Chronic Illness and Us:
PART IIB(2):
Helpful v. Unhelpful, cont.
As a recap, we’ve gone over some things that are unhelpful. I’d like to conclude with yet more unhelpful ways helpfully unhelpful people try to help. I hope it helps.
Dr. UnHelpy and His/Her Miracle Cures!
We all have that friend or family member, don’t we? Oh, yes, we do. They send you articles from websites like: mothernaturecuresall.com, allyouneedisloveandtumeric.com, healingstonesandmineralscure.com, satanisbigpharma.com, or my all-time favorite, hightimes.com.
Your help-y friends send you articles by “experts” named “Dr. Siri Ysvnkisanakashrilanka[1],” who cites research done at her “O Ucan Tbee Siri-Ous Naturepathogenetically Wellness Retreat” laboratory, using hazy, occluded, and obtuse generalities, (and outstanding and ingenious leaps of causality-defying logic, peppered with sketchy-at-best unsubstantiated scientific research) all the while co-opting actual, verified science and weaving it in, out of context, to conclude that wheatgrass and the morning dew from a newly sprouted eggplant cures ovarian cancer.
While I freely admit that Big Pharma is dubious at best, and for-profit-demons-from-hell at worst, I also believe there are doctors, scientists and researchers at those places and elsewhere, who genuinely want to help people. And right now? The thing that allows me to sit at my computer and write this belly-clutching article are a couple of pharmaceuticals that literally save my life by taking away unbearable pain that would have surely ended my life had I continued to endure it, daily, with no relief.
(An aside: “Western” a.k.a. pharmaceuticals prescribed by licensed physicians are neither good, nor evil. They are amoral. They either work, or they don’t. Some cause more harm than good. Some save lives, every day. Some kill. Some can be abused or over-prescribed. Etc., so on, so forth. It’s up to you and your doctor to figure out which does what, how and if and when and why.)
Back to the alternative medicine stuff. To quote one of my favorite comedians and comedy-song writers/performers, Tim Minchon: “Alternative medicine either hasn’t been proved to work, or has been proved NOT to work. Do you know what they call medicine that’s been proved to work? MEDICINE.”
And I don’t care if your third-cousin’s uncle’s brother’s poodle’s fiancée’s nephew ate all-organic, raw food while inhaling melted peanut-butter fumes, this does not prove causality in the miraculous disappearance of his brain tumor. Anecdotal stories of miracle cures mean nothing to me. But that’s because I believe in things like facts, facts that are proven by scientific method, empirical evidence, appropriate studies and research conducted by reputable scientists and medical researchers; studies that are peer-reviewed, tested, all done by reputable research facilities and medical professionals. BUT THAT’S ME.
Some sick people, desperate for hope, will believe anything you tell them. The onus is on you if you relate information that is faulty, biased or outright untrue. If you tell someone who is terrified, desperate, and clutching at any form of optimism, some anecdotal story about licking a frog and being cured, you are playing with another person’s emotions and life in the most despicable way imaginable. Do not prey on your friend’s fear and despair with your monumental distrust of the health care system, your bad experiences with doctors, or your belief that alternative medicine is good simply because it’s “natural.” There might be a conspiracy of some sort, but you don’t know it and neither do I.
Today’s health zeitgeist is that if it’s natural, it’s better, and it works. That, along with the paranoid delusions that there’s some conspiracy afoot to keep remedies and cures from people in order to keep them sick. If you think about all of the levels and deceptive intricacies that kind of conspiracy would involve, while simultaneously using your critical thinking skills, you must conclude that it is not world-wide plot. It is a rabid conspiracy theory. If you think, because I wrote that, I am part of “It”, then you’re in too deep: go back to your bunker and start carving more wooden bullets. (And because you read this, we know where you live, now.) Kidding. The point is, yeah, Big Pharma wants your money. We need healthcare reform in a huge way. But that’s not the point of this article. The point is how to help your ailing friend.
Many people subscribe to the idea that the “old remedies” were the best, truest forms of medicine. Allow me to remind you that when they were using roots and herbs to treat illnesses, they didn’t work most of the time. The ones that DID work became medicine and are still hanging around. The bark of a willow tree seemed to work, and it consistently did work, so they studied it, researched it, and now it costs $1.59 at the drugstore and it’s called “aspirin.”
Let’s also keep in mind that the life expectancy of a human being was literally half of what it is now back in “the day.” (Again, Google your heart out, I’m digressing enough as it is). Sure, hot honey and lemon tea soothes a sore throat and helps with constipation, but if you’ve got white spots on your throat, get to a doctor, don’t find a shaman in the local alternative free weekly paper from the coffee shop. A pendulum swaying across your palm is hypnotic and nice to look at, but will not tell you where your health troubles lie.
Show me HOW it works, WHY it works and valid proof via medical journals, not anecdotal health forums, and I’ll think about spending my time, energy and money on it. Otherwise, leave medical advice to M.Ds. This goes for your sick friends, too. Spare them. For some, it’s life and death. For others it’s coping, daily, with something painful or horrible. If they wanted you as a medical professional, you’d be on their health plan, not on their friends list on Facebook. Which brings me to:
Even If You DO Know What The Hell You’re Talking About, Don’t Say It Unless They Ask For It
Recently, on Facebook, one of my “friends” (we were FB friends, but had never really met or interacted much), disclosed she had a chronic illness on her page. I happen to know quite a bit about the illness of which she spoke, so I read the comments. My eye began to twitch. One of her other FB friends gave her The Answer to her illness: a Miracle Cure! out of Canada that had miraculously “cured” this woman’s ex-husband of the very same chronic illness my friend had disclosed. She told her the product’s name, then threw in a bunch of actual science that was completely unrelated to the condition’s treatment (but spoke of the genetic patterns that experts were trying to identify and isolate) and then threw in more anecdotal medical advice. And so forth. Me =eye a-twitching.
I decided to see who was giving this Miracle Cure! such a great PSA so I clicked on this woman’s profile. She is a self-proclaimed “Psychic” and former…ballerina. That’s right. A…psychic ballerina. So, the psychic ballerina went on to tell my friend about the Miracle Cure! and my friend seemed so excited and heartened by the news that indeed, her incurable condition was, in fact, curable with a bottle of supplements from Canada at the whopping-yet-reasonable-since-it’s-a-Miracle-Cure!-$99.95 a bottle. The psychic ballerina told my friend that she, herself, had gotten three doctors to “carry” the miracle cure in their offices here in the land of Zion, fraud, and MLMs! You’d think, it being so miraculous, more doctors would be on board, and more drug companies would be eager to snatch it up, wouldn’t you? Indeed.
So…being the fact slut I am, I did some research. Turns out, the “Miracle Cure!” is a bunch of vitamins and minerals and amino acids, and the two men who founded the “company” were 1) a Mormon businessman from Utah, and 2) a pig farmer. The Mormon businessman had been involved in several MLM-type business ventures, one including, I think, Tahitian Noni Juice, the Miracle Cure! from the late ‘80’s for everything from impetigo to cancer to bipolar disorder.
I also found a blog about the Miracle Cure! and the blogger’s experience with it. The blogger tried this Canadian miracle product, taking them at their word, that it indeed “cured” a host of ailments, and it did nothing, nada, for her illness. More disturbing was this: after she ordered it, her online order was followed up by a phone call from the company asking for her personal medical history, among other inappropriate things. When she tried to find out their qualifications, they hummed and hawed and eventually did the phone equivalent of throwing something in a person’s face, turn-tailing and running away: They said, “Have a nice day!” and hung up. The consumer of the Miracle Cure! reported all of this on her blog. The Canadian company is suing her for libel. Apparently, if the product does not work, you’re not supposed to tell anyone.
I got back on FB, and asked the psychic ballerina if she could provide the names of the doctors who carried the Miracle Cure! (no, I didn’t refer to it as that) and what their specialties were, their credentials, and their board certifications. I even said “please” and “thank you.”
<==This is a cricket and he and his friends were all making noises, but she, psychic ballerina, made none. As in, noise. As in, no answer.
I reached out to my FB friend via private message and told her what I knew to be fact about her illness. I gave her some solid suggestions on reading materials and the names of a few doctors in her area whom I knew to be reputable and experts in the field. I put a lot of time and energy into the message, hoping to help. She thanked me in a message back with a smiley face and an “!!” I felt glad I’d put in the time to help.
When I went back to her profile to copy and paste psychic ballerina’s comment for this article, (a great show ’n’ tell moment, I felt, w/r/t psychic ballerina’s tricky use of scientific word-salad to sound credible) and Lo! My FB “friend” had not only unfriended me, but blocked me as well. Wow! Okay. I was a little stunned — my message was respectful, thoughtful, and full of facts and good information. But I learned a valuable lesson: just because you know things, doesn’t mean people want to know them, too.
Bottom line? My friend was not interested in facts.** She wanted a piece of the pie-in-the- sky a.k.a. Miracle Cure! promised to her by psychic ballerina. Either that, or I somehow offended her, which, had I done that, it would have been nice to know so I could apologize and make it right, OR, somewhere in my comments, she read that I was batshit. I re-read my message and couldn’t find a trace of my “batshit’ anywhere. Hmm. I guess I’ll never know. Because instead of being honest, forthright and assertive and saying, “Thank you for the message, but I really am sort of up to “here” with everyone’s opinions, insights, etc. so please, just leave me the hell alone, okay? Thanks, ‘bye,” and then unfriending me, she wrote back a “thank you!!” (two exclamation points) and then, without another word, I was ‘disappeared’ from her FB life.
Good lesson for me, and now, you. Even if you know, don’t share it. Or ask: “Hey, I know a lot about this particular thing you’re dealing with. Would you like to know what I’ve learned?” If they say, “Why yes! please!” Then go ahead. If they say, “Um, no, not really,” then don’t share. Or, if you’re dealing with someone (usually women — sorry to be gender bias, but the ladies here are notoriously “nice” but not very forthright if there’s an…unpleasantness) in Utah, where if we had a “State ‘State-of-Being,’” like the State bird is a seagull, we would be the “State of Passive-Aggression,” if she says “Sure, you can share,” she might very well mean, “No, leave me alone! I hate you and I don’t know why but you scare me!” Well…*sigh*. I don’t know HOW to advise you there, Buck-O. Just proceed with caution, use your best judgment. What can I tell you? I make the mistake of taking things and people and their words at face-value, and it gets me in more trouble than you can imagine. Maybe let them approach you. Yeah, that’s best. But then ask them if they want facts or a Miracle Cure! Then you’ll know whether to waste your valuable time on helping them, or to go ahead and refer them to the psychic ballerina.
Lesson learned. Moving on.
Dr. Mary Jane, Please Report to the Snack Aisle
This requires its own little bolded subheading: YES, YES, YES, a thousand times YES! I have tried marijuana and NO, it doesn’t help! Holy Jeebus-on-a-Popsicle-stick, it’s pot, not a fucking Miracle Cure! for everything from anxiety to cancer to ass boils.
Look, there aren’t many studies, but some legit studies show marijuana helps with seizures, certain bladder conditions, and nausea for people going through chemo. There might be more. Bottom line? I do not suffer from epilepsy, I am not going through chemo, nor is my bladder going wonky, so why in THE fuck would you assume my particular condition — of which there is scant to zero research on because remember, I’m Patient A — would be helped or cured with pot use, since there is absolutely no scientific evidence proving, or even indicating, it would help my condition?
You see, that’s how medication works. If you have Pink Eye, there’s a medicated drop for that particular ailment. There are lots and lots of medications out there because, unlike your grandpa’s velour stretchy pants, one size does not fit all.
Don’t ask your friend about pot. We all know it exists. We all know the stories. They will figure out if pot/medicinal marijuana is for them or not.
I am a proponent for pot legalization, research and proper regulatory, FDA approval to help people who can really be helped by the effects and properties of medicinal marijuana. But it is not a cure-all. My condition is so complex, my doctors still can’t quite grasp what makes it what it is. They can only theorize. And as for me personally, this little rant is gonna happen:
“Trying” something new for my condition isn’t a simple matter of, “Oh, well gee, that didn’t work, okay, onward…” When I try something new and it doesn’t work? The consequences are usually me, getting laid out for days in unbelievable pain at best, or a trip to the ER, at worst. Yes, I went on an “all about me” thing, but it’s my article so piss off if you can’t take a little rant. If you look really hard, you might find information in it that you can use. If not, hey, feel free to NOT highlight it.
Back to interactions with sick friends. You are not a doctor. You have no idea what your help-y medicinal suggestions will do if a friend tries them on your recommendation. For example, I had someone tell me I just HAD to take turmeric. It has some good health properties, apparently. However, I am vigilant. I’m a fact slut, remember? So I checked and read studies. Turns out, a medication I’m on for asthma would have a very bad reaction with turmeric. That asthma pill I take daily has made it so I only use my inhaler at most, once a year, whereas before I took the pill, I used my inhaler several times a day.
So if you want to experiment with anything, pot, for example, for your ADHD or carpel-tunnel pain, be my guest. As for me, if I don’t have some hard, evidence-based facts, backed up by research, okayed by my doctors, peer reviewed studies and also, basic logic? NOT GONNA TRY IT.
Bottom line? We are scared. We are vulnerable. We are seeking hope. If you are a good friend, we will trust you. If you tell us about some Miracle Cure!, we want to believe you so badly because we are suffering. We might try it. Do you really want to be responsible when if, at best, it gets our hopes up and then fails miserably, or, at worst, lands us in the ER? No, no you do not. Be our friend. That’s what we need from you.
Now that I’ve pissed off all the alternative/holistic medicine folk, allow me this caveat, if you will, before you go all ape-shit on me.
Holistic Howevers…
There are no absolutes. Studies show that certain illnesses and chronic pain and diseases can be helped with a host of things that are non-prescription, non-western medicine et. al., and would be classified as, “supplements, lifestyle choices/changes, and nutritional common sense.”
The health benefits of these things are backed by actual, factual studies. Some examples would be: yoga, physical activity/exercise, meditation, mindfulness, reading and other cognitive-function supporting activities, CB or psycho-(not psychic)therapy, multi-vitamins, certain supplements, (check with your doc, and check a website for possible drug interactions,) stress-reduction activities and practices, healthy, balanced food/diet, and even certain aroma therapies can be helpful with certain things. Some studies have shown that lavender, for example, promotes relaxation and slows activity in the nervous system. Good to know. So go ahead and aroma-tize your room with lavender if stress exacerbates your condition, or if you’re simply stressed about it — hell, stress isn’t good for anyone, yeah? Just remember, no matter what psychic ballerina or your third-cousin’s uncle’s brother’s poodle’s fiancée’s nephew says, it does not cure diabetes.
Many of these things can be a factor in illness prevention. Many of these things are good for everyone. Many of them mitigate pain and resolve or reduce symptoms ie: exercise helps with fibromyalgia symptoms. But none of them are CURES. For example, you can be the healthiest son-of-a-gun on the planet, take immaculate care of your body, but if you have a peksy cancer gene from a great-great-great aunt and it shows up? There’s nothing you could have done, probably. However, if the gene exists and you don’t get it? Who’s to say your commitment to health DIDN’T prevent it? Not I, says…I.
In conclusion, be our friends. Be A friend. Don’t be our medical advisors, and (this, to me as much as to any of you) no matter how much you think you’re helping, you might get unfriended and blocked for any number of reasons, even if your intentions were, in all sincerity, to help, and nothing more.
People who are ill can use the Googles. We can do our own research. Let us do it. Let us bounce it off our physicians. Be the kind of medicine that soothes our hearts and minds and spirits: love, friendship, acceptance, and trust.
Be well, and peace to you —
J.A. Carter-Winward
**New information: I was not “unfriended” by the FB friend. I was merely blocked for a time. Why, I know not. She may very well have valued my information and taken it to heart. My apologies for jumping to the conclusion that she wigged and excised me because of my proffered help. No clue why I was blocked, though, and it came right after my message to her, so I will not assume or presume to know anything other than I stand by my words: I won’t offer unless asked, from here on out, and if someone does a block-move or an unfriend-move without comment, it’s still fucking ridiculous. But I’m not one to hold a grudge. I wish her way more than luck, loads of peace and goodwill. But keeping my thotzz to mehself frm now on. Safest way to go. Carry on.
Coming Soon — Chronic Illness and Us:
PART III: On Mental Illness
[1] Dr. Siri Ysvnkisanakashrilanka earned her medical degree from Siri-Ous Nature Wellness MediCanal School in Meadow Lake, OR, with her primary focus on the power of human thought on rare fungal plants in Papua New Guinea. She is a doctor of Holistic Medicin-ry, with a Master’s in Feral Cat Domestication therapy, and a Ph.D in “Gelatin Psychosis©” when made with unfiltered rain water. She is a specialist in cumulous-cloud and mood therapy, with an AA in classical poetry from Oakdale Community College (Online Degree Program). She is the author of the best-selling book in Papua New Guinea, Healing Thru Tribal Dance, Healthy Jell-O Eating and Hot-Coal-Walking. She currently practices something-similar- to-but-not-quite-because-it-would-be-illegal-to-claim-it, “medicanal” at the Siri-Ous Nature Wellness Medicanal Treatment and Wellness Retreat.
