Sexuality is an evolving, overall development of one's feelings of personal identity, well-being and selfesteem that involves both social and physical relationships. This is an individual lifelong process, which is influenced significantly by personal perception, social conditioning, cultural and religious factors.
The impact of MS on sexuality
The onset of MS can alter a person's perception of himself or herself as an individual, altering sexual development and expressions of sexuality, and it can have a negative impact on sexual and intimate functioning. These are known as the tertiary sexual problems of MS, derived from the resultant psychological and social changes, as distinct from the direct neurological dysfunction (primary sexual problems) and the symptoms of MS (secondary sexual problems).
Whilst MS is not a disease of the whole person, it can overwhelm and challenge the perception of “self” with negative outcomes in relation to sexuality and sexual functioning. People with MS can find it difficult to see themselves as being “sexual”, having sexual thoughts, desires and needs whilst at the same time identifying with the role of a person with a chronic illness. Individuals see themselves as complete persons in terms of their roles within families, friendship circles, sporting clubs, activities and occupations. Any feelings of loss of control over events or unplanned changes because of MS can affect one's confidence and self-esteem and alter the dynamics of relationships, especially close and intimate ones.
The diagnosis of MS, combined with the unpredictable nature of relapses and the uncertainty of disease progression, often occurs at a time when dreams and plans for the future are being formulated and relationships and careers established. The diagnosis of MS may well cloud an individual's expectation of the future. This can result in reactions of grief, anxiety and depression, lowering self-esteem and reducing confidence. Such feelings may cause reduced sexual interest and withdrawal from sexual activity.
The fear of potential or actual disability can have a negative impact on the perception of body image. People with MS may feel less sexual or sexually attractive. This is particularly evident in cultures where desirability is associated with beauty, fitness and health. Sexual feelings and sexual activity are not just for those who are young and able-bodied, yet this is the message continually transmitted by the media.
Increasing disability can bring with it changes in domestic routines, reduction or cessation of employment and reduced social interaction. This can be very distressing for those who have seen their primary role as the wage earner or the homemaker, for example. Disability can also lead to dependency on others for personal care. If the partner provides this care it can be very difficult to separate the role of carer from that of intimate lover. Visiting carers, nursing and domestic services intruding into the home can leave people with MS feeling exposed in all areas of their life, with little private time.
Dealing with the impact of MS and symptoms can leave one neglecting the emotional and psychological aspects of life in general. Simply attending to the physical needs of life's daily activities can leave little time or energy for emotional contemplation and intimate relationships. This is particularly evident if fatigue is experienced as a symptom of the MS.
It is important to remember that people with MS are not isolated and living in a vacuum; their worries and concerns affect others. Conflict can
| become apparent in established relationships if these factors are not recognised and addressed with ongoing and honest communication. Not uncommonly, resulting misunderstanding, resentment and feelings of rejection by the partner occur as they see MS becoming the dominant focus.
Management of tertiary sexual problems
People with MS who experience problems with sexuality need to allow themselves time to assess their overall situation and to feel confident about communicating their difficulties to those close to them. Whilst this is not always easy, literature on MS and sexuality can provide useful information and help transcend feelings of isolation and uniqueness. There is also information on treatments and sexual aids that are available. Such information can be useful for partners to read and discuss together. Deciding on a time and a peaceful setting to talk about problems of sexuality helps to create an atmosphere of mutual commitment. It is important to be gentle and express feelings without blame or accusation. People with MS and their partners should explore the areas of concern slowly, listen to each other carefully, as frequently misunderstandings and resentment are the result of poor or no communication, and respect each other's opinions. It is important to remember that sexuality is not just about physical intercourse. Sexual pleasure can be gained, and given, by creating special times, places and rituals. This takes time, effort and nurturing.
It may also be of benefit to seek further help relating to problems of sexuality from health professionals. Whilst bringing up the topic can be difficult and embarrassing for people with MS, this can also be so for some doctors and health professionals. It is important to find an MS healthcare provider with whom one feels comfortable, or seek a referral to someone specialising in this area. Going together, and with pre-written questions, can be helpful and provide the focus for initial consultation.
For health professionals the key to managing tertiary sexual problems in MS is firstly to identifywhat issues are having a negative impact on the well-being and sexuality of the individual. This includes identification of primary and secondary sexual problems, as well as the psychosocial factors and their complex interaction. Of prime importance is to recognise the person with MS as a whole person in the context of lifestyle, values, roles, desires and relationships. Management depends on frank and open communication about sexual issues. Treatment of any underlying depression and anxiety may require medication and psychological counselling and the provision of ongoing monitoring and support.
Counselling can help individuals to explore feelings and facilitate discussion in a respectful and professional way. Negative emotions such as guilt, anger and resentment can be identified, seen in context, and worked through, in a non-judgemental environment. Topics perhaps seen as too embarrassing to discuss alone, can be discussed in an open and supportive atmosphere. Strategies for improving the situation, or adopting new ways of considering and developing sexuality, can be introduced.
Sexuality is an important aspect of human life and must not be neglected when considering the impact of MS on an individual. Increasing awareness and acknowledgement of the effects of MS on sexuality have greatly improved the management and treatment options available for people with MS experiencing difficulties in this area.
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