Last week an author I follow announced on his Facebook page that a recent scan indicated that the radiation treatment he had undergone for stomach cancer has not been effective and the cancer had spread to his lymph nodes. Almost immediately people began to comment offering a wide variety of alternative medical cures this author should have done or try. It was utterly predictable. How do I know? Because I experienced the exact same thing.
In September 2009 I was diagnosed with malignant melanoma of a significant depth that increased the odds that it had metastasized to my lymph nodes so I had a 5 hour long sentinel lymph node biopsy. Three years later I was diagnosed with uterine cancer and had a hysterectomy. In both cases the cancer was detected early enough that no further treatment other than surgical removal was necessary. While my doctors , nurses and hospital staff prepared me for the realities of surgery, nothing prepared me for the harsh realities of being a cancer patient.
No one warns you that, if you get cancer, a friend and even a family member may abandon you out of fear of their own mortality or simply a selfish need to not be in close contact with someone who triggers painful memories. In the season of life when you most need support from people you would rightly assume would provide it, you discover that these few individuals have distanced themselves from you. The relationship you thought you had been building for years turned out to not able to survive your cancer crisis. The good side, at least for me, was that a few casual acquaintances stepped up and came along side of me offering encouragement and prayers, if only for a season. I still tear up in gratitude when I recall their kindnesses.
But far more prevalent are the people who, unsolicited, offer you advice on how you should be treating your cancer. First it was too much sugar, followed by exhortations to not eat “white foods” or that my body was too acidic and I needed to make it more alkaline. One Ob/Gyn doctor I saw reduced me to sobs in his office by stating emphatically that my cancer was due to my lifelong consumption of animal fats. Had I tried Kangan Water? An all raw vegetable diet? Did I know all fruit was cancer causing? I’ve had people tell me how they would have self treated my types of cancer despite the fact that surgery saved my life. The worst was the referrals to the Truth About Cancer series. Several times a year I received invitations to watch the series by friends who believed I would somehow benefit from completely disregarding my doctor’s treatment plan and learning the truth from a biased man who has no education, career or research credentials in medicine at all.
There was a dawning realization of how much victim blaming is at the core of this advice. You wouldn’t have gotten cancer is you had not eaten sugar/meat/processed foods/starchy foods/etc. You wouldn’t have gotten cancer at all if you had been drinking this special water or only organic vegetables. And if cancer comes back, it’s because chemo will kill you and you chose to get it. Everything about your cancer is your fault and while that may be true of some cancers due to exposure to asbestos or smoking, 2/3rds of cancer is genetic luck of the draw. And even if true, no one needs to hear that while struggling with a possible life-and-death crisis.
Being a fact checking person, I did research many of these suggestions but what I kept discovering just how lacking in peer reviewed science these supposed cures were. There was an emerging pattern of “experts” who had no experience what so ever in the field of cancer research, some were outright quacks and con artists. I followed research citations to their original sources only to discover fraudulent manipulation or outright lying about the data. There was a lot of fear mongering and victim blaming associated with these alternative medical treatments. No one warns you what happens when you reject people’s beliefs about the causes and cures of cancer. I’ve been asked, “How much are you being paid?,” implying I was a paid shill for Big Pharma. I rejected the conspiracy theories that the pharmaceutical industry knows the cure to cancer but is hiding it in order to make more money on chemo, radiation, etc. and that made me a stooge of the evil Big Pharma. To believe that tens of thousands of people employed in the pharmaceutical industry will die their own deaths from cancer or watch beloved family members die of cancer simply to protect the ability to make an unholy profit from toxic cancer drugs says far more about the people who believe this garbage than the alleged conspirators. But say that and someone will advise you to “get out of the Matrix”.
I am not alone in my observations. Steven Thrasher, in a recent article for The Guardian titled “Don’t tell cancer patients what they could be doing to cure themselves”, wrote that he had, “.. been hearing from friends with cancer and other serious illnesses that they are overwhelmed when concerned people lob suggestions at them for homeopathic remedies they ‘should’ be doing.” Like Steven, I no longer believe people have good intentions of trying to be helpful when they suggest these remedies. Steven considers it “an act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer.” Harsh phraseology but probably accurate when one considers that encouraging people to reject their doctors’ medical expertise and treatment plan can lead to death. My oncologist once told me that if HIPAA hadn’t prevented him, he could introduce me to patients of his who eschewed conventional, proven treatment for their cancer, sought alternative medical interventions, bankrupted their families and returned to him with the cancer so advanced that it was beyond treatment. All he could offer was palliative care. My cousin Larry dismissed his doctor’s plan for his very treatable prostate cancer and instead believed his chiropractor’s use of supplements, organic vegetarian diet and spine manipulations would cure him. Larry passed away December 8, 2005.
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It’s not just cancer this applies to. I have a genetic disability (thankfully not life-limiting). I’ve lost count of the supposedly well meaning advice I’ve received – everything from drinking vinegar to trying some dubious ‘medication’ that they’ve picked up online.
I’m not justifying it, I’m really not. But I think some people just feel so helpless, that it’s their way of trying to help / regaining control / distancing themselves (i.e. I won’t get cancer because I don’t eat meat / only eat organic / etc.). It doesn’t make it right of course.
Also, your point about friends drifting away. After a recent cancer scare, I’ve experienced this myself. Funny how people you thought would do anything for you suddenly vanish. However I’ve also been on the other side of it: a friend’s daughter was extremely ill, and instead of stepping up to support her, I was so scared of saying the wrong thing or getting in the way, I said nothing. I did nothing. I thought about her all the time, but I became one of those vanishing friends. I am still ashamed of it. Our friendship did not survive, something I regret to this day.
What I’m saying, probably very badly, is that the majority of these people will be thoughtless – not malicious. I doubt knowing that helps.
For those with friends in this position: Ask if you can help. Let them know you’ll listen. Support their choices. And don’t push your own agenda.
And for those in this position, I’ve learnt to smile and say something along the lines of: I follow all the research about my condition, I’ve looked at all the treatment options, and I’m working with my doctors for the best outcome. If they keep pushing, I’ve resorted to saying ‘I don’t want to talk about this.’ And if they keep pushing (someone always does): ‘I’ve told you I don’t want to talk about this. Please respect that.’ And then I walk away.
I’m not comparing a disability to cancer. It’s just that I know what it’s like for me, it must be so much worse if you are actually at risk of death.
The same thing happens with death. My husband died, unexpectedly and very young, leaving me in a state of shock and with a 4 year old child. Besides a handful of friends, I was actively avoided and dropped immediately. People even crossed the street to avoid me, or ducked behind the shelves in the supermarket – anything, rather than have to make eye contact or talk to me.
On the positive side, my daughter has grown up into a cheerful, outgoing and confident young woman, despite the trauma of her early childhood!
Mary Anne, I am so sorry for your loss and I definitely get what you’re saying. It’s been 3 years since my mom passed away and hardly anyone ever mentions her. I have a couple of friends who will make sure to tell me when they’re thinking of her, or spontaneously share memories, and it’s like a balm for my soul. It helps so much to know I’m not the only one who misses her. I always tell my family, “you probably won’t make me cry by bringing up my mom, and if you do, so what? I want to hear your memories of her.”
While being laid off is nowhere near as bad as cancer and death, it was amazing to me how quickly my coworkers (and, I thought, friends) dropped me after I was laid off. When I see former coworkers out in the wild, they always say, “Oh, we miss you so much!” If you missed me so damn much, how about an email or text once in a while?
So true. Between DH and me we’ve been laid off about seven times and at this point we are basically untouchables. Guys, it’s not contagious! And we don’t need ‘helpful’ advice either like ‘well just keep applying for jobs.’
Obviously, unemployment is NOTHING like cancer, but I think the one thing you can learn from any kind of experience like that is empathy.
I’ve been friends with co-workers but when the job ends, usually the relationship does, too. I still think fondly of those people and would love to see them but there are new co-workers/people filling up that time now, and it would be impossible to keep ALL the relationships I’ve made over time, even if so many of them were wonderful. Between relatives and friends I could list a hundred or more that mean a lot to me but who I haven’t seen or communicated with for decades and probably never will again. If I expended that time I would have to neglect my new friends. Can’t keep both.
My stepfather was lost when my mom died and, suddenly, his social life came to a grinding halt. My mom did the inviting and phone calls, the gestures of friendship and so on, and my stepfather relied on that. We pointed out to him that if he wanted to see those friends he needed to copy what mom did. I think the realization of the kind of work that went into maintaining those relationships (which he had benefitted from without a thought) has hit home. He has made a very small effort to get together with one or two men friends now and has mostly resigned himself to a much more solitary existence. If he wants things to change, HE has to change to be more like mom, not expect his friends to change who they are. I think he understands that now.
Happened to me with divorce – I was dropped by some friends, and other people who I had not spoken to in more than a decade crawled out of the woodwork demanding chapter and verse of my sad tale. But they were not there to support me – they were there to gawk and get the dirt and find out what I did wrong so they could be sure it would never happen to them. It was awful, but it taught me who my real friends are and who was best left out of my life. I am better for it and so much happier
I agree, Jai. Whenever you have any kind of medical condition/diagnosis, people come out of the woodwork to give unsolicited advice or tell you about their second cousin’s best friend’s sister in law who had the same thing and she drank this special blend of tea and she is cured/has no symptoms, etc.
While I believe some alternative therapy and medicines can be beneficial, I’m always going to go with what the doctor says. That special blend of tea may help with the nausea cause by conventional medicine, but I’m going to get the conventional medicine, too.
I also agree with what Cleosia says below- If you didn’t cause your cancer/condition, that means anyone could get it, including them, so you must have done SOMETHING wrong. You didn’t follow the right diet, you didn’t exercise enough, your lifestyle choices were wrong and now you have this THING and it’s all your fault.
OP- my sympathies for what you have gone through. I hope your therapies and treatments are going well (or went well) and you are feeling better now. Positive vibes and virtual hugs to you.
Signed, the person who caused her 23 year old son to get hypothyroidism and anxiety at 23 because she didn’t eat enough root vegetables and exercise at noon when she was pregnant.
This happened to me, also. I was told to rub olive oil on my breasts and use a heating pad to “draw out” the inflammation and that there was no such thing as cancer–it was a ploy by Big Pharma to get my money. People should keep their opinions to themselves on such matters.
I am a vegetarian and did get cancer anyway. At that point I’d been vegetarian more than half my life. In a sense I think I was “lucky” in that there are no known risk factors for Hodgkin’s Disease other than family history — of which I had none, I’m still the only person in my family to have had it — and age. So I didn’t get the victim-blaming thing, since there was nothing specific to point to that I “could have” done differently.
What I DID get was foul-weather friends. They stepped up and supported me while I was in chemo. But the minute I learned I was in remission, they disappeared — which was REALLY obvious, since we had been sharing dinner every Thursday for the last six months. Suddenly when I ask what they want for dinner next week, there’s a lot of hemming and hawing and jee things are really busy right now. I finally twigged to what was happening after about two months of being the only one making an effort to see each other — efforts which were universally rebuffed. Silly me for thinking we were still friends. Apparently my life-or-death illness was All About Them and how noble they were.
Steve Jobs was a vegetarian since his early teens and it did nothing to prevent his cancer. He had a very rare, treatable variety of pancreas cancer but opted to try alternative medicine first. Dr. Patricia Bragg claims she is the one whose advice he sought. Probably too late Jobs discovered that Dr. Patricia Bragg is a huge fraud. She claims to be the daughter of health food pioneer Paul Bragg and even tells stories of growing up as his daughter. She’s actually Paul Bragg’s former daughter-in-law who was married to his son for less than a year. And that Dr.degree? Got it from a known diploma mill. She is a con artist.
If they were there for you at your lowest time doesn’t that make them good friends, not foul-weather ones? People have different talents, abilities, and resources – ideally, we would each have a variety of friends to meet our varied needs (and we would use our own gifts to give to our friends, but not try to be everything for them). Isn’t it possible that those friends put at least some part of their lives on hold as they felt you needed the attention more, and now that you don’t they are trying to cover what was left undone during your illness? Maybe helping someone else out right now, someone who is having their own crisis? Isn’t it even possible they don’t feel all that close to you but in your hour(s) of need they liked you enough to be there for you, even though it wasn’t pleasant for them? And now that things are “normal” your relationship goes back to normal, as in you aren’t all that close. By your description it sounds as if you were given a gift, not a curse of bad friends.
I agree some with Dee because I’ve been that friend. I have a busy life with three small children, including one with special needs, an ill parent, and a spouse who travels for work.
However, when the parent of one of my children’s friends was ill and in need of support, I shuttled kids, walked dogs, brought by some meals. We weren’t very best friends but are friendly and it’s what I’d hope someone would do for me in that situation.
I’m struggling with this. I adopted my landlady’s cat after she moved to a nursing home, and I always was “someday” going to bring her cat to see her. But I couldn’t because I didn’t have a car and public transit would be too stressful to the cat. Or when I did have a car the cat wasn’t clean (he didn’t groom any more due to advanced age). Or the cat was clean and I had a car, but I’d been planning to do something else that day. Or maybe I’d run into her son, who I don’t have a good relationship with. Or I’d interrupt her. Or or or.
The cat died a couple of months ago, and now … how on earth do I go see her and not be all “yeah, I was going to see you at some point in the last two years but never made the time, and by the way your cat’s dead.” I mean, obviously not exactly that, but it just feels so much like another reason not to visit. I never knew what to say or how to handle the situation, and it was “easier” to treat her poorly. Unfair, but easier.
Best advice anyone ever told me to do when you’re too scared to say anything…say that. People understand that it’s not an easy thing for anyone and that diseases, ESPECIALLY cancer scares people. Be honest with your friends, they’ll probably get it.
Even if you’re sure they aren’t quack cures, and even if you’re right about that–even if you’re a practicing oncologist yourself–your friend doesn’t want to be told “you should be doing X” while having lunch, or trying to talk about a novel they love, or even talking about scheduling medical appointments. For that last, I’d say it’s okay to ask “did you know $Charity will give you a free ride to the hospital?” or “would you like me to make that call for you?” but take a “no” graciously.
I also note, though the Admin didn’t, that the people who will get very upset if you reject their belief in organic diets or homeopathy have no qualms about rejecting someone else’s belief in surgery or Taxol. The people who accused her of being a shill were the ones trying to sell something, and she was just saying “I’m not interested” to their sales pitches. If I am ever diagnosed with something life-threatening, I’m going to keep the reply “I’m not getting a nickel for any of this. How much are you getting for trying to sell me on homeopathy?” in my back pocket.
Well, it’s your own fault because you didn’t go to the pinnacle of the Empire State Building, rotate three times while rubbing your belly and patting your head. Or it is patting your belly and rubbing your head.
The people who come up with the reasons YOU caused your own cancer are basically whistling past the graveyard and using these items they do or don’t do as the crucifix or garlic against the vampire cancer. THEY do/don’t do this so they can’t get cancer like you did.
Simple put, if you didn’t cause it yourself that means anyone could get it, including them. They can’t deal with that so they blame the victim.
I’m a 20-something cancer survivor– first of all I just have to say that your first line cracked me up– thank you. I’ve been having a hard time lately dealing with my diagnosis even though I’m cancer free and a year out from treatment and I appreciate that reminder that nothing could have been done.
But I also wanted to say– I 100% agree with you on the intentions of others. I try not to assume what others are feeling but it’s the only logical explanation I can come up with for the constant barrage of “helpful suggestions.” I STILL get them over a year out from treatment– I’m at the point where I firmly remind people that the surgery and chemo did, in fact, cure my cancer. Why on earth would I adopt alternative “medicine” now?!
I think you’ve hit the nail on the head for a lot of people!
Yep! In psychology class I think this was called “just world syndrome”. It is also a small part of the reason people blame rape victims for getting raped: What were you wearing? Why were you out at night? Etc. If they don’t do what you did, if they tell their daughters/sisters/etc not to do this and that, they will magically be protected and won’t “cause” the rape.
It’s about as logical as cooties or holding your breath while driving through a tunnel, but subconsciously people still believe it. Knock on wood!
Exactly, it’s the Just World fallacy. If they follow their specific brand of magical thinking, the Bad Thing won’t happen to them!
I got thyroid cancer. Zero history of thyroid problems in my family, but there you go. Fortunately the surgery and radiation was over quickly enough that I was all done with treatment before people had time to tell me about the benefits of coconut oil or mud baths or whatever.
POD to all of this. The internet has only made it worse. And PLEASE don’t tell anyone ” Doctors don’t want to cure cancer because they want to keep getting money for treatments.” You wouldn’t say that if you knew the oncologists who treated my spouse.
My dad’s oncologist CRIED when he told my dad the cancer was gone. We had 10 people shoved into that little office, tears were running down this doctor’s face, and there was a LOT of hugging going around.
I’m tearing up right now thinking about it. That was one of the best days of my life.
People don’t understand me when I say cancer can be a gift. You will really gain a deep appreciation for love, family, beauty around you when forced to face mortality.
Totally agree! I’m almost 5 years cancer free after stage III melanoma in 2012 and it still feels like a second chance at life. When something is threatened, you appreciate it more. The love I was shown when I was going through it was amazing and humbling. My faith grew along with my appreciation for life and the things that money can’t buy.
In response to the comments above, I also can’t stand it when people throw the blame onto the doctors, cancer researchers, etc. It really shows ignorance. I have an awesome oncologist who cares about his patients. You can’t tell me that once a person receives a medical degree, all of a sudden they are robots who only care about profits. They are people who can get cancer themselves, and so can their loved ones, so they have nothing to gain by covering up some secret cancer cure.
Well OBVIOUSLY he was crying because he wouldn’t be getting any more payments out of your family. /sarcasm
But yeah, I seriously don’t understand the people who are all “Doctors/Big Pharma/whatever medical group doesn’t want to cure [insert disease here] because they get more money out of the treatments” or something like that, because they really don’t seem to understand why most people go into medicine. It sounds like saying, “Well, your plumber doesn’t actually want to fix the leak under your sink because they get more money by keeping it drippy.” And a lot of those people are the same ones who are anti-vaccine and, among their reasons, claim that Big Pharma’s just trying to make money off of vaccines (when treating the diseases would actually be more lucrative).
As soon as I hear “Big Pharma” I tune out.
I tend to as well. I silenced one relative for a while on Facebook (essentially hid all his posts) because not only was most of it the standard “Big Pharma” anti-GMO completely-not-researched junk, but he then decided to call my husband (who holds a PhD from Yale and works in plant genetics) “uneducated” for supporting GMOs in general (or at least holding the position that they aren’t the Uber Evil everyone makes them out to be) when I brought it up in a discussion. This relative, for the record, dropped out of high school (and is gainfully self-employed now, which I think is great, but at the same time I don’t think you get to drop out of high school and then call someone with a Doctorate “uneducated” simply because they don’t subscribe to your pet conspiracy theory).
Miss B, I agree with you about the doctors. My work in a hospital has put me in contact with our team of doctors who strive to care for a treat their patients (and their families) living with cancer with a great deal of passion every day. Maybe I am missing something, but I have yet to meet a doctor who wants patients to remain sick, injured or in pain for the purpose of getting money out of them.
OP, I am sorry you have experienced this treatment from others. Your treatment is between you and your doctors and not one bit of anyone else’s business.
Miss Jagger, as a family doctor, I have to say thank you. I have had some patients who seem to think I am not doing my best to heal them as much as is possible (usually the patients who are doing the minimum on their side of the equation–like take their medicine). I have told more than one that doctors are working to put themselves out of a job. It will never happen of course, but that is the ideal.
I just ran into this last night, on another forum, someone brought up the “They have a cure for cancer, but….”
I excused myself and left the discussion.
What I wanted to say –
How can they have a cure for cancer, when it is not one but HUNDREDS of diseases? The drugs my late DH got for his non-hodgkins lymphoma would not work on breast cancer, lung cancer, or indeed some other types of NHL (there are about 30).
Why is this not “true” for all diseases? Surely it would be more profitable to keep kids in iron lungs for years rather than giving them a polio vaccine? Who slipped up there?
What about the cancers that DO get cured? Childhood cancer, especially, is much more survivable than it was 25 years ago. Who is letting those cures get through?
I just can’t even. What a horrible world view to have.
Oh WOW so many so so many hot spots here. I am a registered nurse working in oncology doing my masters in same and the amount of times I have had to bite my tongue over these points is insulting. You insult me when you imply that I somehow would prefer my patients to die then give up the cure for cancer, you insult me when you suggest I with held said cure from my father in law who died horribly just 5 days ago from cancer. As stated by OP the people involved in cancer research also have family members many get into this research because of a death of a loved one others because they have egos bigger than Texas and good luck keeping them quiet about finding a cure they could care less about the money they want the fame/prestige. Oh ‘big pharma’ are corrupt as all get out but that leads to a whole bunch of lawyers getting paid more then I’ll see in my life time to rebrand whatever magical cure they find in nature so they can market it not with holding said cure and once they cure cancer (and each different cancer will need a different cure it’s not going to be one size fits all) there is asthma, diabetes and obesity just to name a few that they can get their money from. Each trial involves millions of people researchers, admin staff, statistitions, doctors, nurses, pharmasitis, patients and their friends and family good luck keeping them quiet. Cancer is a f$&king awful disease and I do believe the profanity in this case is warranted I have had patients who have never smoked drank alcohol and on one case were truely pissed because they had been vegetarians who had never eaten processed food and they still got cancer it’s a genetic lottery it’s unfair and does not discriminate. You can reduce your risk but you can not eliminate it so stop telling people they can. And if you are going through cancer talk to your doctor the current treatment sucks but it’s better than dying and many doctors are more than willing to include natural remedies and may even be able to point you in the direction of remedies or professionals who can help with natural relief for the side effects of the treatment or the cancer itself. Many of my colleagues can give you education on visualisation or give you a massage for pain, my ward is about to undertake research on marjiuana to improve appetite, reduce nausea and there improve overall healing in our patients. Cancer is scary and it’s natural to want to find something or someone to blame the horrible thing is, there often is nothing or no one. Sorry rant over.
This should apply for anything medical. I have psoriasis and it’s extensive, uncomfortable, ugly and embarrassing. I dread the summer because it’s too hot to cover it up to hide it so I spend most of my time defecting comments from strangers & friends alike.
Had I tried apple cider vinegar? What about homeopathy? Dietary changes? Herbal remedies? Crystals?
You’re taking what? Isn’t that expensive? How dare you cost the NHS so much when *insert snake oil of choice here* would work just as well?! I don’t pay my taxes so the NHS can spend £1000s a dose on a bit of red skin!! Just put some makeup over it…
And how dare I not cover it up? No one wants to catch it, it’s disgusting! That looks like scabies, you need to get it looked at.
It’s a constant battle, and does a number on your mental health aside from anything else. The only people I want advice from are my doctors and – occasionally – family members who’ve have the same thing, as it’s genetic component means that if something works for them it has a reasonable chance of working for me, too. My best friend will pass on info if she comes across it but never with judgement or suggestions, just a copy of whatever she’s found with a ‘thought this might be of interest.’ She found my current treatment for me!
Anyone who dares to tell me to cover up gets told where to go in less than polite terms now – I’ve had enough. Suggestions for nonsense treatments get a polite ‘I’m following my consultants advice, thanks’ the first time and I get progressively less polite as the suggestions are made. I’m done with justifying my medical needs with the world and his wife. I’ve yet to ditch a friend over it, but one is coming close.
Oh my… people say those things to you? How horrible!
My brother has terrible eczema, it’s all over his face and body, he covers up as much as he can too; I have never even imagined that someone might say something so ugly to him, but now that you mention it I guess he could have faced those sorts of comments too. Thank you for opening my eyes.
Sadly yes ?… It doesn’t happen often. I do get more questions from children (whose parents normally have the sense to look mortified) and I can understand those – it’s curiosity rather than malice. The adults though…
I hope your brother hasn’t ever experienced it. There’s some ugly people out there.
Not defending anyone’s behavior, but a lot of times people don’t say anything because they simply don’t know what to say or are afraid of saying the “wrong thing”. I don’t think it’s necessarily that they are consciously abandoning the person, but they are afraid to say anything.
I know that when my sister was battling colon cancer, I was there for her but let her take the lead when discussing the disease itself. I figured she, more than anyone, would know how much she wanted to divulge. I also didn’t offer her any “you should be” advice. I was there to listen and support in whatever way she needed me to.
So true! I can’t tell you the number of times I’ve read some Facebook post of what NOT to say to someone who has “x”. And sometimes, it’s the opposite of what someone else’s post said! So I am scared to death now and try not to say anything!!! I wish people knew my compassion and empathy and how as a human I get tongue-tied and the words just come out wrong or I’m so nervous and worried I say the wrong thing.
Linda, if your sister felt anything like I did, I’m certain she was grateful for that. When I was diagnosed and in treatment, there were days when I needed to talk about it constantly and there were days when I needed to talk about something (anything, everything!) other than cancer, and I appreciated nothing more than the people who listen no matter which type of day it was.
I have a good friend who has used some specific dietary and supplementation regimens to manage her cancer. She’s under the care of a veteran naturopath. She’s also become highly educated in the science behind her particular protocol. Ignoring the larger question of what the best treatment is (and recognizing that it will vary by person, diagnosis and preference), OP seems to have hit the nail squarely on the head. People will jump in if given a forum. Perhaps social media enhances this trend. Experts, as seen in the anecdote OP related, are just as capable of offending in this way and have to be careful, mindful and sympathetic. Do I believe that either conventional or alternative medicine are the Holy Grail of cures? No! Do your treatments in accordance with your own physician’s recommendations (and if you go outside of the norm, you may be taking a significant/ unnecessary risk). That said, how one person treats their disease may not match up to your expectations. The guy whose prostate cancer cost him his life is a cautionary tale. SO is my friend’s naturopathic approach (for her context and her particular form of cancer). Victim blaming doesn’t help. It disempowers people and makes them more stressed (hence, more ill). I guess the moral is “get your check-ups”, “do ALL that you can to help yourself”, “stick with treatments that will work for your type/ stage of disease”, “don’t assume that someone else’s decision is crazy if it’s different than yours” AND don’t nag/ lecture/ bully/ casually advise/ lob random suggestions to people who are ill. If they ask, that’s different….
I’ve seen the side flashes of promoting quack cures. My cousin’s husband was being treated for a brain tumor. Her parents were supposed to watch the kids one day while she was at the hospital and then getting some sleep. Her father had his own health crisis and was hospitalized. So I sent my apologies to some friends to beg off a volunteer activity, and took care of the kids. One of the people going treated me to a ten minute rant on how MD Anderson is a death machine.
On the flip side, there is a rather famous cancer quack here in Houston. I have fielded multiple question from from friends and family about him, because someone they cared about was considering his treatment. I keep an updated file about the accusations and legal action against him, that I send them copies of. (My mom was in medical research here, so people ask me if our family knows him)
People like the ob/gyn in the administration’s article need to lose their licenses. People like the chiropractor and my cancer scammer should be charged with fraud and manslaughter. People who are treat children or vulnerable adults with this quackery or faith healing should be charged with murder by torture. I’m including the parents/guardians as well as practitioners. The freedom of speech and religion should not be used as an excuse for starving a diabetic child to death or letting a child die of what started as a simple skin infection that could have been treated with an otc first aid cream long before it turned into sepsis.
I’m so sorry you went through all of this. I too had (breast) cancer a few years back. I’m now on the cusp of five years cancer-free, and am thankful for my family and friends who stood by me and helped me get through what was unquestionably the hardest time of my life. I don’t recall people avoiding me, but I did get more than my fair share of unsolicited advice, particularly about my diet. Yeah, I don’t LIKE kale, and I’m not going to eat it just because YOU think I should! And yes, I did have chemo, and I did lose all my hair and my nails, all of which grew back, and my sense of taste did return. But going through chemo treatments was MY choice, and all of you who have told me I shouldn’t have had it because [pick a reason] can bite me. I don’t wish this on anyone and I would never (I hope) pretend to be any kind of expert offering advice of any sort. Well, wait, I have told people who have been diagnosed with breast cancer to get a back scratcher, because reaching back there with your arms after surgery is next to impossible.
The thing that bothered me the most, though, is the lack of support for my husband. He stood on the fifth ring of hell with me, took care of me, administered painkillers, emptied drains, changed dressings, accompanied me to countless doctors’ appointments, saw me through several surgeries, and basically was my rock while I was being treated. It was very difficult for him, but the hardest thing was having no one to talk to about how HE was faring. Where are the support groups for caregivers?
Depending on where you live they do exist you just have to ask which is a shame. In Australia the cancer council runs support groups for carers if your husband joined one of the online ones they may be able to give some support or may know of international ones. I’m sorry you and he went through that and much kudos to him for being there.
Thank you, Wendy! Heaven forbid the cancer returns, but if it does, I’ll be sure to look up online support groups. That never occurred to me!
My mom had a support group like that, for caregivers!! They do exist, they are probably just harder to find. We often do forget about the caregivers in these situations.
And your suggestion of a backscratcher is a good one 🙂 Practical and almost guaranteed not to offend anyone lol. I had to have radiation just on my left underarm and surrounding area (not breast cancer, but melanoma that spread to the lymph nodes under my arm) and my goodness I wish I had known how bad it was going to stiffen up my left side, my range of motion is okay but limited.
Happy (almost) 5 years, I’m 3 months away from 5 years myself! Yay!
As soon as my oncologist says the word “remission,” I’m throwing a party.
I have two painful neurological conditions (chronic migraine and trigeminal neuralgia). Fortunately, neither illness is fatal. However, they limit my life significantly.
I truly and sincerely wish people would shut up already about acupuncture. Tried it, doesn’t help, not worth my money and energy. Same for random vitamins, crystals, essential oils, and on and on – usually things the person just so happens to sell as part of a multi-level marketing scam. I seem to be startlingly immune to placebo effect. (Which is all “alternative medicine” really is – placebo effect. If it really worked, it would just be called “medicine.”)
I am, however, susceptible to the healing powers of science. So I’ll stick with science.
Not only are the exhortations tiresome, they’re demeaning. Either these people think I live in some weird bubble where no one has ever mentioned the existence of acupuncture, or they’re finding ways to blame me for my illnesses. “If you just did XYZ, you wouldn’t be sick. You must WANT to scream with pain and not be able to go outside on a breezy day or be able to hold down a full-time job. You must derive some kind of pleasure from this.” Um, no.
People who are chronically ill already struggle with isolation, guilt, anxiety, and depression. These wackadoo pitchmen just make things worse. They’re leeches on society.
(Incidentally, leeches are yet another discredited medical treatment.)
Just to be nerdy about this, leeches have made a comeback in certain surgical scenarios, because they not only suck blood very neatly and precisely but also inject a mild localised anti-clotting agent. They are actually better than any equipment yet designed for the purpose.
This. Maggots are also still used in certain medical situations because they can do certain things more efficiently than humans.
What’s been discredited about leeches is using them to “draw off the humors” or otherwise leech out “bad elements” that were thought to be the cause of ailments. Leeches for surgery? Legit. Leeches for hysteria/plague/the flu/a stubbed toe? Baloney.
I was referring to leeches to suck out humors, “bleed” patients, not for surgical applications. I should have been more specific.
First of all, OP, you have my sympathies for having to deal with such uninformed people at a time of your life when you really needed support.
Here are some points that I hear from people that I have argued time and again, that I’ll list out. The sentences within quotes are what people say:
1) “Natural way is what our ancestors followed”, and some even say that “our ancestors didn’t have cancer”. Human lifespan has increased, (despite being exposed to polluting chemicals, and other carcinogens), not in the least thanks to methods available to treat cancer. Our ancestors did get cancer. They just died from it.
2) “The researchers working on cancer drugs don’t want to find a cure, least the money dries up”. This is totally absurd because there isn’t a dearth of things to research on. And if people find a cure for certain type of cancer, they can recoup the money spend on research. There are different types of cancers, and different triggers, and each has to be studied separately. Research is not as easy as some people make it sound.
As the OP pointed out, a lot of people and their loved ones in the industry itself are going to get, and maybe even die from cancer. They have no vested interest in hiding a cure. I know a friend of mine who was doing his undergraduate studies when his mother died of cancer. That made him join a cancer research laboratory.
And anyway, most scientists are not really paid too much as compared to a lot of other professionals (and given the number of grad students who work in the field, they are paid peanuts, as a grad student’s stipend is less than minimum wage because they are “students”, but many of them still have to support a family; and they produce cutting-edge results). And if a cure is found, the top officials of the Pharma industry will make money, which is an incentive for them to actually patent and start using the cure.
3) Victim blaming! OP said that well, so I’ll keep out of it.
I have a friend of mine whose mother died of cancer recently. I offered my condolences, and behaved as I would to a grieving person. But then he keeps posting on Facebook how cancer researchers are frauds, and every single one of them should die! And the stupid science people should refrain from commenting on his post! (Paraphrased, but that’s the sense). It is really annoying, enough for me to block him!
Thank you. From a breast cancer survivor.
The moment someone gets sick or encounters some sort of issue, it doesn’t matter what it is, self-made experts come out of the woodwork. I’ve experienced the same thing when it comes to infertility, which is why I’ve stopped telling people outside of family and close friends. Everyone has a doctor they know or something that worked for a friend or a friend of a friend. Usually this unsolicited advice is something I’ve already tried or is completely useless ?(relax, go for a vacation, stop trying) given that I’ve consulted a doctor and have a diagnosis and a treatment plan. I know everyone wants to be helpful, but sometimes it’s just a good idea to say “I’m sorry you are going through this” or “I’m here for you”.
Solidarity on that one. Been trying to conceive for five years myself.
The unsolicited advice can make you absolutely crazy. No, a vacation wouldn’t help, relaxing won’t help, telling me it’s “God’s plan” won’t help (um, thanks for saying that God’s out to get me!). No, essential oils, acupuncture, sketchy herbs, changing positions, and hoping for a “miracle” won’t help. In my case, the “miracle” is science.
And the blame. OMG the blame. Why didn’t you get pregnant when you were younger? (I hadn’t met my husband yet.) Why didn’t you try IVF sooner? (Our first clinic filled us with false hope that we didn’t need IVF.) Why didn’t you why didn’t you why didn’t you….ugh.
It’s also really not helpful to tell me to “just adopt.” I think folks have this idea that you roll up to some building, pick out a kid lickety-split, and adorable hijinks ensue. Um, “Annie” was not a documentary.
Where I live, there’s a ten-page application to even be considered for adoption, the approval process takes up to a year followed by several years of waiting, the birth parents have up to 30 days to back out after the birth of the child, and fees run into tens of thousands of dollars. With international adoptions, you run the risk of shady brokers and the child not actually being an orphan (A friend of a friend adopted a child from the Congo, and found out later the father was still living). And with foster care, the goal is to reunite families of origin. So you can lose a child you have come to love as your own.
Don’t get me wrong – adoption is beautiful. But it isn’t easy, and it isn’t a quick fix. We discussed it, for a long time, and decided it wasn’t for us. We’ve been through so much already that our hearts couldn’t carry the possible grief.
As for things that are helpful to say, here are some that moved me to tears:
“I’m sorry. Life is so unfair. How can I help?”
“I hear your husband is going to be out of town. Want me to come over and give you your shot?”
“You’re my hero. I would be a constant ball of rage against God, but you keep going.”
For me, the thing that upsets me most is when people suggest you’re not close enough to a God or not faithful or whatever.
I had a cousin, who my mom raised and was like my sister, who hated doctors. She was certain God would keep her healthy. She was also an incredibly nice and generous person, no matter how little she had. She lived her faith. But she didn’t go to the doctor when she had lots of warning signs (over 10 long years) and I watched her spend the last 8 months of her life in severe pain as the cancer took her.
Even she believed in those non-doctor cures, but to her credit she went through the chemo and surgery herself, only turning to them completely when the doctors gave up and told her it was time to start hospice. People would sucker her in by saying God gave us a cure for every disease in nature, etc.
All that to say I agree with admin. Keep your nonsense to yourself. Sunlight is a known carcinogen. You passing judgement in cancer patients doesn’t help.
I’m sure I’ve said the wrong thing at times, but I try not to second-guess people’s decisions re treatment etc.
These types of comments are completely uncalled for no matter what the condition suffers from. My husband battles several mental health conditions. I’ve lost count of how many times he has been told that giving up gluten or using essential oils will cure mental illness.
This. I’ve been told I’m making myself into a “zombie” because I take psych medication. That I just have to want to get better. Or give up sugar. Or flour. Or…..I dunno, swan dive off the White House. No, I take two different kids of medication because if I don’t, I’m a danger to myself. And no, I won’t “quit taking them eventually.” These are for the rest of my life. I did my research and made my choice. The least people can do is respect that.
The way I heard it said by a friend who takes medication for depression, diabetics take insulin because their body doesn’t produce it when it should. It’s the same for mental illnesses. Your body isn’t making something that it should, so you take the medication version instead so you can function properly. You’re only “making yourself into a zombie” if the person giving that advice is already a zombie (due to their body already making whatever-it-is naturally).
That’s a really good response!
Kiara, I agree. I have anxiety and depression. I’m medicated. I’m functional. Most days I’m calm and happy and can forget that I have it. I am the only one in my family who has actively sought help for these mental illnesses, which run on both sides of my family. My close family noticed positive changes in my behavior and thought I’d found God or crystals (I do like crystals, they’re very pretty). Nope, I found antidepressants and benzodiazepines. But, these same family members think if I just go for more walks, or change religions, or whatever, my brain juice will magically reset itself. Yeah, not going to happen. My doctor is rather insistent that I stay on my meds. I’ll take her advice- she’s the expert.
My one bosses’ daughter suffers from both anxiety and depression, and her way of coping was with alcohol. She dropped out of college after having a “meltdown” and went to rehab, i’m pretty sure, court ordered due to the timing of it, because of a DUI. She finished, lived in a halfway house then went back to school and is set to graduate at the end of the summer. So she’s managed to turn things around for herself. Good for her.
Her mom, my boss, however? Is overbearing, and thinks all medicine is “stupid” and when her daughter was in HS, all she needed to do was exercise to get her endorphins going since that would help her feel better! She did admit to me she wished she had seen the signs of her daughter’s issues earlier, so they could have dealt with them then!
It was all I could do to bite my tongue and not say well, if you hadn’t been so gung ho and sure all she needed was exercise to “fix” her issues, perhaps you would have realized that she really does have medical issues and that actual medical treatment, including medication, were what she needed.
I’ve been living with this for almost 30 years. My husband suffered a terrible trauma at work many years ago, and between depression and PTSD, it’s been a nightmare. Here I go with support groups again: there seem to be plenty of resources for military veterans to tap for help (and thank God for that!), but–at least in our area–there’s nothing for former police officers. The incident in question change both our lives and not for the better, but you wouldn’t believe the things people have said to him because he sought professional help. At least one cop applied the “P” word to him. Seriously. I wouldn’t wish what happened on anyone, but sometimes you just find yourself hoping certain individuals will face something similar so they can see what you’re going through!
The same can also go for divorce. I left an abusive marriage a couple of years ago, and the friends and social groups I thought I could depend on for support suddenly disappeared, some to the point of completely cutting me out. I actually found dealing with this harder than leaving my marriage.
Then there were the helpful souls who had all kinds of advice about what I should have done to save my marriage, or opinions on how quickly I should jump back into the dating pool.
Difficult life circumstances should not be met with added stress, either in the form of false friends or unsolicited advice.
Randall Munroe, the writer of xkcd, wrote about a different aspect of this phenomenon when his wife was going through cancer treatment. Ye Olde Positive Attitude! You must remain hopeful! and cheerful!
(If you haven’t come across his strip before, there is always some extra info/a point in text that will pop up when you hover your mouse over the comic).
There is a deep, primal need to believe in magic talismans to ward off our fears or enable us to control things we cannot. It takes a great deal of maturity to rise above that and focus on our friend who is actually facing a hard diagnosis.
I am managing a couple of problematic but not life-threatening chronic conditions, one of which is extremely common. When I meet folks with new diagnoses, I’m happy to share my treatment plan if asked. People are quite disappointed to hear that it mostly consists of taking my prescriptions as directed and following standard medical advice on food, water, exercise, and sleep, plus a few readily-available vitamins and supplements recommended by my GP.
They really, really want the super-secret formula that makes everything all better. Everyone wants to believe “the truth is out there,” but nobody wants to hear that “the truth is out there and you knew it already, because it’s mostly common sense.” Magical thinking runs deep.
Dear Admin: I agree with most of what you and the rest of the posters said. However, I had to wince at this:
“No one warns you that, if you get cancer, a friend and even a family member may abandon you out of fear of their own mortality or simply a selfish need to not be in close contact with someone who triggers painful memories.”
Particularly I winced at calling it a “selfish” need. Perhaps the person is still grieving those “painful memories” and is trying to spare you that pain. Maybe the person simply doesn’t know what to say or do to support you and doesn’t want to stumble and make you inadvertantly feel worse.
“Be kinder than necessary for everyone is going through their own battle.”
Also, calling suggestions “an act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer,” is indeed harsh. The person is trying to help, giving what small gift he or she can in the face of such trouble. The person may not know what to do otherwise. As with any gift that doesn’t fit, the proper response is to smile, say “Thank you,” and dispose of it privately.
In all things, charity.
I sat at the deathbed of a friend holding her hand as she died because her son, whose wife died of cancer, wanted nothing to do with his mother’s cancer and death. I can understand grief and sadness but if years later you are so damaged that you abandon your own mother to suffer alone, you need counseling therapy.
I know about a handful of people who all believed in the delusion that alternative medicine, particularly raw vegetarian diet/no sugars, would cure their cancer. Everyone of them, from age 22-60, are all dead. None of them survived and the tragedy is that with at least half of them, conventional medicine would have treated and cured them of cancer. But someone shared their opinion of the evils of Big Pharma and the glories of weird, unproven, quacky treatments. It’s a “gift” that will kill you.
It is indeed a selfish act of violence against the unwilling recipient.
Too bad if you find that “harsh”. Deal with it. You are not the patient. Your feelings are absolutely meaningless to anyone other than yourself.
The only person the individual offering that “advice” is “trying to help” is him/her self. That individual is using another person’s illness to reassure him/her SELF that s/he will never be so helpless and vulnerable. It is simply one more form of victim blaming from an ignorant individual, and deserves all the contempt the speaker demonstrates towards the patient when offering such advice in the first place. If nobody has ever thanked you for offering unsolicted advice on any subject of which you are ignorant, it is an indication that it is unwelcome at best.
My husband had prostate cancer, and he was lucky — the men he talked to merely discussed what they, or someone they knew who had it, chose to do — surgery, radiation, or nothing, and they all seemed completely accepting of each other’s choices. Since he’s pretty much of a loner, he doesn’t have a lot of friends, and the ones he has have stuck with him. We’re so grateful.
However, oh my gosh, the comments we’ve gotten about his Type I (juvenile) diabetes! And I have to say this: many commenters were people IN the medical field. He was told he couldn’t possibly have Type I because he was diagnosed as a 30 year old adult (yes, he does), that he *can’t* feel when his sugar is dropping or too high ( oh yes, he can) that he needs to use the right order in which to prick his fingers (really?), that all diabetics need blood pressure medication to lower their bp, even though his is already low and bp medicine sends it dangerously low…. I could go on. I also need to add that he has had some fantastic medical advice from professionals who were wonderful, and thank heaven, the good well outnumbered the bad. In the general public, it’s often assumed he ate too many sweets, was or is fat (he’s always been thin), that he just needs to take some supplements or that he needs to read this or that guy’s book or blog and cure himself. I am actually into alternative health, and have investigated and read up on a lot of this; while he takes some good supplements, we aren’t giving up on insulin, sorry.
I can relate to all of this because it doesn’t just apply to cancer. I’m living with primary infertility (I’ve still yet to have a child despite trying for several years) and have a very helpful and knowledgeable reproductive endocrinologist. We are currently working on the best treatment plan for my family based on many tests and his expertise. I’ve lost count on the many “helpful” suggestions I received from people. These include “just relax and it will happen,” “stop trying and it will happen,” “try this [insert homeopathic cure such as acupuncture, essential oils, special diets, etc],” and more. All of these are often followed by a “helpful” anecdote. I’d rather just have an empathetic “that must be really hard. I’m sorry you have to go through that” than any of those suggestions.
I have had people ask me if I am not taking good care of myself, because I’m unable to conceive. Then they went into a rant about how we should be healthy. I’m not even sure how that’s related because I’m a very healthy person in general! Hubby and I usually avoid discussing with anyone except for my MIL and our doctors, and that was the first time I tried telling someone. Never again!
Some people need to believe that the cancer is the patient’s fault because they can’t face up to the reality that it could happen to them. “YOU got cancer because you chose to eat/drink/do… X. I will never get it because I NEVER do … X.” It’s a defense mechanism, sure, but a particularly ugly one.
Oh gosh, that is so obnoxious. I just read “Bright-Sided: How Positive Thinking is Undermining America,” and the author devoted a chapter to how people with breast cancer are REQUIRED to be cheerful and positive. It was infuriating to even read about.
My aunt has recently joined a religion that believes that if you say the right words, you can be healed of any physical illness…she herself is quite healthy (of course) but several of my family members have started to have serious health issues, and she will not give them a break. It’s not so fun to be told that your lack of faith is the cause of your infant son’s suffering.
All of this calls for a quote from one of the best (bad) advisers of all time: “Just because your friend manages her condition with the assistance of medication and a trusted medical professional of her choosing doesn’t mean she’s getting the best care available to her, which is to say, the care recommended to her by a person who can use Google.”
To the OP; I know about the author you’re referring to, and I hate to see those same comments as much as you do.
Just as bad, IMO, are the comments from anonymous strangers on the internet for people with “weight issues.” They claim they make these comments–you should go on a diet; if you lost weight you’d look so much better; she needs to eat a sandwich!–“because I just care about you and your health.” Um, no, you don’t. You don’t know the person, you just want to get in a sanctimonious comment or two about what you think they need to do with their lives to lose or gain weight. You don’t know them personally to know their individual situation enough to make a comment like that.
Weight rivals cancer for unsolicited advice from armchair experts. I have always been thin. I am not interested in your bitter commentary about how unhealthy/unattractive you find me. Unless you want to hear my opinions on your size and shape, keep your mouth shut. I have been listening to insults from fat people since I was a child. It’s as if my very existence is a personal insult to some them.
Redblues, opposite problem here, but why *do* people feel the need to comment?
I have a dear friend who is very petite, and has always had trouble keeping weight on. She has recently begun loosing weight for an unknown reason. The doctors have ruled out cancer, thankfully, but they still don’t know what the cause is. Instead of sympathizing with her, almost all she hears is, “I wish I had that problem!” Um, no, you don’t. You wouldn’t want to worry if this was the day you fell below 80 pounds and had to be hospitalized and given a feeding port, or if this was the day organs stopped working because you body isn’t taking in the nourishment it needs, or have to explain to your kids why you can’t carry them anymore because you’re afraid it will cause you to lose more weight, or have to explain to people that, yes, you do eat quite a bit of food actually, and a sandwich isn’t the cure-all people think it is.
Heavy people *know* they are heavy. Slender people *know* they are slender. If they want to discuss weight with you, they will, otherwise, talk about something else!
My husband is a prostate cancer survivor. He also has leukemia. My dad survived 4 different cancers before losing to cancer number 5. Neither of them did anything to cause their diseases. Cancer, like most of life’s really nasty pitfalls, is random. It can happen to anyone. The well-meaning people who bury you in advice do so out of fear. After all, if eating vegetables or drinking cider vinegar or visiting sweat baths or consuming nutmeg or dabbing on holy oil won’t prevent it, won’t cure it, if it’s really random, then they might get it, too. They might die, too. Most people can’t accept that. It’s too scary. It’s too final. All their advice is just whistling in the dark. *** The ones that have a financial stake in giving out advice are beneath contempt, and should be shunned as moral lepers, out to make a buck on the backs of desperate people reaching out for a candle to light the darkness.
I don’t understand why so many people these days are more willing to believe a random article, from an unknown, unproven source over a medical professional. So many have died and are going to die in the future from the entire anti-vaccine movement, and all this crazy cancer quackery. As the OP states, you have to do your own primary source research, or trust your physician.
Sorry for the trauma OP, glad to hear you’re doing well.
“I don’t understand why so many people these days are more willing to believe a random article, from an unknown, unproven source over a medical professional.”
Because many people have more faith in a random article, or just something they ‘heard somewhere’ – even if they can’t remember where they heard it – than in their own or their interlocutors’ actual experience.
I once suggested to my MIL that I might get us a capon for Christmas, since there weren’t going to be enough of us at table to warrant a turkey. Oh no, she said, capon is tasteless. I expressed surprise that she had ever eaten capon, which isn’t that easy to come by unless you have sources; she said no, she had never eaten it, but she knew it was tasteless because she had read or heard so somewhere, she couldn’t remember where. Well, said I, they were quite wrong, whoever they were, because I’ve cooked and eaten a capon from the butcher I’m proposing to order one from now, and it was very tasty. But it was quite clear that in her mind my actual physical experience of capon and my judgement of it was less valid and trustworthy than ‘something I’ve read or heard somewhere.’
It doesn’t help that SOME of the quacks, at least, have the title of “doctor” one way or another. Doctor of what, I don’t know. Some of them actually have (or HAD, in the case of Andrew Wakefield) medical degrees. More probably got their doctorates from diploma mills, or in something completely unrelated to medicine (or at least the field of medicine in which they’re advising others). I mean really. My husband has a doctorate. He could start posting BS online under the title of “Doctor H.” and I’m sure people would buy it, even though his “Doctor” title comes from having a PhD in molecular biology. He’s not really qualified to advise anyone in anything other than corn genetics and a few related things, but the point is he COULD start spouting nonsense and people would probably believe it. And his degree is at least tangentially related to medicine. How about a PhD in literature? Still a “doctor.”
There’s a reason my husband has a t-shirt that says “Not that kind of doctor” on it.
Ironically, the banner ad I’m seeing at the top of the site is for alternative cures to cancer.
This is a really sore subject for me. In my case, it was my Mom’s cancer that brought out the crazy from both my Dad (who was a supplement nut) and their conservative evangelical church.
My Mom finally went to a doctor after abnormal bleeding and severe weight loss and was diagnosed with uterine cancer. She had her uterus removed, but a suspicious shadow was also found on her left lung. The doctor recommended radiation treatment for the spot on her lung, but Mom refused due to her fear of radiation and chemotherapy. Instead, my Dad devised some type of diet and supplement plan for her after listening to a supposed “cancer nutrition expert” on the radio who explained that cancer is caused by “bad” fat, sugar, red meat, processed food, etc. My Mom’s cancer “treatment” also included daily prayer sessions with my Dad and during the weekly sermon at their church where the members asked God to cast Satan and his evil cancer from my Mom.
After the surgery, my Mom was symptom-free for a couple of years. However, on one of my visits to my hometown (my DH and I lived about 1400 miles away), I noticed that she had a persistent dry cough. I recommended that she have it checked out, but she blew me off. Her cough kept getting worse, so she did go to her doctor about six months later. The doctor diagnosed her with fairly advanced lung cancer (not sure which stage). At this point, my parents decided to go to the Burzynski Clinic in Houston (https://en.wikipedia.org/wiki/Burzynski_Clinic) for my Mom’s lung cancer treatment. Ironically, after the clinicians found out how large the tumor was, they made my Mom go to the MD Anderson Cancer Center for radiation treatment to try to reduce its size before they would even consider attempting their dubious “antineoplaston therapy.” So even though my Mom had refused to undergo radiation treatment when the lung cancer was a small spot or shadow, she was willing to undergo radiation treatment now that it was quite large in order to receive an unproven and controversial cancer treatment.
My parents were in Houston for about two months. My Mom died from lung cancer about one month after arriving back home. It took my Dad about a year to pay off the medical bill from the Burzynski Clinic. Fortunately and unlike many others who are treated there, it did not bankrupt him.
I don’t tell my friends things if I don’t want their advice. I just assumed that’s the way to do it. I have lots of friends, people I can count on and who have been there for me (as I’ve tried to be there for them) but I don’t confide personal things to them unless it’s a dire necessity. A lot of times they have agreed to help me with doctor’s appointments/driving, etc., without knowing what the problem is. They may ask, and I may decline to tell them, and it still works out well. In turn, I may ask what’s troubling them, and they may decline to say, and I respect that and still offer my help, even if I never know why I’m suddenly picking them up from emerg at 10pm. We don’t get in each others businesses and we are still all close, because we respect privacy and boundaries.
I have a couple of very close friends I would and do tell, as we do with each other, and we keep those confidences secret. I’m not blaming anyone for wanting to reveal the nature of their illness but I don’t understand the need to do it, or the surprise that the natural consequence is people trying to help in their own way. It’s what people do, if they care, even if they are really overstepping the line.
My mother-in-law was diagnosed with cancer. After refusing to drink green tea to cure her cancer, her daughter-in-law (not me) said that mother-in-law was ready to die since she would not listen to anyone.
Mother-in-law wanted to sit with us and have a conversation, not talk about cancer.
If I had written them all down I could have published a book with all the “advice” I’ve received. I really love the stuff from total strangers- it’s the best! (Sarcasm)
Alternative medicine is a billion dollar industry without the overhead or oversight that “big pharma” has.
The medicines produced by the pharmaceutical industry make millions of lives better every day! From drugs to regulate blood pressure to therapies for cancer. We live longer and better because of these drugs, not in spite of them. And there are statistics to prove it!
True that alternative medicine (including the herbal stuff) is not regulated here. I look to Europe where it is regulated, at least to some extent, for the pluses and minuses of different herbal treatments and when people tell me about the “studies” done here, I always ask for their reference. I never get one. When people started the “It’s natural, it can’t harm you!” stuff I always remind them that most of our best poisons are natural, and many drugs, including chemo drugs, come from nature.
It’s not regulated in such a way as to show efficacy. Would anyone take a chemo drug that did not have scientific data to back up its efficacy?
Yet, they will take other things that have shown absolutely no efficacy whatsoever.
It looks like Europe only registers alternative medicines, and doesn’t really regulate them In the sense of showing that they actually work. People are left to make their own decisions.
As a doctor who has had cancer scares and cancer myself, I get so tired of people accusing me of being in cahoots with Big Pharma. They don’t mind Big Pharma when I give out literally hundreds or thousands of dollars worth of samples. I have never gotten a penny from Big Pharma–that’s Congress you are thinking about 90-95% of whom are lawyers with no medical background. I see all these cures for cancer on Facebook and all the crap about how doctors don’t want you cured of cancer (or any other disease that is not infectious). Of course these are the same people who throw a fit when you refuse to give them antibiotics for a viral illness and I can explain until I am blue in the face that antibiotics don’t kill viruses. I have been told to my face I am a liar. And the worst are the alternative medicine people. I research alternative medicine and herbal medicine and tell patients when I think it might be helpful and when it is a crock and worse, may kill you. But if you are terminal and all I can offer is comfort care and palliative care and you want to try some quack cure, go right ahead. Who knows? If it makes you feel better while you are dying, better than what I can do for you, it is all for the good.
Two words: Empathy Cards. These say it so much better and so much more succinctly. https://emilymcdowell.com/collections/empathy-cards
I can’t say that I would ever send anyone one of those cards. Too easy to strike the wrong note at the wrong time. It’s better to just be supportive, let them know you care, and keep your unsolicited advice to yourself. Sarcasm etc. may or may not be appreciated at the time.
I’ve bought those several times. Love them!
The book that Emily McDowell co-authored with Kelsey Crowe is a great read. It addresses all the issues being discussed here. I learned a lot from it.
Unfortunately this unsolicited advice seems to follow many conditions. I’ve taken to saying “I didn’t ask,” when yet one more
person either tells me the cause/cure of my child’s Autism
This extends to so many other things as well. I have PCOS, and I’ve heard about plenty of garbage ‘cures.’ When I had trouble conceiving, I learned that my closest friends and family – the only ones I (at first) trusted with this knowledge – were all actually closer pregnancy experts! I then had a miscarriage, and of course I got to hear all about what I had done to cause it. When my son was born prematurely, yep, that was all my fault too. Trouble breastfeeding? CLEARLY I was doing it all wrong. Not one bit of it could POSSIBLY be a crappy set of hormones that I inherited by chance.
A question for cancer survivors amongst us: I have two friend – S, who has beaten cancer, and K, who is about to start chemo. S and K do not know each other. When S was in the middle of chemo, she found a massage therapist who made S a lot more comfortable and calm, and was incredibly inexpensive (this was mentioned to me in conversation ages ago). When I mentioned K being ill to S recently (just a simple ‘poor S is very ill and so miserable, not sure how I can make things better for her), she mentioned that I should recommend massage therapist to K. No pressure, just an observation. S gets nothing from referring other patients.
Do I mention it to K? I want to help my friend anyway I can, and she is so miserable, but I don’t want to be one of those people who has Loud Opinions About Treatment, or force her to feel obliged to try something she’s not interested in.
The other side is, I’m helping her partner out with transporting to drs/groceries etc, and K is distressed that she’s asking me too much. If I suggest something like this, I can add in that if there’s any therapies etc she wants to try, I’m happy to play chauffeur.
There is a vast difference in saying ‘k I understand your having a really bad time of it, I have a friend s who tried this and found it really helped here are the details of you choose to use them’ and ‘k you need to do this’ in one case you are giving k information on a friend that found it helpful in the other you are giving k a direction. So long as after the initial hey this worked here are the details you then don’t mention it again I think it’s fine. Most of the time people have issues with others who have not been through cancer giving them directions on what they should try you would not be doing this, you could even ask s if it’s ok for you to give her details to k many of my patients find it helpful to talk to others who have completed treatment or are more advanced in the treatment process. As for offering more help a simple ‘ please know I am available to help with any appointments you need’ would be fine.
It’s not a ‘cure’ for her cancer or a replacement for her other treatments – it’s something that might help her relax and improve her mental state whilst she’s undergoing that treatment. I think you’re safe to mention it as long as you support her either way ?
Just going by my own opinion, and of course, everyone has one 🙂 But I think suggesting a massage therapist is a nice thing to do. The key is suggesting, not insisting! What’s aggravating to me is when someone thinks they know better than you and/or your doctors.
“Hey, a friend of mine went through something similar and she went to this massage therapist she loved and it really helped her, if you’d be interested in that I’ll get more details for you and I’d be happy to drive you to appointments too” = Helpful, nice thoughtful
“You HAVE to go see this massage therapist my friend told me about. What, you don’t like massages? No, you just have to go, you don’t understand. The therapist is affordable and really helped my other friend. I’ll just make you an appointment and drive you there. You should just try it a few times, you’ll enjoy it once you go” = Not helpful, not nice, not thoughtful
Massage is not a quack alternative treatment. It is just something that feels good. In the middle of chemo, anything that makes your body or mind feel good is a blessing. Let your friend know. Treat her to a massage if you can. Just don’t suggest that it is a cure or a treatment, and it’s a fine suggestion. Weekly massages were great for my sanity during treatment.
I had a scenario like this recently. A good friend was diagnosed with breast cancer at age 35 and reached out for support and advice (i work in clinical research and she wanted me to dig up some peer reviewed scientific articles for her). Another friend of mine successfully beat breast cancer at the same age and was now 5 years in remission after utilizing the best medical approaches and enrolling in some experimental trials for new medical therapies. Since friend A reached out for support and advice, I asked friend B if she wouldnt mind if I passed along her information. This way they could discuss both medical decisions, and therapeutic decisions (cold caps, massages, and other supplemental treatments like breast reconstruction) if and when she wanted advice. I think hearing this information from someone who has lived through it and you can trust to not give bad advice is better.
Oh, dear Admin – I’m so sorry (again, I’ll say) that you’ve been through so much, and that people have been so persistently and – if not intentionally, perhaps judgmentally – insensitive. The stories that have accumulated here are testament to the fact that though Susan Sontag wrote her monograph on “Illness as Metaphor” 40 years ago, this awful, victim-blaming behavior hasn’t stopped, and the magical notions that character faults express themselves as illness persist. Ugh. What an awful and uncompassionate way to see the world – that people somehow magically “deserve” the illnesses they reap.
I try to be better than that, I do. Flawed though I am, I think I really can be better than that.
I’m sorry. I have to point this out because it really, really, really bothered me.
“No one warns you that, if you get cancer, a friend and even a family member may abandon you out of fear of their own mortality or simply a selfish need to not be in close contact with someone who triggers painful memories. ”
Not everyone is mentally equipped to handle seeing someone through a serious illness. They may have witnessed a horrific case of it as a child, or may have recently nursed someone through terminal cancer and are still raw. It’s not fair to judge or accuse someone of abandonment unless you know for sure that they haven’t gone through something so painful they can’t face it again even years later.
I watched a friend of mine die a horrific death from liver failure. They vomited blood everywhere as they died in my arms (I was holding them up while they threw up in the toilet) I was calling 911. I watched paramedics pronounce them dead at the scene. It’s been years, and I still have to look away and hold back tears if I see a character on TV spit up blood. I would not be able to handle being with someone who has a terminal liver disease because I will absolutely lose my mind if I see someone die throwing up blood again. I’ll take care of them if I must, but I would have to say my goodbyes and walk away if I start seeing blood and ask someone else to sit with them as they pass.
Regarding people coming out of the woodwork with quack treatments for illnesses: I tell them under no uncertain terms that I don’t want to hear it. Anyone who does it anyway gets blocked on social media, period.
That chiropractor mentioned at the end of the post should be reported to his regulatory college. I am a chiropractor and that is not right. We treat musculoskeletal conditions, not cancer. I don’t know where the OP is from but around here, a chiropractor who pulled that kind of nonsense would be disciplined, and possibly lose his license, for venturing outside his scope of practice. And yes, I hope that happens to him because that kind of behaviour tars our entire profession, when actually, we have something really great to offer as long as we stick with what we are supposed to be doing.
The Ob/gyn the OP mentions should also be reported. Kangan water? Really? I don’t know what the rules are for medical doctors but again, where I live, chiropractors are forbidden from participating in MLM schemes with patients and that includes buying, selling, becoming a distributor, anything involving MLM at all. I would assume similar rules for medical professionals.
Unfortunately it seems far too many chiropractors are more purveyors of dubious “alternative medicine” than they are treaters of musculoskeletal conditions. I’ve seen a few too many accounts online lately of people who’ve had to deal with “chiropractors” who peddled supplements or oils, advised against vaccines, given medical advice for things that have nothing to do with their discipline, and so on. It gets to the point where the people sharing these accounts label all chiropractors as quacks.
I know there are bad apples in my profession. It’s not the majority that I know. In my jurisdiction we are not allowed to give advice about vaccines (presumably because too many were giving out anti-vax opinions) and if someone asks we are to say that is something they should discuss with their family doctor. We are allowed to sell vitamins and supplements (we do have training in nutrition) but not MLM products. I’m not remotely interested in selling vitamins; last thing I need is to have a load of money tied up in inventory and the hassle of tracking it, and being a small supplier I would have to charge more than the price people would pay at the nearest store. They can go to the store. I manipulate joints that are painfully jammed and work on releasing soft tissues that are tight and scarred. That seems to be enough to make people happy and coming back, relieving them from pain and restoring ability to function, without the need for expressing a lot of weird beliefs.
That being said, I’ve had patients that seem to WANT me to have weird beliefs. They are drawn to absolutely everything alternative. Like the ones that want to bring their kids in for ear infections because they “don’t want to go to the doctor” and “don’t believe in antibiotics.”
I have an auto immune disease and severe anxiety. Diet and alternative therapies COMBINED with modern medicine have helped me immensely with both conditions. If someone I know has either of the conditions I have I will tell them what helped me. I don’t push it, or get angry if they disagree, but if something has helped me, it might help them as well.
I tend to not engage in these discussions, because it usually spirals into polarizing views very often; an either/or, agree or disagree; no in between.
I believe that there is a special hell for those who offer unsolicited health advice to friends and family, regardless of whether it’s “drink lemon juice with sodium bicarb and a touch of colloidal silver” or “you need to see this oncologist”. The key word being unsolicited. Because at the end of the day, it is about caring. Or so I (perhaps naively) believe. They care. That’s why they’re willing to push fad diets or their uncle’s proctologist’s cousin’s oncologist who is nigh Jesus with a carving knife.
As to all those special diets and things to do or avoid. I hate most of them, because most of them are little pieces of information that get blown out of proportion and raised to sainthood by the internet mob. Coconut will not cure cancer and hydrate your skin and make your hair beautiful and cure all illnesses. But it is, however, a very good source for short and medium chain fatty acids, and as such will work quite well if taken for a gut yeast infection.
And sure, popping a multivitamin will not exempt you from illnesses nor cure whatever ails you, if you’re not suffering from a deficiency in one of those nutrients that the pills delivers. However, most of us, even with healthy diets, are deficient in one way or another, if nothing else because the selenium levels in US soil is so low generally, that we do not get the selenium that we would normally get from vegetables grown in selenium-rich soil, and so we don’t have enough for vital functions.
And the problem is, spoken as a patient who fell through the cracks of my section of the European health system, that many illnesses and ailments are either not discovered by doctors or even acknowledged as problematic, even though they are clearly measurable in blood tests and treatable. It has taken over 10 years for subclinical hypothyroidism to even begin breaking into the awareness of the general medical faculty. I had to suffer through 7 years of feeling cold, constipated, poor circulation, fog brain and an absolute inability to lose the weight I was steadily gaining despite calorie restriction and plenty of exercise. The doctor measured one parametre of my metabolism, and dismissed my claims of feeling unwell. I was ridiculed when addressing my weight loss inability and it was snidely implied that I was either sleepwalking and sleepeating or perhaps just a big fat fibber. It took an alternative approach nutritional expert to piece together my many different problems and figure out my issues and then fix them. And because so much of the fixing took place through changes in diet and by adding supplements in a very specific regime, my results are still discounted by all those who, as a result of the polarization of the debate, subscribe to the “the established medical community can make no mistakes”. Despite there being blood tests painting a very real picture.
My point is, that there is a lot of wiggle room between “science is right, conventional medicine is right, all those who think otherwise should get their tin foil hats and swig some colloidal silver” and “forgo medicine and meditate, and stay away from vaccines because they contain fetuses”. And yes, the alternative approach experiences its shares of tragedies such as the cancer patient mentioned in the example. But conventional medicine drops its fair share of patients, too.
The problem with the slew of unsolicited advice is that it is _unsolicited_, not its nature or relative root in some kind of truth that could heal or not heal a cancer.
I’m in the same boat now, or coming out of it slightly. Thyroid tested ‘low normal’ but I was sleeping in a jacket and layers of clothing I was so cold. I had other signs of hypothyroidism but really couldn’t get anyone to listen. I had a TON of severe stress for about a year and I think that contributed. The fact that I’m gettig better with time points perhaps to the cause being cotison-related. My body temp is back up to normal and brains fog is better but I still can’t lose weight despite lifting weights and dietary restrictions. It has been frustrating.
‘cortisol’ …I’m sorry, sometimes I don’t type well on my phone.
Yes. This happens – my dad was diagnosed with a fairly rare and in general very lethal brain tumor. There was so much input on what he “should be doing”. Burzinsky came up. Fortunately my mom and him did not cave in into one of the so many fraudulent and dubious “treatments” that prey on desperate people.
I am glad to report my dad is in the 5% of people that have survived this type of cancer for 5+ years. He’s definitely a different man – much more aged and with memory and language issues, but still the same loving person that survived to see his grandchildren being born.
As for the “cancer business” – doctors, politicians and powerful people get cancer, too. I assure you there is no conspiracy in keeping cancer payrolls – ask Steve Jobs.
Thank you Ehell Dame. Thank you. I was diagnosed with invasive breast cancer on my 39th birthday. It was hard to blame cancer on a dedicated athlete who ate well and took care of her health. But people did.
The first thing people ask is: “Is there a family history?”. Because if there is not, I must be somehow at fault. And if I am, when will *you* be punished for those extra 30 pounds and potato chip habit? I *must* be guilty of *something* and a few pointed questions from a vegan art history major will reveal exactly what that something is. Then that person can pat him/herself on the back for being of superior virtue and continue to revel in their just reward.
Cancer is not a moral failing. Chances are, it will happen to most people who live long enough. Poverty is also not a moral failing, but that is another rant.
Illnesses can bring out the worst in people.
When I had a serious heart problem I had a friend who picked that moment to reveal a crisis (that was large part of her own making and that she chose to keep from me for several years apparently but thought this would be a great time to share with me). She literally called me at nearly midnight while I was in the hospital, so sick I was not sure if I would be alive in the morning, and utterly desperate for sleep. She wanted support, but I could barely keep my eyes open through the call and at some point I had to tell her I had to go because it was not fair to my very sick roommate to be having a conversation so late.
She was well aware of my condition and I was at rock bottom and had not an ounce of strength left to give anyone else. Then soon after when they discovered I had cancer in addition to my heart problems it felt like she became another problem to manage. I was put in the position of having to comfort her about my condition. She wanted to visit and stay with me and “help”. And while her intentions were mostly good it felt like she was making my illnesses about her. She became very pushy about it and would not let it go. I finally had to put my foot down. At first I tried to sugar coat things but she would aggressively argue every reason I gave and finally I had to say, I DO NOT want you here. I am using a commode, I can’t dress or shower myself. The only people I felt comfortable with in my condition were my husband and mother who were taking very good care of me. She was very put out by that but finally stopped pushing it.
Now in hindsight, and in much better health, I can see a very long pattern of jealous behavior, making my problems about her, minimizing my successes. I think my illness just magnified these issues that I was previously blind to.
My mother was 43 when she was diagnosed with breast cancer. She beat it and was in remission for years before finally succumbing at the age of 64 when it re-emerged. She was a brave woman who fought like hell but was also realistic when her doctor said it was time to call hospice and she was surrounded by comfort and love in the end. As far as death goes, it could have been much worse.
So, when my MIL told then-hubby and I she had been “monitoring” a lump for 10 years and drinking teas (etc…) but was now going to the doctor for treatment I was pretty alarmed. She knew about my mother of course and asked about treatment – she was more worried about feeling “off” than getting better.
MIL’s doctors recommended chemo which she took for a bit but then stopped because she “felt so good”. Of course, her cancer continued on with a vengeance and weakened her pretty quickly. She wouldn’t tell her brothers she was sick so, I did behind her back, and they got to see her a month before she died. Within that last month, she and her husband dug up some crackpot machine from the 1930s to aim at her daily because, now that it’s too late, is the time to get serious about treatment.
They also didn’t believe she was about to die and refused to call hospice. Instead, they got a nurse to keep her comfortable – the nurse told me the tumor was bursting through her skin!!!
Oh and, guess whose other son is an ER doctor? All he did was criticize the doctors treating her and then post about her “brave” fight on facebook. My kids still ask how she died and it’s all I can do to *not* tell them it was from stupidity. I know that sounds harsh and it’s not right to speak ill of the dead but, if she’d gone to the doctor at the very beginning, she’d probably still be here.
I’ve never understood the ‘do not speak ill of the dead’ mentality.
If they were a nasty goat in life, I’m not suddenly going to act like they were a saint.
I just put it under the “if you can’t say anything nice, don’t say anything at all” category.
I believe it is considered inappropriate because the deceased is not available to tell the other side of the story or defend themselves.
Ehh… if they were convicted for child abuse or killing someone, I think it’s okay to not speak nice about them.
It is never wrong to talk about your own experiences, and usually those experiences involved other people, too. You can relate your side, including how others behaved at the time, because that is all part of what happened to you. You should try to refrain from “putting words in the others person’s mouth” if they are not there to correct you. But otherwise, if we kept ourselves from ever “speaking ill of the dead”, then a lot of our own stories would be so short and disconnected that they would no longer have any meaning and wouldn’t be worth passing along. History would be lost.
People “blame the victim” for everything.
I’ve also removed myself from a dear friend’s life during her cancer. After I made multiple offers to help, she said she didn’t need me to do anything.
I was undergoing tremendous grief of the loss of several family members myself, and many of my so-called friends had abandoned me. It was a situation where my friend, ironically, blamed me a little for not following her advice.
I realized that this dear friend could not “be there” for me, and I needed someone badly, and I could not “be there” for her.
So, we stopped contacting each other. I feel badly from time to time, and do hope she’s well. However, it’s not the first time in my life that I’ve distanced myself because I thought – given the burdens I was carrying – I might be more of a liability to someone than a support.
Such a thing is not always true; in fact, it’s rarely true. Most of the time people who abandon you are being self-involved little scaredy-cats. However, make yourself feel better and imagine that a few of them are actually trying to relieve your stress by relieving you of themselves. Either way, when you get to the bottom of it, it’s true.
I completely understand the problem. People do the same thing with diabetes. When I tell people I’m a type 1 diabetic, they start babbling about how I can “cure” my diabetes by becoming a vegan, or eat lots of cinnamon, or completely stop eating carbs, or some nonsense. My grandfather was taken in by a quack who told him that if he only ate natural sugar, like fruits and honey, he didn’t need to take insulin. He died shortly thereafter of a heart attack with gangrene in his legs and arms because his circulation was so damaged. When they start in about their virtuous lives and how they have manged to “prevent” diabetes, I usually need to remind them about the numerous small children who have this kind of diabetes and how this is caused by immune system malfunction and not a blameworthy lifestyle. Sadly, these people don’t avoid me as if I am contagious. I’d really be OK with that.
I think a lot of people confuse Type I with Type II. And then, since they are such experts, they helpfully give you advice.
I was offered cookies by an acquaintance once, and then she said to another guy in the room, “I won’t offer you any since you’re diabetic so you should never have sugar.” I said, “Diabetics can have sugar. They just have to balance it with insulin, just like our bodies do.” He said, “THANK YOU!” and from the emphasis he put into it I realized that he must have to put up with constant food policing like that. Eeerggh, I can’t imagine.