Conversations About Lung Cancer – The negative stigma associated with Lung Cancer.
Conversations about lung cancer always brings up the topic of smoking. It’s the first question asked of me after someone learns of my cancer. And because there is still such a negative stigma associated with smoking and lung cancer it makes me feel diminished for a habit that long since passed the easy to quit stage. I felt a specimen in a science class, spread out on a lab table ready to be dissected.
Why is the reaction to lung cancer so different than other cancers? Has science failed those of us who are lung cancer survivors with cures or preventions or treatments? Yes! Maybe if I hadn’t smoked I wouldn’t have gotten lung cancer. But there are people who haven’t smoked who get it and there are people who get stomach cancer from smoking, but not all people do and there are people who get esophagus, larynx, mouth, throat, kidney, bladder, liver, pancreas, stomach, cervix, colon, rectum as well as acute myeloid leukemia (1–3) cancer from smoking but not all do. I wonder if all cancer patients asked the same question. “Did you smoke”? “Are you a smoker”?
Not many conversations about lung cancer and smoking took place in the early 40’s. There were studies that were published in the early 1950’s showed a link between cigarette smoking and lung cancer. Cancer was the first disease linked to smoking. For those of us born before this knowledge we actually received instructions from TV ads and magazines on how to look glamorous while smoking, which cigarettes were tastier and less harsh.\
I remember practicing in front of my bathroom mirror. I was learning to be a pro! We were long into nicotine’s addictive powers by the time that lung cancer and smoking were connected. And then because we didn’t quit and then got lung cancer, the thought was and I fear still is, that I caused my lung cancer. I brought it on myself and I was looking for it. I had been stigmatized and blamed for not quitting. Tobacco companies weren’t to blame. I was to blame for my disease.
It wasn’t enough that I already felt deep shame and horror that my family would have to go through this with me but it was also like an “I told you so” knife had to be inserted too. Did I deserve my cancer more because I had smoked, maybe more than some one with a different cancer? Of course not.
I realize that one reason that there is so much negative stigma directed toward lung cancer patients is that a lot of people are not aware of how many people who have lung cancer have never smoked. In my opinion this reinforces the bias against lung cancer. Conversations about lung cancer have to include the fact that there are other reasons that cause lung cancer and people who suffer from it, due to heredity (gene mutations), air pollution, asbestos, radon gas and second-hand smoke suffer greatly too. Shaming and guilt needn’t nor shouldn’t be a part of any person’s illness.
I did not start smoking so that I could get cancer. Certainly, I never wanted it. My shirt didn’t have a target on it to advertise target practice. I was a young impressionable naive girl wanting to fit in and believe believed the hype of the ads and commercials.
“When someone is forced to heavily emphasize that they never smoked, the message being sent to the other 85 percent of lung cancer patients who are smokers or former smokers is, ‘You are the ones that deserve lung cancer.’ While I know that’s certainly not the intention, focusing on stories of never-smokers who get lung cancer as a way to validate the disease isn’t productive and hasn’t worked in the 15 years I’ve been trying to change the conversation.” by Jill Feldman on Longevity 2015.
I have learned that shaming and guilt are two different things. Guilt concerns a behavior that I did. It means, to me, that I did something that caused harm to myself and made others feel terrible. And yes, I have felt that very plainly for more than 20 years. When guilt hits me, I feel like I have dropped my heart and can’t find it. And with each recurring cancer my guilt of having smoked haunts me like a nightmare, an echo of something that I chase but can’t catch or stop, I can’t put my hands on it, can’t kill it.
My guilt is that every time I have cancer my son and husband have to walk me through everything, all the tests, fears, anxieties and expensive time-consuming trips to Boston where I am treated. I look in their eyes and see the pain of not knowing how to help me, of feeling lost, of not knowing what to say or do, trying to take my lead but with hesitation. “Is this the right path to take?” “Do we need a second opinion?”.
Cancer takes a part of me that I can’t get back, every time. I am more worn down, less happy, more depressed and I am sick and tired of the fight. Mentally I have less to give. My guilt asks if I haven’t proved myself yet? Haven’t I paid my dues? It drops me down a well, pushing and pushing. I’ve already gone so far. Someone once said that the seeing someone suffer is one of the most heartbreaking things. By smoking I have created a family dynamic that has tied my hands and theirs. I am truly dependent of my doctor’s advice, technicians, lab assistants, image takers and reliable transportation. By my feeling powerless, my son, sister and husband do also.
Shame is much different. It is a feeling that people give others to make them feel like failures and are successful. “So, you are going to go to THAT movie, with THAT on?” “I thought that YOU already read the book.” I recently took part in a conversation about lung cancer. The gist was that a lot of people are insensitive in what they say to people with lung cancer. Shame says, “You aren’t good enough because you failed and I know it”. Shame shoots arrows on the self. It tells us that I am bad, naughty, not good enough. It’s a disapproval of a behavior that I have shown, it can be subtle or very obvious. In conversations about lung cancer I hear, “as you already know…”.
The person shaming wants you to know how smart, intelligent, pretty, and sensible they are. They want to one up you, boast and have power over you. It’s a sepsis. They capitalize on your downfall. Sometimes they might not even be aware that they are doing it, or they do it because that’s what they heard and don’t know what else to say.
In conversations about lung cancer I love to give opinions, having had so much experience myself. Most of my opinions are based on what I’ve learned, the hard way. I usually tell people to try to ignore other’s opinions. To listen to their own instincts and their medical people. I do think that opinions are very hard to keep to yourself. But you have to be very sensitive to what a person is going through at the time.
When someone is very ill and vulnerable it is not the time for opinions in any conversation about lung cancer. I hate it when people are talking about lung cancer and make suggestions and give opinions on how they should eat, drink, or live. I have learned both and have learned to shut up (mostly). People mean well but I have learned to speak up. I need to have the power to live the way I want. One of the first things that I heard was religious. “I pray that God is on your side.” “Ok, why wouldn’t a God be on my side? Oh that’s right, I’m bad.” When I asked my surgeon about diet and foods that I shouldn’t eat he said that cancer was still around. I understood it to mean that if there was a successful diet, than cancer would no longer be.
There are so many things that people can say when they learn that someone has cancer. I don’t want anyone to yell at me or do an “I told you so.” It’s rude and hurtful and actually none of your business what might have given me cancer. I never wanted it whatever it was. Secondly if you have nothing constructive to say or don’t know me that well don’t say anything, just don’t. You can look sad or touch me softly on my shoulder.Try and sense where the person’s head might be. My twin sister, when she found out just said my name, “Oh Merry.” And that said it all.