Intimacy and sexuality add to quality of life and emotional wellbeing. While motor neurone disease (MND) does not directly affect sexual function, it can impact sexual intimacy in other ways. Fatigue and other physical changes can create barriers to self-expression. Emotional changes can also affect your sex life.
How a diagnosis of MND impacts sexuality and intimate relationships is different for each person. For some people sex becomes more important after diagnosis. For others it is less important.
Having physical contact and time together can be a source of comfort, closeness and pleasure as a person’s condition deteriorates. Despite this, the impact of MND on intimacy and sexuality is often not discussed during clinic visits. This leaves people living with MND and their partners unsure who to talk with about these issues. They may not know where to find information.
MND itself does not directly impact sensation, sexual function, arousal, fertility or the ability to have an erection or orgasm.
However, the physical and emotional impact of MND can affect sexual expression and the way you feel. Things like medications, lack of mobility and respiratory problems may affect your sexuality.
When a partner takes on more of a caring role this can also change the balance of the relationship. For some people this can affect desire. For others, facing the challenges together strengthens their relationship.
Speech problems may impact your ability to communicate needs, desires, love and affection. You may already use signs and signals such as blowing a kiss, but you may need to try new ways of communicating and signalling how you feel.
Whatever you try, be willing to plan ahead, be creative and laugh together while you experiment. These things can help you to stay intimate.
As MND progresses things will continue to change and it is important to try maintain open communication with your partner and to seek help as required.
Intimacy and sexual satisfaction are important for people living with MND, whether you are single or in a relationship.
If you have a partner, try to keep being open and honest with them as MND progresses and things change. Tell them what you like and do not like. Listen to each other and try not to get frustrated with one another.
There are people you can talk to if you are struggling with the impact MND is having on your sex life or your relationship. You may find it easier to telephone, text or email your GP to ask for advice about who to talk with. You could also ask your MND Association Advisor, nurse, palliative or allied health care professional where to find information and support.
With support and open communication it is possible to adapt and make changes to maintain intimacy with others.
Some of the physical, emotional, and cognitive features of MND can be managed to reduce the impact on intimacy and sexuality. Try to discuss any worries you have with someone from your healthcare team. Choose someone you can trust and feel comfortable talking to. They will be able to talk through your concerns. If needed, they can refer you to the appropriate health professional.
Starting conversations about sex and intimacy isn’t always easy and can feel awkward. If your doctor does not start the conversation, you might like to ask:
Seeking help and support with personal care and household tasks can also have a positive impact on your relationships. Having help around the house can assist with fatigue and give you more time to spend together. Taking time out and maintaining your outside interests supports wellbeing and mental health. Talk with your MND Association Advisor about support and respite options available.
People living with MND who are NDIS participants may be able to have funds included through their NDIS plan to assist with social and community engagement. This includes sexual intimacy. Information about how the NDIS funds sex therapy, sex workers and family planning is available at Plan Partners
If you, or your partner, are living in a residential aged care facility you can ask them about how they can support you to maintain intimacy and sexuality.
If you are living with MND and menstruating (have your period), talk to your GP. If changing sanitary products becomes too hard, you GP may be able to prescribe a long-acting contraceptive to reduce or stop periods.
MND does not affect fertility. You should keep using contraception if a pregnancy is not planned.
If you are living with MND and wish to become pregnant, there are many factors to consider. Pregnancy can pose risks to someone living with MND. To help with making a decision about pregnancy and childbirth, ask your healthcare team for guidance.
If you would like to know more about sexuality and intimacy, the below links may be helpful.