Lung Cancer
Feelings of stigma, shame and guilt about having lung cancer
Many of those interviewed here felt stigmatised by other people partly because they had cancer and were expected to die, and partly because they were blamed for having cancer. Both smokers and non-smokers perceived that they were held responsible for their disease (see also 'People's ideas about the causes of lung cancer' and 'How it affects family and friends').
Some people had given up smoking, and some had never smoked, yet still felt stigmatised. They said that lung cancer can be caused by other factors, such as asbestos and pollution. Some explained that it used to be socially acceptable to smoke, and so they became addicted to cigarettes. They felt that others did not understand the problems of addiction.
One man asserted that funding for lung cancer is poor because people are blamed for their illness. He commented that because most lung cancer patients tend to die relatively quickly they are not around to talk about their illness, which leads to misunderstanding and thus 'keeps the stigma rolling'.
Says smoking is addictive and research for lung cancer is relatively underfunded because people are blamed for their illness.
Says smoking is addictive and research for lung cancer is relatively underfunded because people are blamed for their illness.
You said you felt that lung cancer patients were blamed perhaps because they're smokers?
Mm
Were you a smoker yourself?
Yes I smoked for 20 years.
And did anybody ever actually say to you?
Well yeah, I think they probably did you know. I think people are made aware of the fact, I mean they even write it on the packet don't they? But I think it's a strange thing, I mean I grew up with my role models were people like Humphrey Bogart and people like that and I think if you see Humphrey Bogart in most instances he's got a cigarette stuck in the corner of his face and I think role models like that when I was young portrayed smoking as being something both very acceptable socially but also a very cool thing to do. So I think that's what probably starts you, what keeps you going obviously is because it's so addictive. I'd actually given up smoking four or five weeks before I was diagnosed as having lung cancer so again another twist to my story I guess. It's a very, very difficult drug to give up. If you don't smoke it's very difficult to relate it but I would put it on a par with, I would say, although I've never taken heroin I would put it on a part with heroin addiction, in fact probably as destructive as heroin if not alcohol as well. I see little difference. You know if you're addicted to something you're addicted to something, irrespective of what that medium happens to be.
Has anybody actually said to you "That's your fault"?
Not directly no, but I think you know just looking at what goes on. I'm very involved in lung cancer from a patient's perspective, what I see is like I say is lack of funding and if you compare research that's happened for, pardon me, for breast cancer for instance and the amount of money that's allocated to breast cancer for research and screening programmes and so forth and compare that with those of lung cancer there is a huge difference, there is a massive difference to the point where one has to ask the question why is there you know such a difference and you know I can only assume that it's because it's self inflicted and it's because it's smoking related.
Says that because most patients are not around to talk about their illness misunderstanding persists and keeps the stigma rolling.
Says that because most patients are not around to talk about their illness misunderstanding persists and keeps the stigma rolling.
I think it's progressional, I think it's a sliding scale. I think if you've got cancer I think that to be told you've got cancer is not a very nice situation to find yourself in. I think from the outside looking in if someone says to you they've got cancer you think, not long to live, that kind of thing, we all know you know about chemotherapy and so forth and so on, that kind of awful side effects to chemotherapy and what people go through. Very often people die and I think that's a stigma in itself and I think you're stigmatised because possibly people can't deal with that because they see you as someone who's going to die soon and they can't deal with that kind of situation, it's easier for them to stand away from that.
With lung cancer it's even more stigmatised I think because it's perceived as a self inflicted injury because of smoking, obviously smoking probably makes up 97% of lung cancer patients and because of that I think people tend to think well, you know, it's your own fault for having smoked. Which is true in one respect however I could argue against (laughs). But the whole thing about lung cancer is people don't live long enough to be able to say too much about it, about the treatment, about how you feel. The actual cancer journey for someone with lung cancer can be very short so I think in a lot of instances people just don't have the time or the energy to put into talking about it because they're so busy trying to deal with the enormity of the fact that they've possibly got a very short time to live. The prognosis in a lot of cases is really frightening it's, the onset of lung cancer from diagnosis is very rapid and because of that I think you know there's so few lung cancer patients available to talk about it which in a way keeps the stigma rolling because it's not discussed, people aren't knowledgeable or, understand it for whatever reason.
Some people felt that their GP did not take their cough seriously, and one man attributed this to the stigma associated with smoking, which he considered quite unfair.
Asserts that smokers are stigmatised and that GPs don't investigate symptoms as promptly as they might with other cancers.
Asserts that smokers are stigmatised and that GPs don't investigate symptoms as promptly as they might with other cancers.
I think all people with lung cancer are stigmatised, especially if they're smokers and those that aren't generally blame it on the smokers for their passive smoking. So everybody feels that lung cancer, I believe anyway, is self-inflicted. But you could say that about any illness. Every illness, or almost every illness is self-inflicted in some way or another so, but the stigma is definitely to do with smoking.
Has anybody actually said that to you or given you the impression that they felt that?
Yes, I go to a support group once a month and we're all lung cancer patients, and every one of them have suffered some sort of stigma in some way or another because of the fact that most of them smoked, not all of them but most of them smoked. But it's, everybody feels that lung cancer is self inflicted. It doesn't get the funding say that breast cancer would get.
Have people ever told you specific examples of how they felt they were stigmatised?
Sure yeah, when you go to the doctors the first time you go to the doctors with a bad cough and coughing up phlegm in the mornings the doctor will almost certainly say to you "Do you smoke?" and once you've said yes, you're sent packing with a bottle of cough medicine. It's not a question, if you went to the doctors with a small lump the size of a pea on your breast you'd be straight into the hospital but you can be coughing up phlegm for years and nobody will offer you a hospital appointment. With other things like prostate cancer it's diagnosed very quickly and as soon as you go into the doctor's with a cough and you smoke you are just pushed to the back of the queue. And it's quite unfair really, people who go with problems with drink related or people who fall off a cliff through rock climbing are not stigmatised the same way that smokers are.
One man asserted that all lung cancer patients are stigmatised because of smoking. His doctor assumed he had smoked and added the information to his medical records, even though he denied that he had ever smoked. This man also felt ashamed because he felt he should have been 'tougher' and could not support his family. He blamed himself for his illness, assuming he had done something wrong. Others also felt shame, concerned that they could no longer fulfil social obligations and work commitments.
Asserts that all lung cancer patients are stigmatized, whether or not they smoke.
Asserts that all lung cancer patients are stigmatized, whether or not they smoke.
So right away what I was, annoyed me as well as that, on my, my medical records I'm classed as a smoker and every time I ever went for review after that they would ask me 'Are you still smoking?' because that's down there. And no matter how I told them, I'd say 'Look I don't want that on there, I never smoked,' its only my word that can go against that, that says that.
Explains that he feels ashamed that he has cancer.
Explains that he feels ashamed that he has cancer.
You felt shame?
Shame, for me I was ashamed that I had cancer, that I presumed I had cancer yeah. Anyway....
But why did you feel it was something shameful?
Because I was a man, because I, as a young man I'd boxed, I'd run marathons, I'd played rugby, at the time I was taken ill I was in an advanced swimming club and I just felt, I was at that time I was in work, you know I was the provider and I just felt ashamed that this disease had come and, come to me. I found that very hard to cope with; even now after all this time. Anyway...
Sorry at the time you were taken ill you were, did you say a provider did you say?
Yeah I was the provider, I was the one working you know providing for me kids and wife you know. And I suppose it was that really but yeah shame, yeah.
Yeah obviously laying awake of a night together you know not, quizzing one another 'do you know?' and again it was, I was just ashamed of, of having cancer, I really was you know. Still am!
You still are?
Yeah. I suppose I just, you know really wish it would go away forever although I've been discharged and that you know. Uh, its, it's a stigma isn't it you know.
You still think there's stigma even today?
Oh yeah. I don't think you, from the moment you have cancer you're a cancer survivor and that stays with you right till, the rest of your life really. You know I'm not a victim because I'm here.
What's made you feel that?
As I say I think it's because I feel I should have been tougher than that you know. I shouldn't, I shouldn't have got cancer you know. Like I said it might have been something I'd done, maybe me life style, you know something I'd done wrong, I don't know or something I'd tried to do right because I kept myself fit.
And you're not a smoker?
No and I never smoked, no. On the contrary really so I don't know you know.
Has anybody ever made you feel that by saying anything?
No. I, when, my own interpretation of people with cancer, long before I had it, if somebody said they had cancer I would look at them with sympathy and you know 'Oh you poor soul' you know, maybe that made me, suddenly I was in that position, they were looking at me. I, I was always aware of that when it first got about that I had cancer, I called it the 'leper syndrome' in as much that people are looking at you in as much that people are looking at you, they're aware you, you do see them and they are talking about you 'that you've got cancer and everything you know,' even though you, they don't know your diagnosis and your prognosis you know.
So you think that's still the same today?
Yeah it definitely is the same today. I'm, I can be, I'm aware of myself doing it in some ways when I know someone has cancer, its very difficult how do you cope with somebody else's illness you know, when its maybe a terminal illness especially.
The stigma associated with lung cancer can affect people's relationships with family, friends and neighbours. A man diagnosed with mesothelioma said that after his diagnosis his daughter found it hard to talk to him about his illness. He thought this was because cancer is seen as 'dirty', as 'disgusting', as something we don't understand.
Explains why he thinks his daughter found it hard to talk about his illness.
Explains why he thinks his daughter found it hard to talk about his illness.
But why do you think people feel that cancer might be dirty?
Because, maybe because we don't understand it, because there's no way of understanding cancer. It's something that grows within certain people and there's something disgusting about it (Laughs). There's something' because it's not nice, I suppose, you know, it's just something that's, it's, it's cells that are some sort of misformation. I think there's an association, not dirtiness in terms of 'I need to hoover it up' or 'I need to get the dishcloth out' but just dirty in the sense that 'I need to keep away from it, I want to remove myself from it'. So, I think that's what she felt. I haven't discussed this with her, because until such time'..
Unfortunately she's now moved even further away. She's now living up in, near Glasgow, and I haven't seen her since she moved. And really, I need to see her and then be able to talk to her, because it's not something we can talk over the phone.
One woman was 'terrified' that she would not be treated by the NHS. She recalled hearing on television that smokers might be refused treatment. She was relieved to hear that she would receive treatment.
Some people were upset and frightened by television adverts that warn people about the dangers of smoking cigarettes, though others said that they did not mind them. One woman said that there should be more publicity about those who survive lung cancer.
Describes how television adverts warning people about the dangers of cigarette smoking upset her.
Describes how television adverts warning people about the dangers of cigarette smoking upset her.
Well we talk about, 'How are you today?' that sort of thing but you don't go round, people avoid the subject, people that, well I had one very good friend just kept away, never saw her once I told her.
Why do you think that is?
I think people are afraid of it. And people in our lung cancer group have said that they've had friends who've crossed the road rather than speak to them.
Why do you think they're afraid?
I don't know it's always been a sort of taboo subject hasn't it? Unless you know somebody or you've got somebody in your family with it you don't really bother much about it. I hate those adverts that come on the television when they finish it by saying two weeks after this she died. And one of them said when you've got lung cancer you drowned. And I said to the nurse, I was really offended by this, well by all of them. I know they're to stop people smoking but they're not pleasant to watch when you've got lung cancer. And the nurse told me that you don't drown. And then we did ask what really happens to you and she said, 'Well the cancer grows bigger and gradually takes over your body and you get weaker and that's it.' So it's not a death by drowning.
Thinks more should be said about people who have survived lung cancer.
Thinks more should be said about people who have survived lung cancer.
I think they're good yeah I think they're good. The only one I don't like is where it says that she died two weeks after, I don't like that because I think if you've got lung cancer you've just been diagnosed with it and you see something like that and it says "Oh Colleen died," is it Colleen or Colette, "died two weeks after that," it's not helping you, it's very depressing. What you want, you want to go up. And it's like when you've had cancer you're up here but you can come down and it's like being on a seesaw. I mean John Wayne died when I was in hospital, he died with lung cancer the week I had my lung removed with cancer you know. But you don't, you don't want things like that you want, you want people to help you to come up, not go down there you know.
Yes get over it?
To get over it, you want to come up here, not be pushed down with it and told you're too, this lady died two weeks after this, God help her and God help her family, I feel very sorry but it's not helping people. And I do, I do, I've got a bee in my bonnet about it, I really have you know I think they should be, why don't they, why don't they put more publicity about, like publicity about people that have survived, that have come through it, why don't they do more? They do more about people that have died with it than people that are still living with it you know. And it annoys me, it does, it really gets me.
The stigma associated with lung cancer can seriously affect people's lives. One man did not claim financial benefits because he did not want to admit openly that he had lung cancer, and a woman kept the diagnosis to herself, rather than attend a support group, because she feared that friends would avoid her if they learnt about her condition. She had experienced stigma in the past due to epilepsy.
Last reviewed May 2016.
Last updated May 2016.
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