Lasting #concussion symptoms? #PCS? Welcome to Castle Munchausen

Munchausen syndrome is a psychiatric factitious disorder wherein those affected feign disease, illness, or psychological trauma to draw attention, sympathy, or reassurance to themselves. It is also known as hospital addiction syndrome, thick chart syndrome, or hospital hopper syndrome.

Wilkommen!
Wilkommen!

Lately, I’ve been giving a lot of thought to how hard it’s been to find decent help for my long-standing TBI issues. I’ve had more “than the average bear”, and for the past 10 years, it’s been making my life pretty miserable.

I’ve been forced to think about it, because my neuropsych is retiring, leaving a massive gap of knowledge about what it means to have TBI issues, and how to best address them.

Also, when my company is acquired, later this year, our insurance may change — to the hellish coverage I had, when I was first trying desperately to find help, back in 2007.

I had to jump through all kinds of hoops, just to step into a neuropsych’s office, and even the testing they did wasn’t completely covered by my insurance, which is just the sh*ttiest thing on earth. If I have to go back to the old insurance, I will leave the job. I hope they lay me off, anyway. I need a change, and having a little $$$ help to tide me over while I interview for my next position would be great.

My safety net (which was the equivalent of 5 years’ pay) evaporated after my TBI in 2004. Thanks for that, life.

Anyway, I keep thinking back to the days when I was so close to the edge of ruin, about to lose everything– my home, my marriage, my whole identity — and how everywhere I turned, people treated me like there was nothing wrong with me. I just wanted attention, according to them. In their eyes, I was jealous of my spouse, who had spent a week in the hospital and had medical eyes constantly trained on them for months and months after their hospitalization.

Just to be clear, I never, ever want that kind of attention. Didn’t then. Don’t now.

But that wasn’t how others saw it. Those others included my (former) friends, doctors, specialists, etc. And they kept asking me A) how my relationship with my parents was, and B) how long it had been since I last took any drugs.

Oh. My. God. It was hell. All I wanted was access to someone who could explain to me what was going on.

That’s all I needed. An explanation. A breakdown of what was screwed up in my head, and some possible next steps to move on and get my life back together.

Not drugs.

Not attention.

Not sympathy.

Oh, hell no. I’m happiest when people leave me the heck alone — especially medical folks and hospital staff. I literally only wanted answers.

But instead, it was a constant barrage of questions about why I was looking for help, why I was seeking assistance, why I thought there was something wrong.

Perhaps that’s one of the reasons that concussion is associated with a higher suicide rate. I’m sort of joking. But not.

Being all alone in this — and having everyone around you treat you like a “head case” who’s trying to get attention or sympathy or reassurance — it was pretty devastating. And I know I’m not the only one. There’s a whole science around detecting people who are malingering… and there’s a syndrome named after it — Munchausen Syndrome, named after a fictional German character known for embellishing his stories.

I’m not saying it happens to everyone. But it strikes me that within the medical and neuropsych community, there’s a fair amount of lacking regard and treatment of concussed folks.

So, if you find yourself in the un-enviable position of being treated like an attention-seeking drug addict who’s taking up precious time better used on people with “real” problems, rest assured, you’re in good company.

I wish it weren’t so.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

10 thoughts on “Lasting #concussion symptoms? #PCS? Welcome to Castle Munchausen”

  1. We’re fortunate enough to live near Philadelphia and have a top notch interdisciplinary head injury treatment center at Thomas Jefferson University Hospital. Instead of having practitioners in different specialties (neurology, psychology, psychiatry) working in relative isolation, the Headache Center uses a team approach in developing diagnoses and treatment plans. I expect there are other facilities like this, but I’m not sure you have found one. Founded in 1982, I’m told the Jeff facility is the oldest and some NFL players go there for treatment.
    http://www.jefferson.edu/university/jmc/departments/neurology/programs/headache.html

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  2. That’s great to know. I actually have family who live within a couple of hours outside of Philadelphia, so I could possibly stay with them, if I were to look into that. I’m not far from a major metropolitan area that has a lot of hospitals, so I may have some options. I’ll know more when I talk to my new neurologist. Thanks for the info.

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  3. You don’t get a neuropsych “writing off” a patient when its a team headed by a neurologist that is doing a consensus diagnosis. Entirely different ball game. Onboarding a new patient is a lengthy process because all of the key players see the new patient separately, then meet to discuss. They say to allow up to 5 hours for the initial appointment. My wife goes there.

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  4. I concur! And my last Neuropsych was done at n organisation that caters to people with an ABI from drug & alcohol abuse. I’m High Functioning, as in no trauma. Not all ABI’s are the same.

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  5. Yes, it is incredibly problematic. We get lumped together with others, for whatever reason, and then we don’t get the specific help we need. Unnecessary suffering abounds. But enough going on about it here. Let me write a blog post about that…

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