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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.

 

Marilyn often feels tired because of her CLL*, which affects how she looks; she makes an effort...

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Marilyn often feels tired because of her CLL*, which affects how she looks; she makes an effort...

Age at interview: 62
Sex: Female
Age at diagnosis: 54
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Has having this illness affected the way you feel about your femininity at all?
 
Don’t know. I don’t think the leukaemia has. The menopause has but I don’t think the leukaemia has. I think it, well, I suppose it has because sometimes you feel so tired and I look grey and bags under the eyes and your hair’s not in good condition. So I suppose in that sense it has. So I try and, I have tried in the past to make sure that I don’t sort of hang around in my dressing gown and stuff like that, so I’ve made a concerted effort to get over those feelings. But in a way I suppose it has, yeah. It makes you look at your appearance more because, you know, feeling tired and stuff like that. I mean you look in your mirror and you think, “Good heavens.” And sometimes you’ve got no colour and you look sallow. So I’ve kept, things like having my hair done regularly, I’ve managed to do that. And luckily I’m so lucky I didn’t lose any of my hair in either of the treatments so that’s a big plus I think.

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.

 

At first Ian had felt less of a man because he was weak and vulnerable and giving up his job as a...

At first Ian had felt less of a man because he was weak and vulnerable and giving up his job as a...

Age at interview: 43
Sex: Male
Age at diagnosis: 35
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How do you feel about your masculinity? How has this affected how you feel about yourself?
 
Given where I came from, the job that I did and how important masculinity was within my role, because I’d very often be knocking on somebody’s door and because I was involved in some serious crime investigations, including drugs, be throwing somebody to the floor, basically, to try and make sure that we got the evidence. So masculinity was a big part of my life.
 
I felt vulnerable when I was ill, I felt really vulnerable and for maybe a couple of years afterwards, felt very frustrated, I felt very weak and frustrated. And I think that’s to do with physically not being able to do things, but also that I had no role, nothing. I’d been a police officer, I was a police officer, I was a detective constable, acting detective so I was somebody whereas all that had been taken away from me.
 
I was lucky that we moved here to [town], to another location where people didn’t know me as Ian the policeman. If I’d have stayed where we were I think I would still have that on my shoulders and it would be difficult, but down here they don’t actually know me as Ian who was in the police and did this and that. So that’s made it a bit easier for me.
 
And I think I still like my masculinity because I’m playing football again, five a side for two hours a night on a Friday with the lads and I’m playing badminton. So yeah I think I’m back to where I was and I’m enjoying them even more now than I used to, so my masculinity I’m proud I think it’s still there. Yeah.
 

Jeff had never felt he had to prove himself as a man, and felt more of a man than ever when he...

Jeff had never felt he had to prove himself as a man, and felt more of a man than ever when he...

Age at interview: 68
Sex: Male
Age at diagnosis: 67
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Do you think all this has affected the way you feel about your masculinity at all?
 
No, not at all. I am who I am and what happened to me was no-one’s fault, just the luck of the draw, and it doesn’t make me less of a man. It makes me more of a man actually.
 
In what way?
 
That I could stand up to this damn thing and beat it, with the help of others. And I don’t need to prove that I’m a man to anyone. I never have done. And I know exactly where I’m coming from and I get on with things. You know, I don’t sort of, well Joyce and I, all the years we’ve been married, like all families you have your ups and downs but you’re always there and never have to prove anything to one another. And I think it’s people who, they come close, the human being what he is, none of us are the same, and there are people feel less of who they are, and I’ve never done that.

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.

 

Mike, aged 66, has experienced some impotence but his GP thinks it is due to his blood pressure...

Mike, aged 66, has experienced some impotence but his GP thinks it is due to his blood pressure...

Age at interview: 66
Sex: Male
Age at diagnosis: 62
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Do you think having this illness has affected the way you feel about your masculinity at all?
 
You asked for it you’ll get it in technical terms. Some of the chemotherapies made me wonder about my virility in the real sense of could I have an erection. I think we boiled it down, because I did go and speak to the GP, I think we boiled it down more to being the things that they’re treating me with for ordinary blood pressure. And we worked out that they’re likely to be damaging to the libido, but then I’ve got to consider my age. I’m not necessarily going to be Picasso. No I don’t feel in the sense less masculine. I did at times feel less able to be masculine but I don’t worry about that now. I think I just accept it as part of the age I am and the treatments I’m receiving. And we get along fine.
 
Did it cause problems at the time?
 
Not, well for the first time, I have never been in life a person who couldn’t be typically male and have an erection almost as I needed. After treatment I found that was much more difficult and so my psyche was to an extent struggling with that and that’s why I went to see the GP. But I think I’ve chatted it out and my wife and I talk about it so I think we’re not in the least worried now. Just, you know, that’s the way it is.

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.

 

Sex had been the furthest thing from Julie’s mind during her AML* treatment; she was very weak,...

Sex had been the furthest thing from Julie’s mind during her AML* treatment; she was very weak,...

Age at interview: 38
Sex: Female
Age at diagnosis: 27
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Given everything that you’ve said about how you felt about your body, I wondered if it had caused you any sexual difficulties during your illness. I guess there weren’t many opportunities for you and your partner?
 
No there wasn’t. It was because obviously my legs and they were putting things in my legs and I was so weak. Again, sexual opportunities they were very few and far between. And obviously you didn’t feel you wanted to because, again it’s the furthest thing from your mind. So that’s difficult, and also because your body is different in every way, because obviously being a woman you haven’t got a hair on you, you kind of feel embarrassed of the way you look and you don’t want people, anybody looking at you. So you find you cover yourself up a lot more. So again that didn’t help with the relationship.
 
But as much as you try not to, or he would say, ‘You still look the same to me.’ You know you didn’t. You know, I’ve dealt, I’ve a mirror. I’ve got eyes. I can see I don’t look the same. Like I say I was seven stone. I looked ill. You could see I was ill. I was so pale in comparison to a milk bottle. And I looked horrendous, I know I did. So you just feel so unattractive that obviously sex is the last thing you want to think about, the last thing on earth you want to be doing. And again it’s not the first thing on your mind, for sure. And then obviously taking your clothes off in front of people is again such a frightening experience because it’s the last thing you want to do.
 
And I remember one time they did let me come home with the little taps in my leg and you’re just frightened that the slightest movement or knock is going to obviously put the needle out or anything like that. So during that time it didn’t happen very often. And it was the furthest thing from my mind because, you know, it’s not the first thing you think about. And the way you look and you know that you look different, it’s the last thing you think about, to be honest with you. And you just, not even in front of your partner, even like my mum and that, you just didn’t want to get undressed in front of people because I was so thin, so scrawny and pale and horrible that, no you didn’t get dressed or undressed in front of people.
 

Since having CLL* she has lost interest in sex but doesn't know how much this may be due to the...

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Since having CLL* she has lost interest in sex but doesn't know how much this may be due to the...

Age at interview: 60
Sex: Female
Age at diagnosis: 55
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So have you had any problems with your sex life with those feelings and the way you felt generally?
 
Yes, I’m not really interested any more unfortunately. I don’t know if that’s anything that, again, if that’s the menopause or whether it’s just… It’s quite hard to explain but it’s never really been that high on my agenda, to be honest. So I prefer, I sort of quite like the companionable relationship. I’m not saying that it’s completely out of the window but I suppose it does affect it because if you’re depressive anyway and you have leukaemia you’re going to be even more depressed. And when you’re depressed you’re not really interested in having a sexual relationship. So yes I suppose you have to say it has affected it. It’s probably prolonged the sort of not bothering about it more than it might have done.
 
Is that a problem in your relationship?
 
It’s a problem where I do feel a bit guilty about it. It’s something we don’t talk about. Whether that’s because my husband’s accepted the thing the way it is or whether he doesn’t want to talk about it, I don’t know.

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.

 

During her ALL* treatment Frances felt very ugly and insecure about being seen; she and her...

During her ALL* treatment Frances felt very ugly and insecure about being seen; she and her...

Age at interview: 45
Sex: Female
Age at diagnosis: 42
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So did the way you felt about your body affect your sex life?
 
Yes.
 
Would you be prepared to talk a bit about that?
 
I felt very ugly. I felt too tired to even think about anything. I mean at points when I was being hugged, even being hugged it, because my partner’s arms went round me a different way and fitted me differently, I just didn’t like it. I just, no, I felt kind of uncomfortable about it and I felt insecure about being seen. I felt very let down by my body, especially when I was very weak and I was home, in the first year when I was home at points. I mean any sort of, let’s face it when you’re tired and you’re exhausted and you feel that sick, it’s not exactly conducive to have a nice cosy sexual night. Do you know what I mean? It’s not going to happen and it didn’t happen. And it was fine. It was never an issue, it wasn’t even discussed, you know, it was a case of, ‘What do you need right now?’ ‘I need a bag of Cheesy Wotsits and a bar of chocolate because I can’t eat anything else.’ ‘Fine. That’s what we’ll get you.’ Curled up on the couch and, you know, good funny DVDs or whatever. Comedy.
 
But even things like getting in and out of the bath was really difficult, and getting up and down off chairs was really difficult, and I felt really, I don’t know, awkward, and it just felt alien so I didn’t even like touching my body. You know, I would be in the bath and I’d look at my legs and where I used to have really, really good muscles it was just this kind of saggy flesh and I be quite put off by it, so it’s not exactly conducive to having a healthy sex life when you’re feeling like that about your body.

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.

 

Her husband found it difficult to cope with her leukaemia; she resented this and sexual relations...

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Her husband found it difficult to cope with her leukaemia; she resented this and sexual relations...

Age at interview: 55
Sex: Female
Age at diagnosis: 49
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What about sexual problems? Did all this wreak havoc with your sex life?
 
Oh absolutely. My husband had great difficulty in coming to terms with my diagnosis and was unable to cope. I resented him terribly for not coping and therefore not being of any support. It was me with the life threatening disease and it was him falling apart. I don’t think it is a terribly uncommon thing to happen unfortunately as over the years I have heard of people splitting up over a leukaemia or cancer diagnosis. I know of someone recently who split from his wife, he has CML and she was never able to accept it although he is doing well and is at work and leads a normal life she has a huge mental block over this, she has refused counselling and this man has now lost his family over his wife’s inability to get to grips with his disease.
 
It is very difficult to have rampant sex when you are in such a position. I think my husband was afraid to hurt me or do something that would make me worse somehow, it sounds silly but I think that’s how it started – it was like he was protecting me. I also had a problem which was accepting that my husband was not coping. I felt he was letting me down and being selfish when retrospectively I was being selfish and not considering his own emotions about the whole thing. I am a very strong person and he is not, and I found that hard to accept. I resented him for this and he found an outlet in gambling – he spent a lot of time and money gambling on horses – somehow believing that if he won lots of money he would make everything alright. What he did was put us in debt and increase my resentment - but it was his way to cope. His other crutch was drinking and this also did not help in resolving our difficulties.
 
I do believe that it is sometimes harder for the other person in a relationship to cope. The person with the disease has something to focus on, gets the help and support at the hospital but the partners do get forgotten in all this. There should be counselling readily available for people diagnosed with a cancer and their close relatives/partners. It is not something you may want to go to at first but along the way everyone would identify a time where this would be useful.
 
Before my diagnosis I used to read articles about couples splitting up after one of them had been diagnosed with cancer and I couldn’t understand how this could happen at such a time when they really should be together and helping each other …. now I can see what a devastating effect a cancer diagnosis can have on a couple and family and it really is not easy to deal with all this when you are trying to stay alive.
 
We are several years down the line now and I would like to say that all was well but it is not, we have resumed a sort of ‘status quo’ but we will never be the people we were before I was diagnosed with leukaemia.
 
This aspect of wrecking people’s lives is really not recognised, people focus on the disease and the treatment but the psychological issues run deep and cracks in relationships become crevasses.

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.

 

Elsa had split with her boyfriend before her MDS diagnosis but they got back together when he...

Elsa had split with her boyfriend before her MDS diagnosis but they got back together when he...

Age at interview: 52
Sex: Female
Age at diagnosis: 48
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What kind of impact did your illness have on your relationship with your boyfriend?
 
We had actually split. He was totally devastated but we’d remained friends. And he was devastated but I didn’t know that I was so ill at that time and when he got the call to say that I was there he was at the hospital right away. And he really didn’t think I was going to make it. So, yes, we got back together again. Whether or not that was because I was ill or I don’t know, it was fine. It was good at the time and we’re still friends now and that’s it, yeah. So he was very good. He was really good. And I needed him. I really did need him at that time and he knew it, and yes, he was there. He was at the other end of the phone and he was always, if I was at the hospital, he would go to the hospital with me. Yeah, he was very good. Yeah, very good.
 
Sorry, one of the things he did always know when I actually needed a blood transfusion. Always. When I was on the phone he could always just tell by my voice when I needed it. And it was him that actually sometimes organised it. He would phone the hospital and get them to do the blood transfusion.
 

Having found inner strength to deal with her leukaemia, Marilyn has gained in confidence which...

Having found inner strength to deal with her leukaemia, Marilyn has gained in confidence which...

Age at interview: 62
Sex: Female
Age at diagnosis: 54
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I mean my life has felt fractured the for the last eight years. Not to the point where it’s gone completely, because I’ve managed to stitch it together, but it fractures in unexpected ways.
 
Such as?
 
It’s made me less compliant. Choose my words carefully. I think when you’re in a relationship, especially one that’s been as long as ours, you often have a leader and a follower, which, you know, you choose your own path. Now I’m coming up to the leader bit and that’s changed a lot of things. And I’m sure that’s to do with having to find your inner strength to fight your battles and you become much more of a rounded person and much more of a confident person. So in a way, having leukaemia has made me more confident but it’s changed the balance of our life. To me it’s changed it for the better and I think that that’s an unexpected thing to have happened. I wouldn’t have expected that to have happened when I was told. I just expected to be ending up lying in bed having to be looked after, and it’s gone a different way.

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.

 

When diagnosed with MDS Susan had been given a life expectancy of 6 months, which prevented her...

When diagnosed with MDS Susan had been given a life expectancy of 6 months, which prevented her...

Age at interview: 72
Sex: Female
Age at diagnosis: 61
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Do you think having this illness has affected the way you feel about yourself as a woman at all, your femininity?
 
Oh Lord yes.
 
Oh, really. In what way?
 
I had a very happy second marriage and he died quite suddenly in what, ’95. And I still felt quite young and I didn’t in the least want to start another relationship because I didn’t see how I could, in honesty, what with being told I’d got MDS and possibly six months. How do you warm up to somebody and allow them to get fond of you and then tell them, well, he’ll probably be looking after me dying and I might not last that long and, tough, you’ve drawn the short straw. No, it was a great curtailer on that front. And I would have liked to have, you know, I would even have married a third time and been happy if I’d not had this hanging over me. But it seemed to me an inappropriate burden to put on other people.
 
But now that you’ve survived…
 
I’m sorry.
 
…ten years.
 
Well, perhaps I made the wrong decision but it was still, I wasn’t to know.
 
It’s not too late.
 
I don’t know. Yeah, I occasionally think about it. Yes, I’m fond of my men folk.

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
  ALL – Acute lymphoblastic leukaemia
  CLL – Chronic lymphocytic leukaemia
 
Last reviewed: December 2018.
 

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