom to help and protect their male partners dealing with the disease.
Although communication was reported as essential in the relationship, in which openness and honesty were two key elements, women used 'white lies' to protect their partners as they felt the truth would hurt their partners' confidence. All the women reported being deeply frustrated by the loss of intimacy, but they still tried to maintain positive attitudes to encourage their male partners by hiding their negative emotions.
Overall, the research findings demonstrated that all participants agreed on the importance of communication. Both men and women reported increased and improved communication helped them to clarify and solve conflicts. Through communication, men became more sensitive toward their relationship, thus fulfilling their female partner's need to be understood. The understanding from female partners encouraged the men's acceptance of their illness and ultimately enhanced their relationship. Based on results of this study, and support from previous research, many couples that faced illness together reported becoming closer to one another [6]. Couples whose relationships survived the diagnosis of MS claimed that the disease actually improved their closeness and intimacy.
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