JPM, Vol. 12, Pages 1985: Sexuality, Intimacy, and Reproductive Health after Spinal Cord Injury

Sexuality is generally not well addressed in medical, academic, military, and rehabilitation settings. At best, sexual health is limited to issues of sexual dysfunction or impairment, changes in functioning after injury or onset of illness, deteriorating chronic health conditions or disability [103]. However, a more current understanding of disability/ability focuses on well-being, completeness, pleasure, enjoyment, enrichment, and flourishing in life. Such a strength-based model guides the assessment and treatment of sexual health-related issues and conditions as part of the “whole person” [104]. This comprehensive approach reinforces the importance of investigating issues on an individualized basis related to sexual health while incorporating facets of social context, identity, gender, sexual orientation, culture, religion, ethnicity, additional medical and emotional conditions, developmental history, age, beliefs, life experiences, personal choice, diversity of ability and disability, and choice [105]. In fact, the complexity of understanding the individual is the foundation from which evidence-based intervention and support are derived.Spinal cord injury is a traumatic, life-altering experience usually associated with an initial loss of control across multiple dimensions [106]. Common themes include clinging onto life, reestablishing living, repair and rehabilitation, strategies and adaptation, mourning what is lost, and letting go to allow for what is new and available. The pursuit of pleasure and intimacy follows a similar course in terms of adjustment to maximize individualized defined quality of life.

Sexuality, pleasure, intimacy, gender identities and roles, sexual orientation, eroticism, and reproduction can be defined and given value by the individual. Intimacy follows sharing personal information, feelings, and thoughts that foster being understood, valued, respected, and caring about oneself and each other. Here, the self becomes us, and self-pleasure becomes we as partners-pleasure. The excitement of self-pleasure broadens to the excitement of also pleasing another person. Pleasure brings together the mind and body, thoughts and feelings, knowledge and exploration, the joining of safety-trust-connectedness into awareness, and the opportunity to travel on the road of sexual self-exploration and discovery.

However, for some, there are changes following injury that can produce a challenge to the sexual relationship with oneself and with others. These may include physical appearance, spasms, loss of bowel and bladder function, erectile dysfunction, changes in vaginal lubrication, contractures, weakness, decreased endurance, limited communication, social acceptance, changes in roles, decline in sexual desire, and decrease in verbal/physical expression of affection. Rehabilitation professionals trained in these areas can provide evidence-based and best-practice interventions, along with education in assisting the individual, partner, or couple. Furthermore, educational information must be disseminated regarding safe, respectful sex, including permission and consent, sexually transmitted disease (STD) prevention, and protection against potential violence/abuse. There are also additional healthcare access opportunities to provide screening, education, and support, such as primary care interactions [107].Individuals with spinal cord injury can also face obstacles, including stereotypes of what constitutes an acceptable relationship, partners, and life activities [108]. Such challenges can impede successful navigation with the intricacy of finding the right person or persons. Misconceptions about spinal cord injury, rooted in a lack of knowledge, misinformation, and limited understanding, can ruin the very foundation for good self-esteem and self-efficacy.

Strong self-efficacy drives a person’s accomplishment and well-being. Strong self-esteem inspires oneself to at least attempt and, most importantly, propels confidence that the person has the right to attempt. However, individuals with low self-efficacy and self-esteem can view challenges such as relationships as threats and avoid or withdraw from them.

Current research informs us that individuals with spinal cord injury can have the same levels of sexual desire as individuals without spinal cord injury. Both groups can have positive sexual relationships, with some having less or more sexual dissatisfaction than others. Personal choice, cultural and religious belief and practice, injury severity, onset of injury, opportunity for intimacy, privacy and access to meet others are examples of factors that can impact the expression of closeness and desire following spinal cord injury.

For the most part, in psychological counseling, when people talk about sex after injury, they are also talking about having a positive and meaningful relationship with another person [108]. When seeking relationships, an opportunity is typically mediated through means such as a friend’s introduction or a random chance meeting. More recently, access to the opportunity to meet has been aided to a degree through online dating services and safety-monitored chat rooms. Still, the challenge for many individuals remains in deciding how much and when to disclose one’s injury to others.

Partner’s satisfaction is crucial in a healthy relationship and most importantly in the case of a partner with SCI. The other partner must understand and accept some of the limitations and obstacles in such a relationship. These include involuntary bladder or bowel accidents during sexual activities as well as position adjustments.

To address the deficit of sex education in healthcare rehabilitation and building or rebuilding sexual intimacy after spinal cord injury requires an educated and open mind, listening rather than prescribing, and a stance of assisting rather than defining or directing. Testimonials offer insight into the life journey: “The best sex comes from open communication and the willingness to be silly, to forget about the inconveniences the disability creates” [109], and “The secret to great sex lies more in the state of your mind than in the state of your body, in the feeling in your heart more than in the feeling in your genitals, and in the quality of the connection more than in the quality of the erection” [110].

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