We have a problem. We all do. We think that everyone cares what we think. I’m not immune to this. Look at me: telling you what I think about others telling you what they think. With social media, and the ease at which we can start websites, natch (do people still say that?), we can spout off, nonstop, whenever we have an opinion, about anything. And, that’s the problem. So, might I suggest two revisions to when we spout off? Let’s only have opinions about things we at least know something about, and things we can give an honest opinion about.
Let’s Stop Talking Out of Our Asses
When something takes the social media world by viral storm, it’s impossible not to form an opinion, even if you know very little about it, haven’t seen the video, or aren’t up on the lingo. For example, I’m pretty sure that I won’t buy the next Drake album, even though I’ve never heard his music; and, I don’t care who Beyoncé is talking about on Lemonade. But, I have heard of these things, because I’m alive, and exist in a society in which it’s impossible not to (how Bryon never knows what I’m talking about, I’ll never know; that man lives in a bubble). Still, I formed a totally uninformed opinion. So, I don’t spout off about it, to others. They may, in fact, be very talented artists; I don’t know. I’ve not listened. Thus, my opinion stays to myself because I know enough to know that I know nothing.
For example, the newest craze, if you don’t live under a rock, is playing Pokémon Go. Alternately, the newest craze, is to share memes about how disinterested you are in Pokémon Go, or how stupid you think it is.
Well, how might you know how stupid it is? I’m not here to defend it, or tell you how amazing it is; it’s just a game. But, we were curious, downloaded it, and it got my son, who thanks to the severe social anxiety part of autism, normally refuses to leave the house, begging to not only leave the house, and begging to leave the neighborhood. He’s even looking up at people, engaging in social norms, like smiling, and greeting. It’s been amazing. I’ve read, literally, countless statements from lots of people about how we don’t need another reason not to look up from our phones, or not to disengage from the real world (ironically posted on their phones). This only tells me that opinions were formed with little knowledge of how the game works, before spouting off. This is exactly what I’m trying to say we should try to stop doing, since this particular game is designed to do the opposite.
I think we should vow to shut the fuck up until we at least scour the anals (hee hee), I mean annals of the Internet, and read at least a few bits of information on what we are forming an opinion on. Vow to find at least a few sources. Try to avoid sources with the word “conservative,” or “rightwing,” in the URL, just to be safe. And, if you find crazy stuff, vow to read more, instead of less, before you go flying off the handle to form your opinion. Too little information is killing us…..
Because Dishonesty Gets in the Way
**I’m always going to have lots more to say about the sickness part(obviously!)
In chronic illness groups, when there is too little information, there is a huge hole that gets filled in by exaggeration and dishonesty. The rest of the world isn’t immune, obviously. If you stay(ed) misinformed about what Pokémon Go is all about, and only paid attention to sensationalized headlines, you’d think that horrendous things were happening. For example, a young girl found a dead body last weekend ; someone used to to orchestrate a robbery ; and children, looking for a Pokémon, found a loaded gun, instead. If you didn’t know anything else, it’d pretty easy to form a negative opinion based solely on those sensationalized headlines, yes? The same thing happens in chronic illness groups when innocent questions get asked, for example, specifically about medications that are, sometimes risky, and people share their experiences.
Medication is, by definition, individualized. No two people have the same experience. It’d be great if they did, wouldn’t it? We could all get the same pill, and all feel better. We could call it the Placebo. I would think everyone knows this simple concept; yet, in Chiari groups, as you will soon see, it’s a different story. For example, with migraine headaches, which many Chiarians have, in addition to Chiari, Topamax is a very common first line treatment, and has been for years. Still, it’s very controversial in Chiari groups.
Lots of Chiarians find being treated as a migraine patient insulting. I can have Chiari and a bunion, right? Ewww. Why can’t I have Chiari, and migraines? Sure, having migraines stood in the way of getting a proper diagnosis for years, but it doesn’t mean I don’t have them. Many Chiarians get in their own way, when it comes to their own treatment, with this attitude.
How dare you say I have a migraine? I have this headache, right here, only on one side, and it’s sensitive to light and sound, why won’t you help meeeeee! Stupid, useless white coats!
I’ve taken Topamax for years, and have had zero problems with it. That doesn’t mean everyone can, of course. And, there are many, in the groups, because of their bad experience, that think it’s the worst medication in the world. Voices that attempt to disagree, and remind these people that side effects are different for everyone, are drowned out with the idea that the medication is so terrible that it should, literally, be banned. Opinion and fact are blurred.
They call it “Topa-shit.” So, every time a new patient is prescribed this medication, they wander into the online groups, ask if they should take what their doctor has prescribed, or ask what side effects they should expect, and they are met with these responses, every time:
- It gave me kidney stones, immediately
- It made me drive off a bridge
- It made my doctor think I had cancer, because my white blood cell count was so elevated
- I almost died
- I had a stroke
- It gave me seizures
- I failed a third grade math test on it, after only being on it a week
- Your doctor is only prescribing it because he’s getting a kickback from big pharma
- It will kill you
First of all – I should tell you that these things are all said by the SAME person. So, let’s talk about this for a moment. Why was a grown adult taking a third grade math test? Is it possible to get kidney stones, immediately? From anything? A bridge? Really? A stroke, and a bridge? Holy crap, I’m impressed. That’s some seriously impressive bullshitting. It’s sad really, how much attention this person must really, really need.
When you lurk around the groups a while, you notice things…like this same person supposedly had a stroke from Cymbalta as well. I’m not calling anyone out, just pointing out that fear-mongering, and dishonesty is pretty common in groups, at least in Chiari ones. And dropping the “C” word is pretty ballsy. Note that she didn’t have cancer, just that her WBC was elevated, randomly. That’s some scary shit, and usually works at recruiting another one in the anti-Topamax army.
And hey, check this out: this tells you exactly how much money your doctor gets from outside sources, including pharmaceutical reps, and for what purpose it’s used. You’d be surprised how little it is, in most cases. The idea that doctors are in the pocket of big pharma goes out the window when you realize that they buy their office lunch, once in a while. Big, fucking deal. If I worked in a doctor’s office, I’d be pretty pleased to have someone bring in Chinese food for us once in a while; and in a bigger office, can you imagine how expensive it would be to buy for everyone?
Doctors don’t make as much as we think they do anymore. The boost in morale and camaraderie to bring in lunch, is worth listening to a pitch and reading a brochure, frankly. And, when I see that my doctor got less than $100 last year, and it was all “lunch,” I’m pretty pleased that he bought his office lunch. Good on you, doc.
Don’t get me wrong, I don’t care one way or another who takes what drug, but I do care that people ignore their doctors, or listen more to someone who is clearly lying, than to a trained medical professional. I care because this person's agenda is purely selfish; it's purely for their own ego. That's not cool. This kind of bullshitting fills the gap for lack of knowledge, especially for the person asking the question, where a little bit of research might have done the trick. So, I suggest that, the person doing the bullshitting, stop immediately. I suggest we all stop doing it, immediately.
We’re all guilty of a little white lie, a little fib, here and there, to exaggerate, to stretch the truth, to flub an opinion, or to stretch a fact, when we don’t really know something. This person tried a drug (Maybe? Who really knows) for less than a week, and claims to be an expert, every time someone asks. This is dangerous to someone who might really need it, or who could really benefit from it.
This always makes me wonder: what do I exaggerate and flub on? What do you? What does it hurt? Who does it not benefit? These types of exaggerations only benefit us, because for a brief moment in time, we get a bit of attention.
When I was little, my mother lied all the time. All. The. Time. We called her lies, “fiblettes,” because they were, in a way, harmless. Honestly, they weren’t harmless. They embarrassed the shit out of us, but they were generally small lies; until the time she told people I’d had miscarriage and she needed to fly to California to help me cope. But, I digress. Generally, she’d tell people things like, I was failing out of school, or that my dad was in a motorcycle gang. She’d make up random things to tell people, so she could scrape up some attention for herself; much like this sad individual above. In the first case, she was helping me pass my classes by staying up all night, helping me study (I was a straight A student); in the second case, she was becoming a “cool” lady, with edge. But, for us, we couldn’t talk to anyone, because it was a conversational minefield, trying to avoid exposing her lies and embarrassing her; and forget about our own reputations!
So, what we need to do, as a whole is promise that we stop the above: no more dropping our opinions when we know we are doing it with no knowledge to back it up, and when know we are doing it dishonestly, either for attention, or just because we are, flatly, exaggerating. It may be that we don’t know why are exaggerating anymore; we may have lost sight of it. But, it doesn’t hurt to self-examine, once in a while to make sure we aren’t just talking out of our asses, right?
P.S. This just has to be shared, for so many reasons. Why? Oh why is this happening? It’s like he’s a child, in the front row here, who needs the hand-squeeze, of “knock it off,” right? He got the “look” from Michelle Obama, but that didn’t work. I can only imagine the field day the media would’ve had with the Obamas, had they so much as sneezed, at this point of the service, but Bush is, literally dancing, and not a peep. My, oh my! But, still, it makes for a nice watching experience. In the words of The Daily Show: Your moment of Zen.