Monday, March 25, 2019

Blaming the Cancer Patient

Blame is too often a part of the response to cancer diagnosis, even from the most innocent voices.

For example, after I was diagnosed, a little boy from school came up to me and asked me very seriously what I "had done to get cancer."

I was taken aback, but he was just reflecting back the attitudes of the people around him. I'm sure many of the adults at the school asked the same question in their minds. I just told him, "I wish I knew!" and we chuckled and left it at that.

But what struck me was how many people NEED to believe that the cancer patient has done something to get cancer, and how early that belief gets started.

Healthcare Practitioners are no different in their need for blaming. When I was incredibly sick just before my diagnosis, I saw my acupuncturist. I shared that I likely had cancer and I had an appointment the next day to find out. We worked on help in appetite, nausea, sleep and healing. She was extremely helpful, and I was able to keep down some food that night for the first time in days.

And then the other shoe dropped.

She unleashed the Blame Card, the You-Brought-This-On-Yourself Whammy that is so common in cancer. And it really was infuriating. She said, "Cancer is a wake-up call that something needs to change." In other words, it was my fault I had cancer.

Really?!? Really?!!???!

This was the absolute wrong thing to say to me. I don't see what I could possibly have done to bring on lung cancer.

I never smoked, not even once. I know sooo many smokers with years of smoking and other crap behind them that didn't get lung cancer. How come I did?  As far as I know, I had no exposure to asbestos, radon, or other harmful chemicals. So what did I do to "cause" my lung cancer?

I'm guessing she was hinting at my weight. Care providers always are; weight is the favorite punching bag of medical professionals. People often assume that "obesity" is a part of the cause of my cancer, but it isn't. I spent quite a bit of time researching it. Obesity is NOT linked in ANY way to lung cancer.

I was quite angry at what she said, but she is a nice person who has been very helpful to me many times so I held back. I replied that sometimes I think cancer can be a sign that something needs changing, but that most of the time I think it's just the random nature of genetics or bad luck or something we just don't know about yet. Then I pointedly changed the topic and moved on. She took the hint.

The Blame Game

I've seen this often in medicine, especially alternative medicine. Any disease must have been brought on by yourself through bad behavior. You didn't eat enough vegetables, you didn't get enough exercise, you consumed gluten, you ate nightshade vegetables, you ate sugar, you had processed foods, your diet was too acidic, or whatever the latest health conspiracy theories are floating around out there.

Medical "news" thrives on trendy stories of how to lower your risk for cancer or heart disease. Problem is, the stories are often contradictory and change over time. One day coffee is healthy for you; six months later, coffee is bad for you. Wine is good; whoops, wine is bad for you. Eggs are bad, actually eggs are fine; nope, more than a couple of eggs a week are bad. Remember when nuts and avocado were  on the "mustn't eat" list? Now they are superfoods. For a long time, margarine was promoted as "healthier" for you than butter; now we know that margarine is is one of the worst things you could consume. I don't know about you but I am sick of all the seesawing. JUST EAT SENSIBLY and quit blaming. We really don't know a whole lot about what causes what. 

Dr. Monica Barghava writes in the Washington Post:
In part, our culture of blame is an extension of American culture, which tends to hold the sick and impoverished personally responsible for their situations.
Not only do patients blame themselves for getting cancer, the opposite is true; they indulge in "magical thinking" that healthy behaviors will protect them against cancer. Patients newly diagnosed with cancer often list a litany of healthy behaviors they practiced, as if this should have been a shield against developing cancer. They are shocked that they got cancer despite being vegans, despite eating low-carb, despite not smoking or not drinking, despite running marathons and ultramarathons. As one person said: 
For years, I was the healthiest person I knew. I ate a healthy diet and didn’t drink, smoke or use illegal drugs. I ran marathons and ultramarathons, some as long as 100 miles. I lifted weights and went to yoga classes.
Yes, you can be "super healthy" and still get cancer. People who eat lots of broccoli and kale and do triathalons still get cancer. And yup, the lazy sloth next door who eats nothing but french fries and Twinkies may not get cancer and may even outlive you. The world is not fair. "Good" health behaviors don't guarantee anything.

Blamers often operate from the world view that if you are good enough, healthy enough, exercise enough, and eat well enough, then nothing bad will happen to you. Conversely, if something bad does happen to you, you must have somehow brought it on  yourself. The idea that you get what you deserve is part of the "Just World" hypothesis. Charlotte Huff describes it in Slate Magazine:
Judgments about behavior not only unsettle and stigmatize the patient, but reflect the interrogator’s own insecurities. Frequently, those disease detectives are attempting to regain a sense of control amid the inherently random and sometimes unjust world that we all reside in, according to researchers who have studied stigma. Psychologists refer to this as the “just-world hypothesis,” a bias in thinking and perception that was first described by psychologist Melvin Lerner and colleagues more than four decades ago, and which has since been documented in numerous books and articles... “I think that in one part there is a fundamental assumption in our society that the world is a just place, and that bad things don’t happen to good people,” says Gerald Devins, a stigma researcher and senior scientist at the Ontario Cancer Institute in Toronto. “And I think when bad things happen to good people, it’s threatening to everybody.”
The Blame of Bad Karma

Another school of thought is that cancer is brought on by bad thinking, negativity, stress, or by unresolved anger, resentment, or grief. In other words, "you did this to yourself" to learn a life lesson.

Some people have even theorized that there is a "cancer personality" which tends to repress anger or grief and has difficulty managing stress. It's the repression of feelings that leads to the cancer that's eating them alive inside. 

One cancer patient recalls being asked by an alternative practitioner, "‘Why did you have to bring cancer on yourself? Why did you have to manufacture your tumor?’"

I hate that healthist mumbo-jumbo. Yes, there is a mind-body spiritual connection and sometimes we behave in a way that impacts our health negatively, but I don't think it's always or even usually connected. I think that most of the time sh*t just happens. 

Remember that young adults and even children get lung cancer. Tell me what a child could possibly have done to give themselves lung cancer!?!? What crime did they commit to bring on lung cancer? It's ridiculous to suggest that cancer is always brought on by bad behaviors or negativity or as a "life lesson." 

If cancer is mostly something that is brought on by bad karma or poor behavior or whatever, then there's a whole lot of people out there who don't get held accountable for their bad actions. And there's a whole lot of people who are getting the death penalty despite having done nothing wrong.

NO. Simplistic answers do not serve us well, but unfortunately it's what many people want. 

The Illusion of Control 

As humans, we have a strong need to believe that everything has a clear cause and effect. We need this because it helps us make sense out of the world, to impose order on chaos. It helps us explain why bad things happen to others and how we might prevent bad things from happening to us.

The same goes for illness. People don't want to believe that illness just happens. They want to believe that the sick person has done something to cause their illness because then that illness can be avoided with the right behavior.

Healthy people also want to believe that they have earned their health through their own hard work and virtuous lifestyle. They want to believe that if they are vigilant enough, careful enough, and work hard enough, they can avoid serious illness. If someone gets cancer, then they must have fallen down in some key health behavior.

Blaming someone for their cancer gives the blamer the illusion of control. That person did X and got cancer; if I don't do X, I won't get cancer. 

But of course it doesn't work that way. It boils down to fear.

People blame others for their conditions because they can't admit the truth that bad things just happen, that the world is full of random chaos, and bad things sometimes occur.

Few people are ready to acknowledge the complete lack of control we have over our lives; it's terrifying to contemplate how random the world can be. So we use blame to maintain our illusion of having control over our lives.

Martha Carlson writes in Cure Today:
I firmly believe that blaming people for the things that befall them, as though they have total control over every aspect of the events in their lives, is just a trick of the blamer’s mind — a way to deny that anything bad could happen to me. ... It’s a false sense of power that only serves to minimize what patients are experiencing.
Blaming Yourself: Personal Behavior

Sometimes it's not others who are blaming you for your cancer. Sometimes you blame yourself.

People can be pretty hard on themselves about their cancer diagnosis. They blame themselves for having gotten cancer. They may search in their background for something that might have caused it, or might at least have added into their risk.

And it's complicated because sometimes things might indeed have added to their risk, like using a tanning bed or being exposed to asbestos. But even when people expose themselves unnecessarily to risk, the picture is still complex.

Smoking, of course, is the ultimate blame factor. Many people smoke, but the fact remains that even so, they don't deserve lung cancer. No one does. In fact, the majority of those who smoke don't actually even get lung cancer. One Canadian study from the 90s found that only 17% of male smokers actually got lung cancer. In a Just World hypothesis, that rate would be 100%, but it's not. Not all smokers get lung cancer --  not even most of them do. Jane Brody of The New York Times notes: "Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck."

If life were just, non-smokers would never get lung cancer, but we do. It's incredibly unjust but it's reality. Do we need to dwell on it?

The truth is that we just don't know why some people get cancer and others don't. Behavior and genetics and environment interact in complex ways that we don't yet understand. Behavior is not completely irrelevant but is hardly linear towards causing cancer.

The self-blame is a distraction. Let go of it and focus on your own wellness, your family, and your own spiritual journey. Take care of your emotional business before it's too late:

Experts, such as renowned scientist and author Jon Kabat-Zinn, emphasize that blame only robs an individual with cancer of the present by directing their attention on the past—it undermines them when they most need to focus their energies and face the reality of having a life-threatening disease.
Why We Really Get Cancer

Why then do we get cancer? No one really knows for sure, and that's what's scary because it could happen to any of us at any time. 

Most likely cancer is a combination of genes and environment. From a British article:
Cancers start because of a mistake in copying DNA when normal cells are dividing and growing. Several of these mistakes have to happen before a cell becomes cancerous. Although some of our unhealthy behaviour can increase the risk of mistakes in our genes, the mistakes can also just happen by chance as our cells divide and grow.
Our genes may predispose us to certain issues, or the genes that make repairs to replication errors may stop working well for some reason. Or something in our environment may negatively affect our genes and how accurately they reproduce. Exposure to things like radiation, heavy metals, and toxins can certainly damage DNA.

A team from Johns Hopkins University writes:
Random mutations are the single biggest factor in causing cancer...About two-thirds of the genetic mutations that lead to cancer happen simply because of random errors made as cells divide and not because of diet, chemicals or inherited genes.
The predominant message from the media and public health campaigns is that you can control your risk for cancer if you just refrain from smoking, exercise regularly, keep a "normal" weight (normal for whom?),  use sunscreen, and eat right. Every day in the media there are toxic messages about cancer, designed to make people feel anxious so companies can sell more newspapers and pharmaceuticals. Small wonder, then, that so many people feel so guilty when they get diagnosed with cancer, as if they brought it on themselves. 

Is this kind of self-blame really helpful? Does it really prevent cancer or just make people feel bad when they get it? Doesn't it just give others permission to feel self-righteous when they don't get cancer, even though it may have nothing to do with anything but luck?

Martha Carlson writes in Cure Today:
...When I hear about the latest finding that links something I do or have done to my cancer, I think about how none of that can really matter to an individual patient. We each do the best we can. Sometimes we fall in line with the ever-growing list of recommended behaviors. Sometimes we don’t. Either way is OK.
Research about risk factors applies to large groups. No one can say what caused or didn't cause any one person's cancer.

No one lives the perfect lifestyle. Do your best and be as sensible as you can, but forgive yourself for not being perfect. Don't jump to conclusions. Sometimes there's a connection between lifestyle and cancer but not always. Sometimes sh*t just happens, and sometimes no one really knows why.

Quit blaming the cancer patient. Quit blaming yourself. Quit BLAMING, period. Pointing fingers does more harm than good. Acknowledge that cancer is sh*tty regardless of cause and that cancer patients all deserve our support, then move on to act in more productive ways.


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