Over the last week or so, I’ve noticed (or had brought to my attention) a series of articles discussing a phenomenon related to alternative medicine that I don’t believe that I’ve addressed before, at least not directly anyway. I had filed some of these in my folder of topics for blogging, but somehow never got around to them because I let so much time and blog verbiage be dominated by a discussion of how Andrew Wakefield infiltrated the Tribeca Film Festival, only to see Robert De Niro reverse his decision a few days later and yank his film from the festival, after a brief attempt to defend the choice. Then, of course, I couldn’t resist having some fun with the conspiracy theories that flowed afterward. And, before I get into the heavy stuff, I can’t help but mention a little comic relieve, mainly that Wakefield’s film Vaxxed will be showing at the Angelika Film Center opening tomorrow, April Fools Day.
That diversion aside, yesterday as I contemplated what to blog about it I saw that Steve Novella had written about the very phenomenon I had planned to write about and almost thought I had blown my opportunity. Far be it from me, however, to let a little thing like that stop me, particularly when the topic is one that I don’t recall having directly addressed before and relevant to cancer patients and alternative medicine. I’m referring, of course, to the tendency for well-meaning people, many of whom are often woo-friendly, recommending all sorts of remedies to patients suffering from serious, even terminal illnesses.
The article that brought my attention to this was an advice column, Ask Amy: How do I keep people from offering alternative ‘cures’ for my husband’s advanced cancer? A woman who bills herself as “Upset” (as well she should be) describes her husband being diagnosed with stage IV pancreatic cancer, failing two chemotherapy regimens, and facing a dismal prognosis of being unlikely to survive more than a year from his diagnosis, which, given that he had already undergone two courses of chemotherapy, would only be months. If you’ve ever had a close family member in this situation (or if you yourself are facing a serious or even terminal, illness yourself), see if you recognize this situation:
People we hardly know come up to us and tell us how various alternative medicine approaches (multiple herbs, specific diets, etc.) “cured” their loved ones and/or tell us how their neighbor, co-worker or friend has survived five, eight or 10 years or even that “they can cure cancer now.”
I have tried to simply say “that’s interesting” to suggestions of alternative therapies and “how fortunate for him or her” to the others but, unfortunately, these people want to continue telling us what we should be doing or insisting that my husband can live a long time.
Because I see on a daily basis the deterioration in my husband’s condition, I find these comments and unsolicited advice extremely distressing.
In an attempt to end one of these unsolicited conversations, I told someone that they did not seem to know much about pancreatic cancer and walked away from them. I was later told that I was being rude. Can you suggest a polite way to shut these people up so they do not add to my stress and grief?
First, of course, it is not Upset who is being rude. It is these well-meaning believers in various forms of quackery who insist on continuing to make their suggestions, even though Upset has made it clear that they are upsetting, not helping, her. At the same time, they are acting out of what they perceive to be good intentions, a motivation to help and, in helping, to potentially save a life. After all, if you really believe that a treatment you know about can cure advanced cancer and you have a friend or acquaintance dying of cancer or who has a loved one dying of cancer, wouldn’t you feel obligated to tell that person about it and try to convince the ailing person to try it? When you look at it that way, there really is a problem in dealing with such people if you happen to have a loved one with cancer, the most common precipitating illness for such misguided attempts to help, or another life-threatening disease.
Unfortunately, people like this make their suggestions so based on misinformation. Usually this misinformation is based on anecdotes about which they have incomplete information or that represent misinterpretations of what really happened of the sort that I’ve deconconstructed more times than I can remember on this blog and, when critically analyzed, don’t actually show that the alternative treatment cured the cancer.
Amy’s advice was reasonable. Pointing out that Upset should remember that these people’s motives were good, she also suggested:
But please — do not engage in these conversations about miracle cures, even to the extent of pretending to listen. Look the person in the eye, say, “I think you’re trying to help, but this conversation is making things much harder for me, so please — let’s stop now.”
This is about as good an option as there is, or perhaps I should say this is probably the least bad option.
A couple of days later, Steven W. Thrasher hit the same notes in more detail in an op-ed published in The Guardian. Thrasher lays it on the line immediately from the very first sentence:
If you’re a religious person, for the love of God, don’t tell someone with cancer that if they’d just drink juice (or take vitamins, or pray or have a “positive attitude”) that they could cure themselves.
And if you’re not a religious person, for the love of reason and decency, don’t tell someone with cancer any of these things, either.
The motivation for this article was the second anniversary of his sister’s death, who suffered from a rare sarcoma for 15 years before finally succumbing two years ago. Thrasher nails something about alternative medicine in general, and alternative cancer cures in particular, that I’ve been emphasizing for a long time, having written about it as recently as last week. I’m referring to the mentality that implies that all cancer is curable, if only the patient would only do the “right” things, pursue the “right” natural treatments, and have the “right” positive attitude. As I’ve discussed before many times, this attitude is very much like The Secret, the New Age mystical belief system that claims that you can have anything you want if you only want it enough and have a positive attitude. Basically, at the heart of The Secret is an idea known as the Law of Attraction, which states that you attract from the universe what you think about and desire, or, as one Secret maven put it, “Thoughts become things.” In other words, your mental attitudes draw people and things of like intention.
While this is trivially true in one way that has nothing to do with the mysticism of the “universe” sending you things because you want them and/or have a positive attitude, it also has a dark side. That dark side is the flip side of the message of attracting good things to yourself with desire and a positive attitude. Specifically, that flip side implies that if you don’t have good things or are sick that you’ve somehow brought it on yourself through your desires and “negative” attitude. In the case of disease, this has particularly pernicious consequences. While on the surface it might seem “empowering” to believe that you have the power to cure disease and make yourself healthy, that dark flip side to “Secret”-like thinking is that if you are still dying of cancer you brought it on yourself and/or just don’t want to be cured badly enough. It’s just as I said last week. When alternative cancer cures don’t work, it’s always the patient’s fault for not having done it correctly or not having tried hard enough.
This is basically what Thrasher describes:
Over the years, it was painful for me to see people tell my sister (and me) that she could just cure herself if she really wanted to. Didn’t she know that if she just drank lemon juice every day she could wipe out her cancer cells? That if she’d just watch that Netflix documentary The Gerson Miracle she’d be OK? That if she were only willing to take vitamins, or eat raw food, or do yoga or look on the bright side of things, her illness would go away?
It’s The Secret in action, and patients suffering from cancer and their loved ones hate it—for good reason. In fact, Thrasher goes beyond that and characterizes such offers as “act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer.” I’m not sure I’d go that far, but then I haven’t experienced what Thrasher has experienced. True, my mother-in-law died a horrible death of breast cancer seven years ago, but I heard very few offers of alternative medicine cancer cures. Perhaps that’s one advantage of being known among your friends for writing a blog like this. I don’t know, however, how many suggestions of such “cures” my mother-in-law endured before the end.
Thrasher lists three reasons why he thinks these offers are acts of “violence.” Reason one:
First, it’s condescending. If lemon juice really cured cancer, don’t you think we’d all be dancing around citrus trees? That lemonade would be traded on Wall Street and hedge funds would be peddling lemon-flavored credit default swaps? More importantly, when someone has had cancer for months or years – maybe living through hours of doctor appointments, days in hospitals and months in bed – don’t you think they’ve had time to consider every possible option with the seriousness their own mortality deserves?
I frequently point out to the conspiracy theorists who think that “they” are keeping “natural cures” for cancer from you in order to make money that we who take care of cancer patients would be overjoyed if someone could demonstrate that lemon juice (or something else as simple) cured cancer. I also point out how impossible such a conspiracy would be to keep secret given how common cancer is and how pretty much everyone who lives long enough will witness a loved one die of cancer. Do such idiots really think that, if we knew of a cure, we’d keep it from our family members and friends? Then, once out, the cure would be everywhere. Basically, no group as large as scientists, physicians, and the pharmaceutical company could keep such a thing secret for very long. It’s utter nonsense to imply otherwise.
Reason number two is one manifestation of The Secret:
Second, it could be argued that people giving advice are just trying to “do something” and kindly offer help. But I reject this: if you want to do something to help someone in distress, as George Carlin famously riffed, unplug their clogged toilet or paint the garage. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death. You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.
Exactly. Reason number three is a variation on the same theme:
Finally, giving advice to people with cancer blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. As the authors Barbara Ehrenreich and Sarah Schulman have shown, we have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them. Having cancer or caring for someone with it understandably causes fear, anxiety and depression. Expecting someone to have a Positive Attitude™ when they are facing mortality, or telling them they’ve missed a simplistic way they could have avoided their fate, further isolates and shuns them.
Again, it might seem “empowering” for people to think that they can cure their cancer with magic herbs, shooting coffee up their butts, thinking positive thoughts, or doing yoga, but it’s not. It tells people battling cancer and losing that they didn’t do enough, that they could have prevented this if only they had wanted it badly enough and had a positive enough attitude, that their impending death is at least partially their own fault. Believe me, cancer patients ask themselves every day if there was something they could have done to prevent this or something they can do to arrest the inexorable progression of their disease. In the case of diseases linked with various lifestyle choices, such as smoking, the regret can be overpowering. Even in the cases of cancers much more weakly associated with lifestyle factors, cancer patients are constantly asking themselves, “Why me?? They don’t need to hear the implied answer from well-meaning friends of, “Because you don’t want to get better badly enough to chase after these cancer cures I’m telling you about.”
The third article showed up a couple of days ago and describes another price that is paid. We’ve seen this before in posts I’ve done, but this story is about a famous Indian actor who appeared in Malayalam films who unfortunately developed cancer at young age. It was initially successfully treated, but recurred and ultimately took his life at age 35. After his recurrence, he experienced exactly what Upset experienced, only on a grander scale because of his fame:
Death may be the ultimate equaliser, but famous people have to deal with fans eager to cure their stars. Circumspection when it comes to free advise is not an Indian trait. In the age of Facebook and Google this enthusiasm often turns to unhindered medical ‘knowledge’ and personal stories based on wishful thinking not science. Everybody has a cousin in America and an aunt in Coimbatore as well, with several tumours disappearing to the surprise of western medicine.
Jishnu Raghavan had his dose as well, of people asking him to try remedies like Lakshmi Tharu (simarouba glauca) and Mulathu/Mulethi (graviola). He tried the various cures and as he wrote on his Facebook page, he found himself in a dangerous spot. Not wishing to hurt his followers, he left a note saying goodwill is one thing, holding out hope of cure is quite another especially as he was battling for life.
As a result, Jishnu posted this on Facebook last April:
Friends I am getting a lot of suggestions to take lakshmi tharu and mulatha.. This was popularised through social media…I took the risk of trying it on myself and many other popular alternate medicines suggested by friends and family.. It couldn’t control my Tumor and rather took me to a very dangerous situation.. I will never suggest it as an alternative to the already proved medication.. Maybe after a formal medication all these can be used so that it doesn’t return back.. I wish and pray there is further study and research on all these to create a proper medication for cancer..Please don’t advice this to anybody as an alternative to chemotherapy or any formal medication and mislead people.. It is very dangerous… And never believe forwarded messages in social media blindly.. I was declared dead a few months back by social media and here I am messaging you..
It’s not as though Jishnu appears to be in any way anti-alternative medicine either. The first comment that shows up after this post is him telling his fans that he doesn’t mean alternative medicine is wrong and that he understands “that we have diverted ourselves from our taditional living methods we are getting all these kinds of deseases.” He even mentions that he would use “ayurveda and homeo to deal with the aftereffects of the treatment that i am going through now and see to it that i follow ayurveda for a better life ahead.” That he felt obligated to say these things after asking his fans to stop sending him recommendations for alternative cancer cures gives you an idea of the effect these stories have on cancer patients. They know that these recommendations come from a motivation to do good, to help save them. They also know that these alternative cancer cure testimonials can give false hope or simply put the onus on them for being sick.
As Steve Novella observes, seriously ill people do not need your well-meaning medical advice. If they want medical advice, they will ask you for it. Do not offer it unsolicited, as it only makes them feel worse about their situation, in essence shaming them for being ill and not fighting “hard enough” or having a “positive enough” attitude while making you feel better about yourself. Instead, offer them the help they need, whether it’s to watch their children or drive them to a doctor’s appointment. George Carlin, it turns out, was right about this.