I started this post a few weeks ago, just as Trump was trying to say that there were ‘good people on both sides’ i the protests in Charlottesville. Since then, the ugly truth about people abusing their power-especially men with young women (or girls). I am still stunned by Trump supporting a senate candidate who has been accused of multiple, multiple inappropriate relationships with teenage girls in order to help pass tax law. How does someone like that sleep at night? Maybe that’s why he’s an insomniac (nah, he doesn’t have a conscience, it must be something else).
I feel like I’m standing in the middle of gym floor in highschool, not knowing which group to join. Who do I want to stand next to?
I’m always happy to stand shoulder to shoulder with my dearest family and friends. I’m proud to stand next to many patients dealing with MCAS, and doctors who are trying to help patients (the vast majority of them, in other words). Online, moderate, considered, balanced perspectives aren’t very interesting though. The more outrageous you are, the more attention you get.
As I was composing this, a fellow ‘Mastie’ blogger (whom I now count as a friend) posted about relying on what people say online, without verifying and cross-referencing first. Her post is here. She talked about how to wade through information, and how vital it is to evaluate what is written. I mentioned that i’d found two sites that illustrated that exact thing. In doing so, I caught the attention of a creationist. It was quite surreal; I still think of people with that type of zeal as characters in a TV show (250 Kids and counting…). I forget that there are real people who actually believe this stuff- and not an allegorical or symbolic belief, but a full on ‘There’s a dude upstairs who created and controls the universe’ beleif. It seems that people really are willing to reject science and logic in favour of a book written two thousand years ago. It’s so far out of my frame of reference, I can’t imagine where I’d even begin.
So, on one side of the gym there is a large pool of people who know that going to see their doctor is a waste of time, and look to alternative groups eveything from Naturopathic physicians to faith healing. Some of those are pretty interesting places to visit. An infamous one with respect to ‘factitious Disorder (such as Munchausen’s) is medicalkidnap.com. The guy who runs it seems to be an ‘activist’, it’s a little hard to tell who he actually is, he may well be using a pseudonym. I used to think that these guys were complete nutters, but some stories he is telling are, as far as I can tell, based in fact. It’s impossible to tell what is fact from fiction though, so the stories he is trying to highlight get pushed even further to the side because this guy is a nutter.
On the other side of the gym stand doctors and experts like the one who runs www.munchausen’s.com. His claim to fame is that he coined the term ‘Munchausen’s by Internet’. (I’m not touching that one with a ten foot pole. …nope nope nope...). The top half of the home page is links about Factitious Disorder (FD), the bottom half is dedicated to stories about Baron Van Munchausen. (The inspiration for Guliver’s travels, some say). This is where the ‘rabbit hole’ sucks me in… It looks like his site is a ‘placeholder’- you secure the domain name, put a few things there to keep it active, with the intent of doing something with it down the line. As far as I can determine, he’s a legit psychiatrist. Anything that wasn’t studied in a university is dismissed. But for all the world, he doesn’t seem real. He’s about my age- he should be in more places on the internet than he is… no Facebook, LinkedIn, strange picture from a random alumni event, etc.. It’s very odd for an academic to not have anything except a few obvious, repeated links.
I wrote an email, wondering if he was ‘real’. It does appear to be so. It was a fascinating exchange. The details aren’t important, but he did say that he had never heard of MCAS. He looked it up, and came back to me, and said that he wasn’t aware of any cases of FD that were later determined to be MCAS. I don’t think I can even begin pointing out contemplate delineating all of the flaws in that statement!! Some scientists are almost zealous about science, believing that everything can be explained, that everything can be reduced to statistics. Arguing against FD is an impossible task. The thinking is that the patient is either fabricating illness or eliciting their symptoms, usually to get attention. There are a number of symptoms that you can ‘fake’- pain, headaches, cramps, etc. There are a number of them that you can make happen- a blood sugar crash by taking insulin, for example. Contradicting a physician is seen as a symptom of FD… So the more I argue, the more I prove their point… Bringing a journal article or old medical records also confirms the diagnosis, as we are labelled as ‘hypermedicalized’. If your symptoms are questioned, then arguing with the psychiatrist shows that you aren’t willing to get better, so that also confirms the diagnosis. If you downplay your symptoms, you’re ‘elusive’, if you’re assertive, then you are accused of being ‘dramatic’. Symptoms that are deemed ‘impossible’ are either ignored or actively dismissed, and then not written down. Then, the patient (or parent, in proxy cases) is told that there’s no mention of it in their chart, so they must be making up a new symptom. I could go on and on, but you get it. The logic is circular, with no way out. The moment a doctor even mentions Munchausen’s, it takes over. Too often, it’s easier to say “It’s your fault.” ’ than “I don’t know.”. Once it’s in there, it’s amazing how many times obviously incorrect information can be perpetuated.. (No, I did not go to the ER 12 times in three days you idiots. THINK before you put that into a report). Pointing that out of course, means that you’re contradicting the doctor, a sure sign of FD🙄. I do believe that FD exists, but I also believe that it is extremely rare to intentionally harm your child or yourself simply to seek attention.
Who do I stand with on this issue? One of them says that patients ‘need’ their doctors so much that we will kill ourselves or our children to get more attention (It’s almost a touch insulting. If I was going to make shit up, I’d do a much better job of it.) We learn very early to manipulate information to get what we need, but that can make things look a touch odd. And frankly, being called a liar and accused of wanting to be sick, is heart wrenching. If you call me a liar, I’m going to argue. If you tell me that I’m wrong, I’m going to do my homework, and bring in a journal article. I will keep trying to get better, and to achieve that, I have to stick with the ‘friendlies’.
On the other hand we have a guy who is saying some shocking (but possibly quite factual) things (I think that the Monsanto/Bayer GMO/Round-up thang is a huge issue, they’re looking more and more like the tobacco companies of the 80’s.). So called ‘medical kidnapping’ does happen. But it’s a pretty big mental leap from there to claiming that the CIA, FDA, and Big Pharma are kidnapping children to subject them to experimental medications. The only evidence provided is from another one of his websites (you quoted yourself…? Seriously? ). This fellow also says that he believes intelligent design, and therefore rejects the entire notion of genetic causes of disease. The underlying assertion being that God made us perfect, so there can’t be errors in our genes. He asserts that all illness is caused by outside forces (toxins, radiation, etc). He is 100% sure of everything he says, with a rumour posted in social media being given the same weight as a well done research study. He doesn’t make any distinction between belief, guesswork, supposition and facts. I don’t think I could discuss very much with him before my head exploded, we aren’t speaking the same language. This whole fundamentalist Christian thing about intelligent design meaning that they reject genetics is new to me. And extreme right wing Christians becoming environmentalists? That just makes my brain hurt.
I don’t want to stand next to either of those guys-even if we agree on some things, I can’t abide some of their claims. I feel way too conspicuous standing in the middle of the floor. Instead of choosing a side to stand on, let’s get outta here. THE MUSic is too loud anyhow. Leave those guys to get each other all worked up, do their ‘Westside Story’ thing… we are not going to change their minds, no matter what we say. Let’s relegate them to the fringes, where they belong, and go do something life affirming. Double double at Timmy’s, anyone?