Leukaemia

Self-image, sex and relationships

Being diagnosed with cancer or having cancer treatment can affect how people feel about their body or self-image. Some women said the leukaemia or its treatment had changed their body and made them feel less feminine (see ‘Hair loss and body image’). Living with chronic lymphocytic leukaemia (CLL) often made people feel and look tired: they made a big effort to look good to counter how they felt. Marie dresses smartly in colourful clothes to make her feel brighter. When Gilly was in hospital being treated for acute myeloid leukaemia (AML) she had so many 'undignified' procedures that she felt her body no longer belonged to her but to everybody else. However, she always made the effort to get washed and dressed no matter how ill she felt. Ann felt less of a woman after her leukaemia treatment led to an early menopause (see ‘Treatment-induced infertility’) but she learned to accept it.

Some men also said that hair loss caused by their treatment had affected their body image and masculinity. Other men felt less masculine because of weakness and vulnerability during and after treatment. Having to give up work dented some people’s sense of identity or self-image (see ‘Work and daily life’). Not all felt this though; having the strength to get through his leukaemia treatment made one feel more of a man.

Some men had worried that their leukaemia treatment might reduce their ability to have or maintain an erection (impotence). One had been too embarrassed to ask about this possibility but it didn’t happen. Another did experience difficulties and talked to his GP and his wife and he no longer worries about it. Some men said they had continued to feel masculine during the illness because they hadn't experienced impotence.

Some drugs used to treat cancer, and the tiredness that treatment often causes, can reduce interest in sex (libido) during and after treatment. Tiredness as a symptom of CLL may also cause this. Feelings about changed body image and lack of self-esteem can affect people’s relationship with their partner and their desire for sexual intimacy.

Some people were nervous about having sex during or soon after treatment. Neil asked if he should and was told it would do no harm. John said that the first time he and his wife made love after his treatment they did it very gingerly and carefully. Ian and his wife made love in his hospital room during his treatment. They'd had difficulties in their relationship and making love confirmed that they were back together.

Many people in a relationship said that they had little or no sex during their illness and treatment. Reasons included that they felt too ill, tired or weak, and didn’t like the changed appearance of their body - they felt physically unattractive and embarrassed about being naked. As Frances explained, such feelings were 'not exactly conducive to having a nice cosy sexual night'. One woman said she was concerned about infecting other people with her CLL even though she knew this wasn't possible. Some people with CLL had lost their sex drive but weren’t sure whether the illness had caused it.

Lack of sexual activity can cause difficulties in some relationships, particularly if the reasons are not discussed. It is common for partners of people with cancer to feel scared of touching them in case of causing pain, and partners may lose interest in sex themselves as a result of changes in the person with cancer. Several people told us that their lack of interest in sex hadn't been a problem in their relationship.

Sexual difficulties can both cause and result from relationship problems. People who feel their partner is being unsupportive may not feel like having sex with them. Having been held together by the illness, some relationships broke down after going into remission.

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Some people said that their relationship with their partner had got closer or stronger as a result of the illness. It had mended some broken or struggling relationships. People who had been married a short time said the illness disrupted plans for a normal married life. The experience could change personalities, altering the dynamics within a relationship. Joanna and her husband communicated with difficulty after strokes left him unable to speak.

Frances and her partner were joined in a civil partnership ceremony after her remission; before that her partner would have had no rights if anything had happened to her, something that worried them a great deal. Starting a new relationship after serious illness brings challenges too. Chanelle started a relationship years after her chronic myeloid leukaemia (CML) diagnosis and when her condition was stable. Occasionally, when she has a bad day, her partner finds it frightening as he isn't used to seeing her like that. Another woman with CML ended her marriage after her new husband became unsupportive of her lifestyle and her health began to suffer.

With support and clear communication people with cancer can still maintain a healthy relationship and enjoy a fulfilling sex life. Help is available for those who have difficulties. Health professionals don't always discuss sexual issues and patients may hesitate to raise them. However, specialist nurses can provide support, suggest solutions to sexual difficulties or refer for counselling.

* MDS - Myelodysplastic syndrome

Last reviewed: August 2015.

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