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The stigma of cancer: how blaming or outright avoidance affects cancer survivors

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For our latest “Let’s discuss” topic, we asked our online community members if they had experienced cancer stigma, a negative or undesirable perception of a person affected by cancer. Previously, some of our members have shared that they have dealt with the stigma of cancer, and we wanted to open up the discussion to our community to hear how they have been affected by stigma and how they have coped with it. 

Cancer stigma can manifest itself in many ways. Sometimes it causes people around the cancer survivor to avoid the topic of cancer altogether. In other cases, the cancer patient can be made to feel as if they are to blame for having the disease in the first place. Then there are the internal struggles for cancer survivors who often find it difficult to cope with the changes in their bodies after cancer treatments. 

Here are some of the thoughts shared by both our English and French community members at CancerConnection.ca and ParlonsCancer.ca and by our fans on Facebook. 


Not mentioning the cancer

CancerConnection.ca community member “pulmec” said they haven’t discussed their cancer experience with coworkers who knew about their surgery, mostly because pulmec hasn’t been asked about it. “I’ve always thought they’re on a need to know basis and they don’t need to know. I don’t want pity and there is a definite pity that comes with being a victim and survivor of cancer,” pulmec wrote. Similarly, pulmec hasn’t told most of their extended family that they had cancer, because most didn’t ask pulmec about the biopsy results. “In a nutshell, I avoid the stigma by just not telling people what I’ve been through,” pulmec said. 

Another community member, “cancertakesflight”, spoke about avoiding talking about her cancer experience during job interviews, even though what she has accomplished on her cancer journey may be the best illustration of her strength, conviction, work ethic and organizational skills — all traits that employers look for in new employees. “Unfortunately, I don’t say any of that. It makes people uncomfortable. It is also a flag that I may miss work for appointments or that I will get sick and won’t be able to meet my commitments,” cancertakesflight wrote. 

On ParlonsCancer.ca, French community member “Passiforte” shared that people who used to gravitate around her now avoid her because she reminds them that life is fragile. Previously, people would offer help, but now if she calls them just to talk, they say they are too busy and don’t have time. Passiforte said her only hope for the moment is that she will reconnect with people at a later time. 


Blaming the patient 

Oftentimes, people living with cancer will be made to feel as though they are at fault for developing the disease. This is especially true for lung cancer patients, who are often confronted by people who ask, “Were you a smoker?” 

Facebook fan Colleen said she deals with the stigma of lung cancer this way: “I cope by informing them and every d*** person I can you do not ever respond to a person with cancer with ‘do you smoke’; that is beyond cruel. In addition anyone can get lung cancer I tell them and do. I also tell them many who get it have bloody hell quit years ago.” Colleen went on to write that the stigma associated with lung cancer results in it being poorly funded and leads to the shaming of patients and depression fall out. She asked cancer charities not to tie lung cancer awareness month to campaigns to quit smoking, which only further promotes the stigma surrounding lung cancer, she said. 

Online community member “Dahlia” said she feels, in a roundabout way, the many false claims of “great and easy solutions for cancer” promoted on the Internet is another way cancer patients are blamed for having the disease. “I find this stupidity plainly insulting and in a way it tells me: ‘What is the matter with me? Couldn’t I have figured this out a little better?’ It does not help when truly in pain,” Dahlia wrote. 


Coping with the physical effects of cancer

Many of our French community members wrote about the “stigmata” of cancer — both visible and invisible — such as scars, fatigue, decreased strength, and depression. Cancer patients often experience internal stigmatization as a result of the physical changes caused by cancer and treatments. 

“Hocmundo” shared that she does not like what her body has become and she hardly recognizes herself now. She said that cancer broke something in her, psychologically, and every day it is a battle to regain control of herself and to try to become the person she was before and who she liked so much. Other French community members also expressed a similar difficulty in recognizing themselves now that they’ve had cancer and gone through treatment. 

Struggling with depression, “Etoilerose” wrote she is still able to see the beauty of life, but she has to fight to keep her head above water. She said she feels she has two lives, with everyone seeing her cheerful outer image except for her husband who knows that she lives with a cruel inner reality, Etoilerose wrote. 

Stigma affects cancer patients at many different stages in their cancer journey, and it can help to speak with others who are going through a similar experience. Take part in our discussion by clicking here




 




Comments

I didn't talk about cancer much during my treatment. As for the physical, I wore a wig when I was with the general public and baggy clothes to hide the weight loss (60lbs, so it was evident). I did this mainly for me. I didn't want the questions or the poor dear looks. More often, people who knew would ask me about it. I realize it makes people uncomfortable. So, I have to admit that I never dealt with stigma by ensuring that I was in control of the interaction. I was still me and I needed people to remember that. There was really only one thing that upset me. Sometimes when I would tell a person that I had breast cancer, they would tell me how lucky I was because I had a good kind. I knew what they meant but, they still sounded like arses.
  • Posted Sun 03 Jan 2016 12:23 AM EST
How a person relates the information, and to whom, determines the effect of the news. I think that what I think about the disease comes through to a listener, and affects their thoughts. I cannot control their reactions of course, and they needn't satisfy me in any way with their notions. Bottom line, we all know we will each depart one day but we each have unique versions of what that means. To transcend the mystery is a major and unlikely happening- so much easier and 'expedient', to avoid. C'est ca.
  • Posted Sat 02 Jan 2016 02:30 AM EST

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