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Leukaemia

Hair loss and body image

Radiotherapy and certain chemotherapy drugs can damage hair, making it fall out. The amount of hair loss varies between individuals and depends on the dose of the drugs or the area targeted by the radiotherapy. Some people’s hair only thins while others lose it all. Hair may be lost from the head or from the whole body. Not all chemotherapy drugs cause hair loss. Most people taking oral chemotherapy lost no hair; but Jean said that hers had thinned.

Some people had expected their hair to fall out immediately after starting treatment, but in reality it happened several weeks later. Aley kept pulling his to see if it would come out. Some people's hair thinned gradually before all coming out. Many were alarmed and upset by hair loss. Dianne had been amazed at how much hair was strewn about her room. Ann had been advised to wear a hair net at night to catch it.

 

Jim's hair fell out a couple of weeks after starting treatment; he used a sticky roller to pick...

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Jim's hair fell out a couple of weeks after starting treatment; he used a sticky roller to pick...

Age at interview: 24
Sex: Male
Age at diagnosis: 23
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Okay. You haven’t really talked about hair loss. You’ve obviously lost your hair at some stage.
 
Yes, three times now.
 
Three times.
 
Three times really.
 
How do you feel about losing your hair?
 
Well, the first thirty-five days in hospital, after a couple of weeks my hair started to come out a little. And I had sort of medium length hair and it was all over the pillow and every time I put my hands in my hair there’d be, not huge clumps of hair, and it was quite even, which was quite nice, so I ended up looking like a new born chick, as my girlfriend said. We had this marvellous device from Japan which is like a paint roller but it has sticky tape on it and so you can pick up all the hair with that. And you can buy them in Muji stores in England and they’re absolutely fantastic for getting rid of hair that you end up leaving everywhere.

Many people cut their hair short or shaved it off before it fell out; some said this gave them a sense of control. Several had a hairdresser friend or relative who did this for them. Kerry shaved hers off because she didn’t want to watch it fall out. Doing this didn’t necessarily avoid the upset though; Frances had been proud of her hair, which had been long, thick and shiny with grey streaks, and cried for a day. Neil’s hairdresser had a bit of fun by shaving his hair into a Mohican style and photographing it before removing the rest of it. Dianne shaved off a few tufts that were left after the rest of her hair came out.

 

Jeff’s niece, a hairdresser, shaved off his beard and head hair but he regretted asking her to...

Jeff’s niece, a hairdresser, shaved off his beard and head hair but he regretted asking her to...

Age at interview: 68
Sex: Male
Age at diagnosis: 67
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So did the hair loss bother you at all?
 
No, as I had hardly any hair at all, what’s a few more strands? It’s nothing. The only thing, I had a beard for twenty-odd years and that came off as well because I didn’t want bits falling here and there and I’d look like something from the deep. So I shaved everything off. My niece who runs a salon, she took it all off for me and I looked like a boiled egg. I shouldn’t have shaved my eyebrows off, that was ridiculous. I looked like something from a concentration camp. You know, straight out of the Munsters.
 
But they’d have fallen out anyway so…
 
I don’t know. I don’t know but I know one thing, I used to have, I couldn’t shave a wet shave. I had to have, Joyce bought an electric razor, which I’m no good at, because up until I had this white hair I used to be very dark. And if I shaved in the morning and had to go somewhere in the night I’d have to shave again, and I could grow a beard in twelve days, and my brother is exactly the same. But now I shave sort of every other day, but it took a long time for my hair to grow back on my head. And I don’t think I cut my hair for about six weeks. And then of course I could see it forming and then I would take it down. I always cut it sort of a number two. I used to take it right down to the bone but I don’t do that no more. I’m under strict orders.

Hair loss, combined with other visible effects of treatments, such as weight loss, changed people's appearance, which could be difficult to come to terms with and undermined self-confidence. Some people realised how much their eyebrows had defined their face. Aley said he looked horrific with no hair, pale skin and lifeless eyes. Frances said the combination of a purple rash, a round face and a small patch of hair in the centre of her head made her look like a red onion. She felt ugly and uncomfortable about being hugged by her partner (see ‘Self-image, sex and relationships’). Several people said they no longer recognised themselves in a mirror. John, aged 52, said in the mirror he saw “this old man with a grey face and skinny and looking rather worn out and weary.” He thought, “Well, that’s how I look after I’ve had chemotherapy as I’ve got leukaemia. That’s the look of a man with those things. That’s okay.” Brian felt that losing body and facial hair was odd for a man, whereas Jim's feeling of his masculinity was unchanged as his girlfriend thought he looked cute without hair.

 

The effects of leukaemia treatment made Frances feel that her body was alien to her and appeared...

The effects of leukaemia treatment made Frances feel that her body was alien to her and appeared...

Age at interview: 45
Sex: Female
Age at diagnosis: 42
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Has having this illness affected the way you feel about yourself as a woman - your femininity?
 
Well. That is the thing I was surprised about the most. It did have an impact on my body image. It really did. And I’m somebody who’s very confident and I’ve got good self-esteem in my body. I’ve always been, I come from a family of chunky women, or sonsy women as we call them in Scotland, which means short and plump. And I’ve never, ever felt uncomfortable about my body, I’ve always felt quite secure in its abilities.
 
I think what knocked my confidence was my body wouldn’t work the way it used to work. I didn’t feel as strong. I felt as if my shape had changed. Facially I felt as if I’d changed quite a lot because my hair is so short now whereas it was always really long before. And I would sometimes, I avoided looking in mirrors for ages and thinking, ‘I never ever classed myself as vain.’ But I don’t think vain is the right word to describe it. I think saying that it’s vanity really diminishes the impact that this illness has on you. I think that I would sometimes look in a mirror, and how I described it to a friend of mine was that when I looked in the mirror I could see the shock and I could see the impact of what my body had been through on my face. And I thought I looked really, really tired and I looked, a lot of people say to me that I’ve got quite bright eyes, but my eyes were really, really dull and it felt like I was walking about in an alien body. It just didn’t feel like mine any more. I’m getting used to it again. I’m starting to like it again. I’m not used to it. I’m not somebody who ever had a dislike for their body so to have that was very odd and disturbing to me. I didn’t like how my body felt, I didn’t like how my skin felt, I didn’t like my shape.
 
I actually put this down to being in pyjamas for most of a year, you know, that any clothes I wore I felt claustrophobic in even though they were too big for me for a while. And I had lost an incredible amount of weight and I didn’t look like me. Everything just looked, my eyes looked too big, my teeth looked too big, my face was pinched. I lost a lot of weight and my boobs didn’t look like mine, you know, they were just odd. It was like, ‘Who belongs to them? They’re not mine.’ So there were lots of things like that when I was getting the treatment I never thought too much about it, it was after it I really, really, really felt as if my body had been completely ravaged by the treatment really.

Hair loss was a visible sign of the illness so going out in public could be difficult to cope with. Claire felt that people were staring at her. Others preferred to hide themselves away at home. Some people said that their hair loss upset people around them more than themselves, and they wanted to hide their hair loss from loved ones at first. Claire's youngest child didn’t like to see her bald. By contrast, Joanna hadn’t minded her husband’s loss of facial hair as she had never liked it.

 

During his chemotherapy Deb attended a business meeting; he didn’t tell the client about his...

During his chemotherapy Deb attended a business meeting; he didn’t tell the client about his...

Age at interview: 40
Sex: Male
Age at diagnosis: 38
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Did any of the treatment make you lose your hair?
 
Yes, chemotherapy it started with, yeah. I was having no hair on my head.
 
What about the rest of your body?
 
Nothing there. No hair.
 
How did you feel about that?
 
I, yeah, didn’t exactly, no, well it started with like, I remember that once I joined back the office after my third chemo, there was a client meeting, there was a business meeting in a place about an hour by train from here. I went there and I was very, yeah, that was the only time I was very uneasy to face the business clients in a meeting, in a professional meeting with no hair. And I was wearing a suit and I was wearing a cap. So I could not find any other hat. I mean that was during summer so there was no winter, no cap or a winter hat or anything available in the stores. All I could find in one corner of my house is a baseball cap. So I went there and that was a time which I felt kind of weird. And I did not tell anyone neither my company or myself told the, or could tell the client that this guy is having this problem. My boss from India who was there in that meeting he told that, “You don’t have to come here. We’ll manage.” But I said, “No, no I’m okay. I can travel. I can go there. I’ll go and that will make me feel better.” So he allowed me but it was kind of weird, yeah. That was the only time which I felt. But the rest of the time in the hospital you see everybody is in the same condition so you don’t feel anything bad about it.

The NHS can supply wigs but some people were reluctant to have one. Julie said a nurse tried to encourage her by wearing a variety of different wigs herself on the ward each day. Some people didn’t like their NHS wig; Thelma said she hadn’t taken the trouble to make sure hers fitted properly. Ann found it difficult to position her wig since she had no hairline, and found it hot to wear – she fainted one day while out shopping.

 

Julie was scared at the prospect of losing her hair; she didn’t want an NHS wig so her mother and...

Julie was scared at the prospect of losing her hair; she didn’t want an NHS wig so her mother and...

Age at interview: 38
Sex: Female
Age at diagnosis: 27
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Dear me, it was, well having long hair, and I mean really, really long, to, I mean when they said I had acute myeloid leukaemia I didn’t cry. I didn’t cry, I was just more, ‘Wow.’ As soon as they said, ‘Your hair’s going to come out’, floods of tears. And my dad was like, ‘You’re kidding me. It’s going to grow back and you’re crying.’ And I was like, ‘Yeah, but I’m going to look different.’ And oh yeah, oh God, did you look different. Because one day you’ve obviously got hair and then you’ll look in the mirror the very next day and there’s nothing.
 
And certainly I think the last thing to go was my eyebrows and my eyelashes and I just remember looking in the mirror one day and thinking, ‘God I had more eyelashes than that and more eyebrows than that.’ And I remember going like that and they were in my hand, totally, and you just feel you just don’t want anybody to see you with a bald head. And, you know, you’re going through hats, scarves, wigs, and as I said, at that time the NHS ones were woeful. And I’m only a young girl so I wanted something a bit more stylish, if you like. So my mum and my friend went up to South Ken to look round at shops. And in fact one of the nurses on the ward looking after me said to me, ‘Whenever I go out’, and she lived in London, and she said, ‘When I go clubbing in London I never go out with my normal hair.’ And she said, ‘I always wear wigs.’ And she came in one day and I just couldn’t stop laughing because she had this long blond wig on one day, she came in the next day and she had this brown one on. And she said, ‘See what looks you can create.’ She said, ‘You can be anybody you want.’ She said, ‘You can be Jennifer Aniston one day and Angelina Jolie another day.’ And that put a smile on my face. Didn’t last long though because obviously the reality is that you’re not these people and you do look different and bodily you obviously look extremely thin. I think about that time I was barely seven stone and I’m quite tall, I’m five foot six. So it was awful, and obviously extremely pale with no hair and, you know, you’ve got a partner and you think to yourself, ‘God. I must look a fright.’ But when you did put the wig on and you did put, obviously, some make up on and clothes on and everything, you could look pretty normal, but for a woman I think it’s a very shattering experience.
 
You do get, like everything else, you do get used to it. You do look in the mirror and it’s part of the normal life. It took time, don’t get me wrong, it did take time and obviously at first if someone would walk into the hospital or my house I’d be, ‘Quick quick quick. Where’s a hat, where’s a scarf, where’s something?’ Dump it on your head. But after a while it got to, ‘Oh can’t be bothered’, you know, and they’d see you and first of all they would walk in and they’d be, ‘[gasp]’, you know, but then again you start talking and then they realise you’re still the same person and it’s still me.
 
And after a while you do get used to it but the very first I’d say few months is a very, very daunting, shattering experience because, not only are you dealing with a life-threatening disease, you’re looking in the mirror and you’re looking at a different person. And you’re also bodily, facially, everything, but as I say, I had long hair and my cousin cut it off and I’ve still got it to this day. Kept it.

Men often wore a hat rather than have a wig, and lots of women said they preferred wearing a scarf, bandana or beanie, to wigs. Most people chose when to cover their baldness. They often stayed bald at home but would put on a wig or hat to answer the door bell. Most covered their heads in public but several didn’t bother when attending hospital appointments as others there were in the same situation. Meeting other people who had lost their hair through treatment helped Claire to have confidence in her changed appearance. Dianne said she went bald with pride. A nurse had complimented Frances on her bald head. Neil had a Spiderman head painted on his bald head for a laugh while running a tombola at a local fair.

Some people took a positive view, saying that baldness avoided the need to shave or to brush their hair. Jim hadn’t minded losing the unsightly hairs that grew out of his numerous moles. Some people's loss of hair hadn’t bothered them, either because they accepted the way they now looked or, for men, because bald heads were fashionable at the time. Some found hair loss was a small price to pay for having their life saved.

 

Elaine accepted her hair loss; she had a wig from the NHS but didn’t like it and wore it only...

Elaine accepted her hair loss; she had a wig from the NHS but didn’t like it and wore it only...

Age at interview: 39
Sex: Female
Age at diagnosis: 35
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You said you wore a wig.
 
Yes. Yes.
 
Did you wear the wig all the time or just sometimes?
 
No. I only wore the wig if I was going out. I didn’t wear it in the house or in the hospital really. Very uncomfortable. Because I knew it was a wig, nobody else would probably have known, but I just didn’t like it. Like I say, I only wore it if I went out.
 
Was it supplied by the hospital?
 
Yeah. Well you had to go up to [city] and get fitted. There was a shop up in [city] that you went to. I got fitted for it and stuff. It was okay. I wasn’t bothered about losing my hair. It didn’t bother me as much as I thought. You know, I thought I would have been a lot more upset. But I just had accepted the fact that this was going to happen. There was nothing I could do about it so I just had to accept it and it was going to grow again anyway. I knew that so, you know, for a few months I was bald.
 

Jim wore a hat in winter to cover his hair loss; at other times he went bare-headed; he gradually...

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Jim wore a hat in winter to cover his hair loss; at other times he went bare-headed; he gradually...

Age at interview: 24
Sex: Male
Age at diagnosis: 23
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But about the hair loss. I lost a bit and it was quite patchy, and obviously it makes you look like there’s something wrong with you, like you’re ill - not that I really felt that but obviously other people, that’s kind of what they’d feel, because you don’t look at your hair all day because it’s on top of your head, for me anyway - and wasn’t really an unpleasant experience.
 
The second time when I had, just a couple of months ago, these three shots of this vincristine drug and hair kind of went everywhere. I’d started to get my hair back and I cut it so it was all an even length, which looked much better than kind of going around with bits of hair sticking out. And it was the winter when I lost my hair and I was wearing lots of hats anyway, and I’ve bought lots of hats so I quite enjoy wearing hats, which is nice, and it’s a good present for anyone to get you. But when I lost all my hair that was a different experience. First my head became very cold very quickly. But like most great things, your body adapts and I guess it pumps more blood there or whatever happens to baldies, or people whose hair thins and they shave all their hair off. And you just get used to it and so your head stops feeling cold and you can walk around like a skinhead and feel fine.
 
And lost lots of hair on my legs, which is a bit funny but it’s not such a bad thing. And I suppose a good thing is if you’ve got, you know, I’ve got quite fair skin and got quite a few moles on my arms and such, and obviously the hair grows there, you know, accelerated, not so desirable rates and doesn’t look fantastic. But then when all your hair falls out those go, it’s like, wow, cool. I don’t have these unsightly hairs anymore.
 
And the first time my eyebrows stayed in, which I think helped a lot because not having your eyebrows does make you look more weird. And the second time my eyebrows pretty much totally went, and no hair on your head and people’s reaction would invariably be that you look a bit ill. But there are people who aren’t ill and have alopecia and such who don’t have any hair, ever. You know, and it’s just the same when you get a haircut and people say, “Oh, you look a bit different”, you know, it looks a bit strange or something. And but they’ll just get used to it and the same with yourself and so it ends up not making much difference for me to how I felt.

Hair often grew back thicker and curlier, or a different colour to how it had been before. Some people lost their hair two or three times. Ann’s hair had fallen out gradually the first two times, but fell out all at once the third time. Claire said that losing her hair a second time had upset her more than the first time.

Last reviewed: December 2018.
 

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