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"Sexuality and intimacy after a spinal cord injury"

People have a need for intimacy, where they can be close and feel safe.

Sexual activity and intimacy provide a sense of pleasure, connection, well-being, and quality of life.

Start with exploring the overall topic in the nice introductory film and then take a closer look at the short films that address sexuality and intimacy as seniors, couples, singles, dating, becoming parents, and last but not least, hear advice from the health experts.


Sexuality and intimacy


Listen to people with spinal cord injuries and their partners share their experiences, barriers, challenges, and how sexuality and intimacy became a part of their daily life again after the injury. Also, get expert advice and guidance on aids, communication, parenting, and adapting to the new body.

Senior

Martin and Karen met in high school, and today they have three children and five grandchildren.
In 2008, Martin sustained a spinal cord injury, which turned many things upside down.

Hear their story about how they rediscovered closeness and intimacy in their marriage.

Couple

Rasmus was only 16 years old when he sustained his spinal cord injury. At the age of 20, he met Mette, and today they are married with three wonderful daughters.

Hear their story about how they met and the thoughts and challenges they faced.

Parenting

It is just as natural for people with a spinal cord injury to dream of having a family with children as it is for many others.

In this film, Senior Physician Lars-Henrik Krarup describes how becoming parents is a possibility for people with a spinal cord injury. You will also hear the story of how Xandra and Tobias met and their journey towards now being parents of two children.

Assistive devices

Over the past 30-40 years, there has been a strong focus on researching and developing both medical and technical assistive devices to promote healthy sexuality and intimacy for people with spinal cord injuries and their partners.

Various forms of sexual assistive devices have been developed, and there are special cushions, wheelchairs, and furniture designed to enhance sexuality and intimacy.

Newly injured

No one is prepared for a life with a spinal cord injury, which is why it often becomes a significant psychological and social challenge for the individual.

It’s difficult instantly to shift from being active, independent and self-sufficient to suddenly experiencing the opposite.

In this film, people with a spinal cord injury share how they navigated the new situation.

Experts

Expert advice for people with a spinal cord injury and their loved ones is crucial in managing the many physical, emotional, and social challenges that come with such an injury.

Listen to the expert’s valuable advice on sexuality and intimacy with a spinal cord injury.

Dating

Having a spinal cord injury can make dating challenging, but it is certainly possible to use dating to find love.

Many people with spinal cord injuries have successful relationships and families because of dating.

Hear people with a spinal cord injury share their experiences with dating.

Introduction to sexuality and intimacy


People have a need for and desire to experience a sense of intimacy, closeness, and security with others, such as their partner. Sexual activity and intimacy provide a sense of connection, well-being, and enhance an individual's quality of life, and are often a prerequisite for starting a family and having children. This is naturally the case for people with a spinal cord injury as well.

Self-perception and the body’s functions change drastically after a spinal cord injury, and attitudes, expectations, and conditions around sexuality, intimacy, pregnancy, and having children become different, often causing significant uncertainty and raising many questions immediately after the injury.

People with spinal cord injuries often find themselves in a completely new, uncertain, and altered situation, where the consequences of the injury largely influence their thoughts and actions—not just for the person with the injury, but also for their partner and the people around them. This applies to questions about sexuality and intimacy as well.

RYK – Spinal Cord Injured in Denmark, with support from the Health Foundation, Bevica Foundation, Louis-Hansen Foundation, and Qufora, has produced beautiful and aesthetic films and an informational website to help people with spinal cord injuries address the "big" questions about sexuality and intimacy. The films are also meant to support and assist partners, family members, and healthcare professionals involved in the lives of people with spinal cord injuries.

RYK is deeply grateful for the personal and courageous stories shared by participants and their partners, which, paired with beautiful, aesthetic, and artistic visuals, will be life-changing for others who feel uncertain.

Introduktion til seksualitet og intimitet til mennesker med rygmarvsskade

About spinal cord injuries


No one is prepared for a life with a spinal cord injury where the consequences often become huge psychological and social challenges. It takes time and can become overwhelming to adapt to a “new” life with the loss of physical capabilities, depending on assistance from others and the loss of personal independence, but afterwards the majority are getting a good life.

Physical, social, and psychological rehabilitation is initiated at one of the two spinal cord injury specialized hospitals, in Viborg (West Denmark) or in Glostrup (East Denmark), but rehabilitation is a lifelong process where consultation with and guidance from health care professionals is required, where also peer counseling from others with spinal cord injury can be valuable.

seksualitet og intimitet som rygmarvsskadet

The personal


There is no one who is 'trained' for a life with a spinal cord injury, and as a result, it often becomes a significant psychological and social challenge for the individual. The attempt to adapt to a life with reduced physical ability and often a perceived dependence on others, as well as a loss of independence, can be overwhelming. It is difficult to switch, in an instant, from being active, independent, and self-sufficient to suddenly experiencing the opposite, and it often takes a long time to get 'back on track,' but for most people, it does happen.

Physical, social, and psychological rehabilitation begins at one of the two specialized hospitals, in Viborg (West Denmark) or in Glostrup (East Denmark), but it continues 'for life.' At various points in this process, most individuals need counseling, treatment, and support from psychologists, psychiatrists, social and healthcare professionals, and others with spinal cord injuries or peers.

The mental


When a person sustains a spinal cord injury self-perception can change because of the loss of body functions. Self-perception is influenced by thoughts, emotions, and behavior. Therefore, it is important to work on self-recognition in the new body.

In this process, mirror exercises where one looks at the body, for example, without clothes, can be extremely helpful when getting to know oneself again. Many starts with the upper body and gradually expand to the rest of the body. This can help change the perception of the body and enable one to appreciate one’s own body again.

Rådgivning til mennesker med rygmarvsskade

The altered body functions and responds differently, so it is necessary to get to know the new body. This can be done through physical training, warm-water exercises, or massage, which may help create a sense of body awareness, pleasure, and touch.

It can be beneficial to use mindfulness and meditation to break the cycle of negative thoughts about oneself and the body, and to help learn how to enjoy the experience in the present moment, such as in sexual experiences.

Text is prepared by Sexological counselor Jette Skyggebjerg and the illustrations "Who am I", "Who are we" and "Values" are prepared by Sexological counselor Henriette Rask.

Desire


In the early stages following a spinal cord injury, sexual desire may be negatively affected, as most people are in crisis and uncertain about their body’s functions and the attitudes and expectations of those around them. However, desire usually returns as one becomes more 'connected' to life again, and as one gains more independence and has managed things like bladder and bowel control.

It is neither wrong nor unnatural to feel uncertain about how one together with the partner react to the changed body functions, such as experiencing incontinence during sexual activity.

Rådgivning til mennesker med rygmarvsskade

If someone has strong negative thoughts and low self-esteem, these can interfere with starting or engaging in a sexual life, and in such cases, professional help should be sought, in one of the two rehabilitation centers, in Glostrup or Viborg.

To regain confidence and get started, it is recommended to talk to a sexual counselor or a psychologist with expertise in spinal cord injuries. It can also be helpful to speak with others who have similar experiences to reflect on their insights. This is particularly important if one feels lonely or isolated.

Text prepared in collaboration with Sexological counselor Jette Skyggebjerg and Sexological counselor Henriette Rask.

seksualitet og intimitet som rygmarvsskadet

Partners


The partner has a significant role in rediscovering and developing mutual sexuality and intimacy, which now requires a special level of trust, adjustment, and open communication. For this to work it is crucial that both parties maintain an open and positive approach.

Sexuality and intimacy can be difficult topics to discuss, but they are also very important topics, as they create the foundation for closeness to thrive again.

It is essential to address the physical consequences and limitations, medical or technical aids, positions, and possibly the risk of accidents related to bladder, bowel, or pressure sores.

Activities and emotions must be adapted to the new reality for it to work. The partner’s support and understanding can help establish and maintain a strong and often crucial emotional and sexual connection, even if the body no longer functions as, it once did.

Whether it's a new partner or the current one, it is important to discuss how sexual life should be moving forward. Lack of knowledge and insecurity can become insurmountable barriers.

The changed situation and the need for mutual trust, faith, and hope can be limiting for some when it comes to establishing relationships with a new or possibly casual and spontaneous partner, but “practice makes perfect”.

 

The environment


Few people truly understand what it means to live with a spinal cord injury. As a result, many people around you also don't know how sexuality and intimacy work for and with someone with a spinal cord injury. This is completely normal!

At first, one might think it doesn't matter what others believe or think, as they are not part of a potential romantic relationship. However, it’s not entirely irrelevant.

seksualitet og intimitet for og med menneske med rygmarvsskade

Unfortunately, many individuals experience that others are unnecessarily overly curious, and one must be prepared to handle situations involving very intimate questions that, apparently, can be asked to people with a spinal cord injury, but not to others!

There will also be some who assume that because a person has a caregiver, this must be their partner, which may lead them to keep their distance, leaving the person with the spinal cord injury alone with the caregiver. This does not promote inclusion or understanding and can become a barrier to forming new relationships.

seksualitet og intimitet som rygmarvsskadet

Dating


Dating can be challenging for some people with a spinal cord injury, but it is certainly possible for young people, adults, and older individuals to use dating to find love. Many people with spinal cord injuries have successful relationships and families because of dating or more traditional ways of meeting people.

It is important to remember that a good relationship is built on mutual respect, understanding, and emotional connection, and this is also a fundamental requirement for successful dating.

Some people openly share in their dating profile that they have a spinal cord injury and use a wheelchair, while others keep this information closer to themselves and wait until they meet in person. There is no one-size-fits-all approach to this.

For a relationship to be strong and lasting, it is crucial that both individuals accept and respect each other as they are and feel comfortable with communication with a potential partner.

This openness is essential for having an important conversation about the unique aspects of sexuality and intimacy when one partner has a spinal cord injury, especially when the other partner may not have much knowledge about spinal cord injuries.

seksualitet og intimitet som rygmarvsskadet

Parenting


It is natural for individuals with a spinal cord injury to dream of having a family with children, just as it is for most of the population. However, the consequences of a spinal cord injury often make it more challenging to become parents in the way nature intended. As a result, new and alternative paths may need to be explored to realize the dream of having children, but it is almost always possible.

For women, pregnancy is rarely a problem, but being pregnant can present challenges, such as weight gain, high blood pressure, poor posture, and the increased need for assistance, possibly requiring an electric wheelchair or lift during the pregnancy.

For men, challenges may include issues with sexual function, such as erectile dysfunction, loss of sensation, or sperm quality, but there are aids and treatments available to help most men address these issues.

Today, having children is considered a realistic possibility for individuals with spinal cord injuries.

Parenting can present unique challenges for people with spinal cord injuries, sometimes starting with a lack of confidence in their parenting abilities, which might be perceived as inadequate simply because they use a wheelchair or have personal caregivers 24/7.

Experience shows that families with parents who have a spinal cord injury can be loving and secure, and many of the prejudices are dispelled when adapted to the new reality. It is just a matter of finding alternative ways of doing things.

Parents with a spinal cord injury can still be actively involved in their children’s lives by finding solutions, such as being a treasurer in a sports club instead of a physical coach.

Daily life requires finding creative solutions that enable the parent to care for their child while also taking care of themselves. This might involve alternative ways of playing, changing diapers, or helping with homework. Many families develop creative solutions that make everyday life easier for everyone.

Children can learn at a young age to understand their parents' limitations and often grow up with natural acceptance and respect for differences. They may also become more independent, as they learn to help out at home. At the same time, it’s important for parents to emphasize that the responsibility for the family still lies with the adults, and that children should have the chance to be children, not full-time caregivers to the parent with the spinal cord injury.

Parents with a spinal cord injury can naturally build a strong emotional bond with their children, as the challenges can lead to more quality time together and deeper conversations. It is important to have open discussions with the children about the situation, so they understand what is happening and how it affects the family. This way, children of all ages can feel safe and supported in their upbringing, while also learning about empathy and the strength of overcoming challenges as a family.

Most families with parents who have a spinal cord injury find that their environment does not question the normalcy of parenting on equal terms, and that the surroundings are often very accommodating to ensure equal opportunities in activities such as daycare or school.

seksualitet og intimitet som rygmarvsskadet

Counseling


Counseling for people with spinal cord injuries and their loved ones is crucial for managing the many physical, emotional, and social challenges that come with such an injury. It is important that counseling regarding sexuality and intimacy takes place in a safe space where personal challenges can be openly discussed, as this is essential when addressing issues related to sexuality and intimacy.

Professional counseling from doctors, physiotherapists, psychologists, and social workers can provide vital information on everything from rehabilitation to assistive devices and home modifications.

Support and guidance from peers is also very important in achieving the best possible life with a spinal cord injury. RYK (Spinal Cord Injured in Denmark) has a large network of mentors who support individuals with a new spinal cord injury at BEC and VCR—experienced individuals with spinal cord injuries offer guidance and support to others based on their own experiences.

Counseling can also help family members and partners better understand how they can support their loved one in terms of intimacy and closeness. For many couples, rebuilding intimacy after an injury can be a challenge, but with the right guidance, they can find new ways to be close and maintain a strong emotional connection.

It is important that counseling considers the different needs and stages of life, ensuring that both young, adults, and older individuals feel seen and heard in the process.

 

Assistive devices


Over the past 30-40 years, there has been significant progress in both medical and technological solutions that support people with spinal cord injuries in reclaiming or enhancing their sexuality and intimacy. This development has allowed many individuals with spinal cord injuries to experience more satisfying and functional sexual experiences, and today, there are a range of aids specifically designed to address these needs.

Development of Aids and Technological Solutions

A broad range of aids have been developed, such as special cushions, wheelchairs, furniture, and sex toys, which can help create better conditions for sexuality and intimacy. In terms of men, there has been great progress in medical treatments for erectile issues, including the use of medications like Viagra, Sildenafil, Tadalafil, and Cialis, as well as the development of aids such as penis rings, penissleeves, and Caverject injections, which help maintain an erection.

For women, the focus has been on developing products that help counteract dryness and increase desire. Vaginal lubricants and hormone treatments have proven useful for many women with spinal cord injuries. Additionally, powerful vibrators such as the "Wand" and "Womanizer" have been very helpful for stimulating the clitoris and enhancing sexual pleasure, especially for women with reduced sensation.

The Importance of Professional Guidance and Caution

It is important to emphasize that one should not experiment with medical treatments, aids, or sexual techniques without first consulting professionals. Guidance from doctors, physiotherapists, sexologists, and occupational therapists is crucial to ensure that aids are used correctly and to avoid injury or complications. Additionally, professionals can help develop personalized solutions for sexuality and intimacy that take individual needs and desires into account.

In Denmark, it is possible to apply to the municipality for aids or special arrangements that can enhance sexual activity, such as vibrators or specially designed furniture that supports physical positioning during sex.

Personal Experience and Mentorship

For many people with spinal cord injuries, it is also helpful to speak with others who have similar experiences navigating sexuality and intimacy after an injury. Mentors through organizations like RYK (Spinal Cord Injured People in Denmark) can provide invaluable support and inspiration. Sharing experiences with others who have gone through similar challenges can offer hope and practical solutions to help manage the physical and emotional aspects of sexuality.

Practical Tips for Enhancing Sexual Health

Both men and women with spinal cord injuries can improve their sexual function through training and specific techniques, such as pelvic floor exercises. These exercises can help improve erections, orgasm intensity, and continence. If one still has sensation, using aids like the "Empelvic Cushion" can be practical for enhancing pleasure.

Patience and Practice

Exploring sexuality and intimacy after a spinal cord injury requires time, patience, and practice. It is important to have realistic expectations and be open to trying new methods and techniques. Many individuals with spinal cord injuries find that they gradually build a new understanding of their bodies and sexuality, leading to a new and possibly even more satisfying sexual life.

With the right support and the right aids, many people with spinal cord injuries can regain a significant portion of their sexual function and experiences, and they can build intimate and close relationships that promote both physical and mental well-being.

Text prepared in collaboration with Sexological counselor Jette Skyggebjerg and Sexological counselor Henriette Rask.

Incontinence


Many people with spinal cord injuries experience or fear incontinence issues during sexual activity and intimacy. However, it is a topic that is not often discussed, even though it is completely understandable that it may not feel attractive to urinate or have a bowel movement in bed during sexual or intimate moments.

It is important to ensure that the bladder is emptied before engaging in sexual activity, and it's essential to be open with one's partner about the possibility of such accidents. Communicating with the partner can help create an environment of understanding and support. One must be reminded that the mood doesn’t need to be ruined by such an accident, and it can even be helpful when reacting with a bit of humor. For instance, you might say, “Well, I’ve just marked my territory!”

Dealing with bowel incontinence can be particularly vulnerable and difficult to accept. An open and honest conversation with your partner, where there is understanding, empathy, and support is helpful. Again, much depends on how you handle it yourself. If you can approach it with humor, it can help break the taboo and make the situation less awkward.

If you experience bowel incontinence, it might be helpful to prepare beforehand by emptying your bowels, for example, through an enema or transanal irrigation (TAI). Some people also find that using an anal plug works well for them.

In addition, there are many other ways to create pleasure during sexual activity that do not involve bowel issues, such as touching and oral sex, which do not lead to incontinence accidents. The bladder and bowel centers in the spinal cord are located so closely together that stimulating one may also stimulate the other.

It is always a good idea to keep a towel nearby, so you can say something like, “Let’s just place this here.” You might also choose to use an incontinence sheet for added peace of mind. The most important thing is to feel comfortable and relaxed about it.

If you find it difficult to deal with, you could consider reaching out to a sexologist or a psychologist for support. It can help to break down the emotional barriers and find strategies to manage the situation more confidently.

It is also natural to plan activities in the calendar, so why not plan sexual activities as well? Having a routine or making time for intimacy can help foster a relaxed and enjoyable environment.

It is important to emphasize that incontinence does not define one's sexual identity. If you are struggling with the situation, it’s always recommended to consult a professional advisor or a mentor who can help create a strategy to move forward and improve confidence in intimacy. 

Text prepared by Sexology counselor Jette Skyggebjerg.

Information


There are many places where you can find information about sexuality and intimacy for people with spinal cord injuries, as well as for their partners and family members. One of the most accessible resources are videos on YouTube, particularly from organizations in the USA and Australia. For example, the Paralyzed Veterans Association (PVA) in the USA and Spinal Cord Injuries Australia (SCIA) both offer educational videos and content that address the specific challenges and solutions related to sexuality and intimacy for people with spinal cord injuries.

A great appreciation


Thanks to the project group; Stig Langvad, Cathrine Guldberg, Chief Physician Lars-Henrik Krarup, Occupational Therapist and Sexological Counselor Jette Skyggebjerg and Nurse and Sexological Counselor Henriette Rask.

Texts prepared by Occupational Therapist and Sexological Counselor Jette Skyggebjerg.

Illustrations prepared by Nurse and Sexological Counselor Henriette Rask.

Thanks to Bevica Lagater, the Danish Health Foundation, Qufora & Aage and the Johanne Louis-Hansens Foundation for making these films a reality