• The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

Rediscovering sexuality

Sexuality is a fundamental human need – the source of life, sensuality, pleasure and passion.

A spinal cord injury almost always affects the sexual functions. It interferes massively in the personal, intimate and social life of you and your partner. Altered body awareness can often influence your self-esteem, your psyche and your identity as a man or woman.

Burgdörfer and Kock describe the stages of sexual rehabilitation as follows:

  1. Phase of insecurity / repression
  2. Phase of experimentation
  3. Phase of acceptance / enjoyment

Even if not every phase is achieved and continuously experienced, some typical phenomena, opportunities and risks will arise and characteristic behaviours will be demonstrated in the partnership.

Phase of insecurity / repression

In this phase, the people affected feel completely disorientated, and the topic of sexuality is usually pushed aside. Talking to your partner, specialists or peer counsellors is important to reduce anxiety and correct unrealistic expectations.

Experiences from this phase allow you to free yourself from old norms, discover yourself and your own body, and bring about the conditions for a new beginning for an altered sex life. Having no expectations about the remaining possibilities for sexual activity and satisfaction can result in resignation. If they have no vision of the future, people with SCI often imagine that a separation is imminent, assuming that their partner will want to separate anyhow. From the partner’s point of view, this first phase is characterised by withdrawal, avoidance and rejection of physical closeness and contact. Partners are often subject to the injured person’s grief and depression, as well as their verbal aggression and provocation. Even if the partner does not give in to the wish to separate, the affected person will always wonder: was it out of pity or out of love? The ability to communicate is often not (yet) sufficiently developed, and self confidence is still not strong enough to express and actively implement erotic or sexual desires if they are felt.

However, if a certain curiosity is experienced about what sexual activity is still possible with the paralysed body, this can become a driving force for further stages of development.

Phase of experimentation

If curiosity has outweighed resignation, a phase of experimentation with the remaining physical possibilities can begin. Depending on the speed and size of the steps, this can lead to successful experiences which bolster self-esteem, but also to frustrating experiences. These can be unsettling and send you back into the first phase.

Whatever happens, nearly all actions and experiments will be governed by the old norms, e. g. with the objective of having an orgasm at all costs. It is precisely this fixation and restriction to sexuality which prevents sensual experiences and enjoyment; in other words, the sexual possibilities in the sense of athletic performance are compared to those of an unaffected person. The affected person feels unattractive in every way, cannot see anything lovable about him or herself, and cannot imagine that they will ever be loved again.

On the partnership level, caring about one’s own attractiveness is a positive prerequisite for attracting the partner for physical contact. Exploring, individually or together, the remaining or altered and missing sensibility and functions enables a realistic assessment of the possibilities on both sides.

Ideally, experience and ideas about such possibilities can be mutually made clear; physical closeness, erotic stimulation and the first intimate contact can then be tailored to the wishes of both partners. Couples can then experiment with their own solutions, practices and positions. In all this experimentation, the real functional limitations will become evident, but the remaining functions will also become clearer.

Reorientation can mean:

  • Tenderness instead of / as well as coitus
  • Communication instead of frustration
  • Openness instead of anxiety

The phase of experimentation can continue for years or even decades. If all goes well, after a period that varies greatly from one person to another, the phase of enjoyment can be achieved.

Phase of enjoyment

The affected person or couple has become free of old norms, accepted the limits imposed by paralysis and used the spinal cord injury as an opportunity to implement new behaviours and communication strategies in such a way that intimate contact is primarily a sensual and pleasurable experience.

In terms of the relationship, the phase of enjoyment is mainly characterised by the attainment of open communication between the partners, and the use of sensuality rather than performance as the benchmark; sex has taken on a structure that works for the partnership, one that can benefit from exciting changes as a result of the couple being open to trying new things.

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