Once again it’s been ages since I’ve done a blog. I don’t really know what to say about it other than I’m tired and it’s cold again and I guess I’ve just done other things with my time.
But I want to write about something in particular in this post. A phenomenon I recently found out about.
I have found out that there is a community devoted to people who practice “Munchhausen by Internet.” (spellings seem to vary depending on where you look).
I recognised the word; Will has a card game called Baron Munchausen for which you basically make up as much bollocks as you can in an interesting way. Munchausen’s Syndrome, therefore, is similar in the regard that people with it make up a lot of bollocks, specifically about illness. It is termed as a “factitious” disorder, another confusing word, as it sounds like it should be about something that’s true. It sounds like it should be the opposite of fictitious, but it isn’t.
The most common iteration of this seems to be Munchausen’s by Proxy, for which people hurt someone else, usually a child or pet, for the presumed reason of eliciting sympathy during the resulting investigation into the problems by the doctor or vet. This is perhaps the variety of Munchausen’s which is most angering, as it turns out that there are people out there that do really grim things to their helpless animals and children, because they seem to want attention for it.
And of course, the one I have recently discovered, Munchausen’s by Internet, is also infuriating. It seems to be a phenomenon of people faking disability and illness in person, so that they can make money on the internet, and gain sympathy and popularity.
This only seems to work so much in the USA, where as long as you have money or good insurance, doctors seem quite happy to let you ask for surgeries you don’t need, or to simply “doctor shop” if someone says no to you. And it’s literally amazing. There are people out there getting tubes, getting sawn-into, taking up hospital beds, and getting serious drugs, because they are pestering doctors into diagnosing symptoms that they provably do not have. Not only all of that, but they earn money from the internet for doing it. They earn a living by lying about disability and relishing in medical procedures that most of us dread.
As the article I linked earlier says:
“Only about 1 percent of hospitalized patients are fakers, according to estimates by the Cleveland Clinic, although that would translate to hundreds of thousands of cases in the United States alone,”
But you can certainly try this in the UK, and there are people who do (we’ll get to that), but the NHS is going to take less shit from these people. The NHS is not going to admit you to hospital for no reason. The NHS is not going to cut into you for no reason. The NHS is funded by the taxpayer, so they are not going to hand things to you unless you need them. There are treatments they could be a bit more liberal with, and it would benefit people who need them, but I understand why they don’t hand everything out.
But unfortunately, if people keep pushing, they will come away with a diagnosis in some form, to fob them off. When all their tests are negative, but they keep coming back, they keep saying they are in pain, and a doctor cannot prove that they are not, then the doctor will say, “OK, you have fibromyalgia then,” because it literally just means “muscle pain” and is diagnosed with the absence of any pathology.
The problem with this is – aside from not solving anybody’s problems if they really do have muscle pain with no explanation – is that the munchies as they are colloquially called, have been given their ammunition by this diagnosis. They get to tell everyone about how ill and disabled they are, they get to start vlogging and getting ad revenue, they get to use NHS resources and, perhaps best of all, they get that delicious sympathy and reverence from people in their lives.
In a worst case scenario they may choose to give up work and live on Disability Living Allowance, supported by whatever diagnosis their doctor surrendered and gave them, but I doubt that many people would go this far, because living on £300 a month fucking sucks and it’s no way to live. I’m sure benefit-fakers exist, after the things I’ve seen in the forums about MBI, I’d be mad not to believe it. People are capable of really grim shit.
But what from I’ve seen, a lot of these munchies actually prefer the revenue of working full time and daily vlogging and editing, while simultaneously claiming that we cannot possibly understand how ill and special they are.
Even in the UK, though, people can purchase private health insurance or treatment if they have the money, and so there is opportunity there to mimic the way things go in the USA.
Obviously, not everyone who has health insurance, has money, or got something like fibromyalgia as their diagnosis, is someone with Munchausen’s Syndrome. There are plenty of people out there who are really ill, and plenty of people who can’t get answers for it, because the human body is kind of garbage and a lot of it doesn’t work very well. There are certainly some design notes that I would give on it if that were a thing.
The world has really come to something when you can no longer trust that somebody is actually disabled and/ or ill because they have a diagnosis on a piece of paper. There are people who will do frankly unbelievable things to themselves to get that diagnosis, such as injecting their faeces into their veins ?, injecting egg protein up into their bladder, taking steroids and other unneeded drugs, some people will even cut themselves open to cause surgery scars. Others will just “doctor shop” until they find a doctor willing to do it for them. Some people will even cause diarrhoea for attention. It’s amazing and genuinely, utterly horrifying.
Anyway, the worst part about discovering this community, is that I realised that the things being exposed in these communities, are things I have spotted in people I know. I finally have a word for these people, and it’s Munchausen’s.
I will try not to name names, but there are people I’ve known who have managed to elicit rage from me for being so obviously full of shit about illness.
Someone I knew since junior school, who was always a pathological liar even in those days (e.g. would share information about themselves with everyone and then later get you in trouble for “spreading a rumour” about them), reconnected with me on Facebook a few years ago. As we all know by now, my main problems are caused by Ehlers-Danlos Syndrome and its related conditions such as POTS. Well, guess who magically started experiencing symptoms of EDS after reconnecting with me and seeing my posts about it? Suddenly, they were diagnosed, and were commenting about it on all the Facebook pages for the support organisations etc.
I doubted it immediately, especially as it was obvious that they were angling for a particular diagnosis from the start, they mentioned nothing about genetic testing, and neither of their parents has EDS, so where the hell did it come from? But I also tried to give the benefit of the doubt, and wondered if I was just cranky that this person’s situation was resolved so quickly whereas I was having dreadful physiotherapy as a teenager. I invited this person to our annual barbecue that year. And then this person revealed, to my face, that they did not actually have a diagnosis. They said that their doctor refused to diagnose them, but that they were going to keep trying because they thought they were going through the same thing as me. Note that I was sat there in the wheelchair required for my wriggling joints, while they were moving around normally. They did other shitty things there, but that’s another matter.
So I carried a simmering rage in me for a while about how this person has admitted lying about a diagnosis to my face. In the end, I wound up cutting contact over something actually unrelated to illness, believe it or not. Sometimes people are just awful.
I heard about this person again, from a friend who also has Ehlers-Danlos. She was a moderator in a national EDS support group on Facebook. She told me about having to remove that person from the group, because they were seen contradicting their own diagnosis story multiple times. And it was a real problem, because that group supports lots of vulnerable people; there was a woman who collapsed in a shopping centre (or something of that nature), and her only way of getting help was to post in that group and arrange for somebody to come and rescue her. Having munchies in that group, reading other people’s personal information, is obviously dangerous. So that person was removed from the group by the moderators because they contradicted themselves so much.
I don’t tend to frequent support groups much (I am a member of some but I rarely visit them, I’m more of a lurker than a poster by nature, anyway), because they are absolute munchie magnets. Unfortunately, Ehlers-Danlos itself seems to be an extremely desired diagnosis among fakers. I don’t know why, because it’s a miserable existence. But I’ve intercepted people starting to angle for a diagnosis, saying their joints hurt so they must have what I have. Usually when I talk about the genetic aspects, they back off, saying it’s not so bad anymore.
There’s someone that Will and me overheard, laughing about a blog post I wrote about mental health problems, she called me a “mad cow.” A month later, she started saying she had depression, and still bangs on about her mental health situation. We are sceptical, to say the least.
I’ve been told about an acquaintance angling for a diagnosis that you only get after everything else has tested negative, and it seems to be because they are getting a new dog and they don’t want to leave it at home. On that note:
There’s someone I know online through the Assistance Dog community, who clearly embellishes their status updates about their latest doctor appointment. They started out with one disability, but then suddenly got an EDS diagnosis, even though they told me they have never dislocated, and dislocating is one of the diagnostic criteria. They also got a POTS diagnosis quickly after that, and feel the need to keep going on about their special combination of drugs they’re on and their special heart symptoms, even though anyone else who actually has POTS will know that those heart symptoms are normal for us. They like to make a point that their own doctors think they are unique and special. This person may have started out as actually ill, but now seems to have undeniably become a munchie. Perhaps the allure of internet validation was too much to resist.
The Assistance Dog community makes me feel very conflicted. It’s very depressing to say that I have to estimate that 90% of the people in it, if not more, are Munchausen’s cases. I used to think more charitably of it, but I’ve encountered too many dodgy people, even people who have stolen pictures of my own dog, and people that have been caught out in terms of their diagnosis stories.
America is the worst for this, because they refuse all forms of regulation or required proof, because they get to be just as special as they say they are, their dog can have any number of claimed abilities and there’s nothing much that can be done about it.
In England the law is a mess and doesn’t say entirely what it means, and there is an owner-training community that definitely has some incredibly dodgy and downright dangerous people in it (that’s a story for another time). Since running an organisation to help people here owner-train, I’m sad and frustrated to say that the majority of our applications have been from people I can now describe as having Munchausen’s. So far, these people’s own doctors have not supported their claimed diagnoses.
But the day will surely come when someone has a diagnosis on paper, but is wasting our money and resources, as well as the sheer amount of energy we have to spend to visit someone and work with their dog. And why? “Attention” seems to be the most common reason.
Maybe it’s because I’m a homebody that I don’t get the appeal of attention. I like to be privately in my house. I like to have a small circle. I dislike having to deal with large groups or even to deal with people at all. I don’t like the idea that anyone is looking at or listening to me. If it were possible, I’d have a robot come to my house and deal with my medical problems so I wouldn’t have to speak to anyone.
Training an Assistance Dog is something I embarked upon because there isn’t another option for independence, because I constantly drop things and get stuck and hurt myself. The fact that people stare and ask questions is a very unwelcome side-effect.
But I guess for some people, having a dog in a shop where it isn’t supposed to be, with its gaudy vest full of patches and buttons (oh, how some owner-trainers despise the clean, simple jackets of established charities), marking out that the human beside them is the exception, is so different, is second only to them having twinkling lights above their head spelling out “I am so special!”
Working dogs are my passion in life and they’ve been really soured for me by people like this. It’s bad enough that I am often too ill to get much work done over long periods, but now I do not even enjoy the work. I do not want to deal with these people.
So to wrap this up, I guess that finding out that Munchausen’s and Munchausen’s by Internet are full-blown things, really mentally shook me and I needed to write it out.
You know what the worst thing about Ehlers-Danlos is? It’s not the usual residual joint and tissue pain caused by overextending a joint – which everyone and their uncle thinks they have – it’s not even the tissue pain from a recent sublux or dislocation.
The worst thing is constantly thinking about the fact that a dislocation will come. Someone more eloquent than me once likened it to stepping on broken glass; no matter how carefully you tread, you know that a cut is going to come, and it will hurt.
Dislocations and subluxations will come. Burst veins will come. Skin rips will come when you reach ever so slightly too far for something. And you have to feel every one of them.
Some dislocations are simple, things slot right back into place, and then you just live with some heightened pain or swelling for a while. Some dislocations don’t go straight back in, they get trapped out of place by swelling or maybe a tendon wrapping itself in the wrong place, which makes the area in question painful and virtually unusable. Sometimes people with EDS do have to go into A&E to get a dislocated joint reset, but we usually try to avoid this as we are used to caring for ourselves (plus we’d have to live at the hospital, otherwise).
Some dislocations make you feel so violently ill. I recall a specific one in a flat we lived in a few years ago, I took a couple of steps in the living room, and my kneecap slid to one side. Aside from the pain, I remember the springy nerve feeling surging up from my stomach, I curled over and almost vomited right there, it was so foul.
I wait for the next time that feeling will come. Some people see that as a desirable life.
Personally, I think a desirable life is actually getting to leave my house for work several days a week, getting to go to the newsagent whenever I want, getting to run with my dogs in the woods, starting a family whenever I feel like it without worrying that it might kill me, getting to drive a car, bringing in my own income, holidaying like Lara Croft and climbing things with my bare hands. Basically, doing whatever I want whenever I wanted it because my body wasn’t stopping me. The kind of life I thought I had more time to achieve before I needed a chair.
I’m going to give everyone a tip that they won’t want to hear: check your weight. Yes, disabled people are always being told to lose weight, and a lot of the time that’s inappropriate.
But if you think you’re suddenly getting joint or tissue pain or you’re suddenly really tired, check that: You haven’t passed the milestones of being 20 and 30, when everyone has less energy to spend, and: that you are not above normal weight for your height.
Honestly, check it. Check your BMI, then check one of those height-weight graphs. Are you obese? Not like one of those muscle-bound athletes that BMI doesn’t apply to; you know that’s not muscle. Are you carrying extra fat? If so, face it. That is probably what’s aggravating your joints and sapping your energy.
I get it, I’m fat too. But the key difference is that I was ill and in pain when I was thin. I gained weight after becoming so ill that I could barely move. It’s something that I’ve been fighting for the last seven years.
Being fat does my tissues no favours and, when I manage to lose weight, things will definitely get less painful.
Most people would find that their pain would disappear entirely if they would just face its actual causes. There is no need to go down the path of Munchausen’s when, chances are, you are not disabled.
If any good can come from my venting here aside from emptying my brain, I hope that people will reconsider how they see illness and disability. Yes, it affects my life, it affects the things I can and cannot do, and there is no point in pretending otherwise. But, illness is not my identity. There are so many other attributes about me as a human, about everyone.
Making disability so revered, is both insulting and dangerous.
Don’t disrespect me for being disabled. Don’t restrict my access to places or use cruel memes to compare your run-of-the-mill bullshit to my serious life-altering problems. But don’t put me on a pedestal for having an illness, either. Just treat me like a human.