I opened up last week about my health struggles following gallbladder surgery seven months ago. In a nutshell, the surgery — like I’ve learned for a significant proportion of patients — seems to have created more problems than it solved for me. The period since the surgery has been difficult to say the least — but I’m taking it day by day and making slow but steady progress in figuring the whole thing out including diet changes and medication.
As frustrating as it has been to have to mix up a weird mutant orange juice powder drink before every meal (if I don’t, there’s a good chance I will be throwing up bile within a few days), I was absolutely delighted to find a supportive Facebook community of people going through more or less the same set of issues — specifically a great one that focuses on bile reflux, which is what seems to be the crux of many of my difficulties after surgery.
Finding support for a health issue on Facebook might seem like a strange thing to do — but when doctors aren’t of much help (or taking their sweet time about offering it!), trading notes with other patients who are going through the same thing and trying to get better can be useful.
For one, you can compare the approach of doctors in your country with those on the other side of the world — and see if there’s some drug, or treatment, that isn’t being offer locally but which might promise relief. I was shocked, for instance, to discover that I was just about the only poster, after my gallbladder removal, that hadn’t been prescribed strong opiate painkillers (and I say this as a good thing — America’s opiod is something that no health service should be in a rush to emulate.)
Another benefit is the simple feeling of no longer shouldering the burden alone — particularly if your complaint is more obscure and you are unlikely to find others with your issue to exchange notes with in real life. I don’t know anybody that has had their gallbladder out — much less somebody with a bile issue — and meeting such people online is better than not at all. I would say that beggars cannot be choosers but that would be disrespectful to the many kind and supportive individuals that populate these groups and give selflessly of themselves to help others.
The benefits I have gleaned from being part of a couple of communities have been manifold.
For one, I’ve gleaned a ton of information from my bile group that I would otherwise never have encountered: such as the fact that there’s a newer and supposedly better (second generation) drug for binding bile called colesevelam (Welchol). And slowly, I’m learning things about the condition that will help me to minimize symptoms (apparently a bile reflux flare will often kick off acid reflux; the stomach boosts production of the latter in order to try normalize its pH — because bile is alkaline — so I have an extra imperative to do whatever I can to keep the bile reflux under control.)
Although my overall experience has been very positive, in the course of interacting in these groups, one does encounter a familiar cadre of characters about which the same could not always be said.
In the interest of trying to provide some comic relief for what can otherwise be a somewhat depressing topic (dealing with health problems), here are some of those I have come up with labels for.
Some are legitimately problematic insofar as they cause others to buy into nonsensical ideas (the conspiracy theory pushes); others are somewhat amusing, like the people convinced that everybody will benefit from what helped them. And I’d imagine that these vignettes will probably be familiar to anybody else using Facebook groups to learn more about a chronic health condition.
Without further a-do, here they are.
(*These trends have not been discerned from any one particular group but rather from a combination of them).
1. The Pseudoscience Pushers
Unfortunately, but unsurprisingly, medical Facebook groups seem to attract their fair share of people that ascribe validity to unproven treatments that run contrary to the scientific method upon which Western medicine is essentially based.
The suspects are the usual ones: gluten and vaccines are common targets and the diagnostic criteria for the former seems to be “if no other cause is found, one’s symptoms can safely be pinned on an undiagnosed wheat intolerance”. But you can find plenty of lesser known ones too.
The claims of those pushing pseudoscientific theory might at first sometimes sound plausible — but the medical community generally does a good job at debunking such theories and fighting misinformation — such as the notion that amalgam fillings can cause multiple sclerosis (MS) and neurological disorders. Having to search Google whenever a sensational claim is aired is not ideal, but sometimes it is the most prudent course of action.
“Wheat is a simple TOXIN — a POISON! Those Celiac tests the doctors give only catch less than 1% of cases. I’m telling you now — you’re suffering from wheat headaches”
2. The Doctor (And Big Pharma) Haters
I wrote, last week, about how the journey to try find help for many bile reflux sufferers can be a surprisingly long and frustrating one.
Gastroenterologists can be dismissive at first. Some will even mistakenly tell you that all bile reflux is normal (if you’d like to know why, read my blog below; the rise in laparoscopic surgery probably has a lot to do with that). It can be frustrating. And I won’t lie: I’ve probably never been as disappointed by the medical community as I am right now (although truth be told, I never really had strong feelings before this).
My Gallbladder Surgery Story. And: The Water Party Project
A little more than seven months ago I underwent one of the most common surgical procedures in the world: a laparoscopic…
However strong my feelings are, though, they utterly pale in comparison to the dislike which many frequent posters in medical Facebook groups have against doctors, Western medicine, and the pharmaceutical industry as a whole.
These individuals will waste no time in asserting that doctors “know nothing” about nutrition (a very common claim — and one that is completely incorrect); might claim that medicine is suppressing cures for financial reasons; and are probably fond of stating that a certain issue is not on the curriculum of most medical schools and therefore most doctors know nothing about the issue.
The amazing part to observe is the extent to which these individuals are convinced of the fact that whatever information they have gleaned from reading medical abstracts and self-directed research is necessarily superior to the information doctors spent years learning in medical school and during residences (the curriculum of which is often derided).
These posters are also often very fervent critics of big pharma and tend to portray Western medicine as one giant racket designed to enrich those working in it at the expense of patients.
“Zinc carnosine totally cures this. But don’t expect to hear that from your family doc. Those guys know nothing about nutrition — they don’t even teach this stuff in med school any more! And anyway, there’s no money in an amino acid for the big pharma guys to patent!”
3. The Snake Oil Salesmen
This one is actually something of a misnomer because the people in medical groups who frequently recommend treatments that have helped them often have good intentions. However, you know what they say about those.
The enthusiasm of these individuals becomes problematic when they fall victim to the logical trap of assuming that everybody in the group presenting with a similar problem to them must automatically need to take the same remedy that has helped them.
This is a dynamic that I have observed in many of the handful of medical Facebook groups that I have been part of.
A poster will find that an Omega 3 supplement alleviated their asthma, for instance, and then appear to decide that it is now their life’s mission to convince every asthmatic — particularly those that wander into the group — that taking the same supplement will be the definitive cure to their asthma too. What worked for them must work for everybody else — or so their logic goes.
Although you could argue that the fact that these individuals often choose to become sellers of the supplement they advocate for is simply a manifestation of the strength of their faith in the cure, after that discovery becomes apparent it can be difficult to see their relentless promotion as anything other than predatory salesmanship in bad taste targeting those struggling with health conditions — who, despite their vehement protestations, may or may not actually be helped by the supplement or treatment they so relentlessly advocate taking.
“Supplement X will cure your symptoms — it made me into a new woman! Unfortunately I couldn’t find any that were good enough when I needed help so the only brand I recommend is the one that I happen to sell.”
4. The Ones That Ask A Lot Of Questions
OK, enough bashing other posters.
This one is squarely on my shoulders.
If the snake oils salesmen have decided that their supplement is the only way to be rid of this ailment then the repeat question-asker seems to have decided that only an unrelenting barrage of questions will get to the truth — and the all-important cure.
This individual, a fervent believer in the power of crowdsourcing, is generally well-received for an introductory/warming period — until, that is, the point at which he/she begins to monopolize the news feed and turns the group into a sort of external stream of consciousness which every member receiving notifications is then subjected to.
The incessant question-asker only typically realizes how badly his or her question asking habit has gotten out of control when, upon searching the group to see if a question has been previously asked, he or she discovers almost exclusively threads that he or she has initiated.
“Don’t mean to hog the feed here but just another question to follow up from the last one to follow up from my thread about the amino acid supplement.”
5. The Heroes
As exasperating as it can be to see the medical professional ridiculed by people spreading misinformation, to see people making baseless assumptions about what they think will help others, and to see straight up falsehoods receive Facebook air-time, in general, I would still say that my experience with Facebook groups for medical conditions has been net positive.
For the most part, discussions stay civil and people keep on target by sharing what’s working for them (and what’s not), offering support to those that need it, and sharing whatever useful information they may have at their disposal.
It’s these posters that remind the rest of the group of why it was formed in the first place and help create communities in which patients can truly do good things for one another — when otherwise they might feel as if they have reached a hopeless diagnostic dead-end or given up trying for ways to get healthier.
If you’re struggling with a health condition and feel like you might benefit from connecting with others that share your ailment, I encourage you to see if you can find a support community online — in all likelihood (unless it’s it’s something really obscure) there are already one or many active on Facebook.
Just don’t be surprised if somebody tries to convince you to give up gluten, or pins your problems on vaccines, in the process.