Relationships and sex

Living with MND has implications for many personal relationships, but especially for the relationship with a husband, wife or partner. Many people, both individuals and carers, told us the condition had made them feel closer to their partner, and that they were able to give each other powerful emotional support. However, adjusting to changes in the nature of the relationship could be difficult. As one woman said, “I find it quite upsetting because he's changed from being my husband to being my husband and my carer, and he's doing things for me which I think he shouldn't have to do.”

It has brought him and his wife even closer together. They have both had to adjust to changing roles as he becomes more dependent on her.

Another couple found the intensity of being together every day was difficult and their relationship improved a lot when he went to work full-time and she had paid carers. She said, “I could tell him about my day, and re-establish that normal relationship. And that has been great. That's been really, really good, to get that normality back.” (See Interview 39 - Liz's story). A man who cared for his wife said, “I wanted to have a relationship with my wife, not with a patient.” At the same time, providing intimate personal care could also bring opportunities for renewed closeness (see 'Personal care and care support').

Caring for his wife made them closer than ever before, and they put aside trivia and disagreements. It was important to continue to have a sex life.

However, many people said they sometimes found it hard to talk to each other (especially around the time of diagnosis) or felt they drew apart on occasion. Sometimes the practical tasks of caring and anxiety about the future made people tired or frustrated, and, in turn, their partners sometimes felt guilty or sad for them. The stress of living with condition could bring out existing tensions in a relationship or add to the stress of other life events. As one woman commented, “Your relationship may not be at the highest point it's ever been.” (See Interview 49 - Una's and Bill's story). She and her husband had lost their daughter not long before he was diagnosed, and their different ways of grieving were already “making it hard for us as individuals together….I felt MND cheated me of my grief.”

He and his wife have become closer, but sometimes they get frustrated. He admires how strong his wife has been for both of them.

Living with MND can bring out problems in a relationship, but he and his wife feel close enough to work things through without counselling.

Her husband finds it stressful caring for her and working. It has affected their relationship, but he'd find paid carers in their bedroom and bathroom intrusive.

She gets irritated that she cannot run the household and has to let her husband do it. He finds it hard to take on the role of carer, which he had never expected.

Sometimes he gets impatient waiting for his wife to say something with her Lightwriter, which he knows he shouldn't.

The differing symptoms of MND could affect relationships in different ways. Some people missed chatting and easy communication with their partner when speech was affected, but their physical relationship was unchanged. MND does not in itself affect sexual ability, but people with arm or leg weakness sometimes found it difficult to enjoy physical contact and sex. Some found ways round it by using different positions. Cuddles were often a way for couples to remain close, when sex was no longer possible. Others commented that their enjoyment of sex had been affected by other factors such as depression, and also the menopause (given that MND is most common amongst people over 50).

Their sex life has not been affected, but they miss talking to each other. It can be challenging being together so much and sometimes they need space. [Mike is unable to speak].

It saddens him that they can no longer have sex, but he tries to cuddle his wife and be as physical as he can.

They are still able to have a normal sex life. Bearing weight on his arms is difficult, but they find ways round it.

Not being able to give hugs and cuddles and show physical affection was difficult to get used to.

She misses being able to show physical affection. Now she has learnt to ask people for a kiss or a hug.

In some cases, the stress of a diagnosis of MND had sadly caused a relationship to break down. However, some people began new relationships, and said that the new people in their lives loved them as they were and made them happy. 

Marcelin never thought he'd have another relationship, but it means a lot to him that Tess wants to be with him and values him as he is now.

When Tess first met Marcelin she was worried about getting too close and afraid of losing him. Now she sometimes forgets he has MND.

Her husband couldn't cope and left. She thought no-one could find her attractive but she met someone who made her feel beautiful and happy again. [Voice software interview].

However, one young man diagnosed in his early twenties was not in a relationship and did not think it likely he ever would be. He said, “No, no girlfriend. I don't think they're going to put up with me.” 

A single mother felt not having a partner made her life much harder because there was no-one to help get her out of the house and motivate her. She said, “Even the wrong partner would be better than no partner, in many ways. Because I think they would say, “We've got to carry on. If only for your son, you've got to be seen to be doing something.” She had begun an online relationship with a man who also had PLS, but felt it had fizzled out because they were at different stages in the condition.

She started an online relationship with a man with PLS. But since she's been using a wheelchair he's stopped writing. She thinks he's in denial about symptom progression.

People living alone without the support of a partner might need more support from paid carers - see 'Personal care and care support.'

In the small number of cases where MND is discovered to run in the family, starting or being in a relationship raises additional issues. These are discussed further in 'Possible causes of MND'. See also Interview 22 - Liz's story, Interview 34 - Ken's story, and Interview 39 - Liz's story.

For more reflections on relationships and changing roles, see also sections on 'Impact on family carers' and 'Personal care and care support'.

Last reviewed July 2010.