What’s living with munchousen syndrome like? Is it similar to BIID? /gen
Is there anything people with munchousen’s would like me to know? How can I help those who have it?
I really want to learn more about it.
This is a very nice ask. Thank you, sir!
Living with Munchausen for me is like... It's hard to describe in words in a way that I'm happy with. There's just this constant dissonance between the depth of my emotions and damage that, in my own mind, doesn't really align with my real life experiences.
And I know a big part of that is internalized neglect from trauma. The trauma must have been bad enough because I wouldn't feel this way if it wasn't, but the dissonance is still there and I think most of that comes from, for me, the fact that it's like... no matter how I explain it or what I try to manifest it in a way people can understand, it feels like they never do?
Or maybe that's a bad way of putting it. I guess it's not so much that they don't understand it so much as they don't have to live with it like I do. Their experience is fundamentally different from mine. They have their own problems, but that doesn't just make my own problems disappear, but I've been raised to think it does. My problems don't matter unless they're bad enough, pervasive enough, that they cannot be ignored by anyone else. Otherwise they effectively cease to exist the moment the topic changes. Out of sight, out of mind.
So I start wishing for worse things to happen. I try to make myself sick. I search, endlessly, for that magical thing that will make it unquestionably "bad enough" to matter. For me to matter.
It's a harrowing experience, feeling like you fundamentally don't matter unless you're incomprehensibly damaged.
I personally have absolutely zero experience with the BIID experience. I don't have it and I don't know anyone with it necessarily, so I can't really speak on the similarities myself. However, I've heard around from others that it is a similar experience, or at least similarly stigmatized.
As for things I'd like people to know? I guess, at this stage, just that we exist. There's so many misconceptions about what Munchausen Syndrome is. It's hard to really... go down the list or anything.
It's not about being "transabled" or what have you, not to me. It's about being taken seriously because we've never been taken seriously before. It's about being acknowledged because we've never been acknowledged before. It's about being loved and cared for because we've never been loved or cared for before.
People seem to think we're maliciously trying to encroach on disabled spaces explicitly to do harm to them when... that has genuinely never been the case.
Moreover, a lot of people focus so much on the deceit and faking aspects in service of "fakeclaiming" culture, without really realizing that more often than not, there's an inducing aspect that gets swept completely under the rug.
I don't just pretend I'm sick. When things get bad enough I will make myself sick, either by extreme self-neglect, deliberate consumption of unsafe food, or other unsafe and dangerous practices. I've heard of others who will straight up consume lethal substances. It's not pretty.
And then in the realm of helping people with it... In a specific sense, I'm sorry to say that the misunderstanding and stigma is so pervasive even in the psychiatric field that I genuinely don't really have an answer for you. I'm still barely scraping by figuring out how to cope for myself.
In a general sense, I guess... the starting point is to at least acknowledge we exist, and go a step further and make an understanding and welcoming space that doesn't shame our experiences or immediately relegate ourselves to scrutiny over every single issue we have as "potentially faking."
That's honestly what this whole blog is for. I initially made it just for myself to vent my own frustrations without outing myself or my system and subject them to everyone questioning whether or not we're real when the system stuff is the LAST thing I would have considered in respect to my Munchausen. Now it's blossomed into this whole safe space where people can feel free to talk about their own experiences and that's been amazing to see. At first I was kind of surprised that there was any market for this, but now I'm starting to realize that no, it's not that nobody was there, it's just that there was no space like this for us before. And that's sad to think about, but at least there is one now.
Something else I hear a lot about "illness faking" in the "service" of those with Munchausen is this broken record that they don't matter and to just ignore them. Which... I get the sentiment they're going for, what they're really trying to say is that we're not inherently harmful or doing any harm to people just by existing and to leave it alone, but the way they go about it kind of rubs me the wrong way. It's the sort of sentiment people say and then never go further about. It's almost performative.
It feels less like they want to make space to allow us to coexist and more like they want to sequester us away as a weird subdivision that nobody talks about because it doesn't matter, and I will reiterate that a big part of Munchausen is root in feeling like we don't matter. Relegating us to an isolated closet that no one talks to or thinks about is still harmful to us. It defeats the purpose of the relief we're seeking.
I'm not necessarily saying that you should blindly play along, nor am I saying that "fakeclaiming" is a good thing. Personally I'm more of a Schrodinger's Truth kind of guy, preferring to approach anyone with the mindset that literally anything they say is simultaneously true and untrue until context is achieved. Going out of your way to scrutinize people's behavior to catch them in a lie is inherently harmful witch hunting behavior. Even in the sense of privately coming to the conclusion that someone might be faking, I think, is inherently exclusionary and gatekeepy even if you don't take any action on that conclusion.
However, I think it might be better and more helpful that rather than turn this into a debate about faking and focusing on the potential for deceit, it would do people with Munchausen Syndrome a world of good if people instead focused on the reasoning everyone has behind certain things.
People have a tendency to hate liars, and get up in arms about illness faking because they feel slighted for being deceived. Lies are misconstrued as being inherently malicious in nature, but that isn't true. Lies are inherently morally neutral. Rather than focus on the truth or the lie, the intention is more important than anything, I think. Instead of picking apart a person's actions to deduce the validity, approach them with good faith and examine their woes and provide the compassion that will ease those woes.
That goes for everyone, too, not just people with Munchausen Syndrome, because you have no way of knowing for sure which is which until you take the time to unpack someone's intentions.
You never know just by looking who's trying to tell a kind lie.
