What’s in a word? Finding out how we talk about #TBI and #concussion

Here are the vast majority of the unique terms in Ruff et al.'s 1996 "Miserable Minority" paper
Here are the vast majority of the unique terms in Ruff et al.’s 1996 “Miserable Minority” paper

I’ve been doing a lot of reading, lately, about the “Miserable Minority” – the roughly 10-15% of the concussed population who do not recover fully within 3 months of their injury.

I managed to get hold of a copy of the paper, and I’ve spent days reading and re-reading it, marking it up with my notes, and wondering about how to think about this.

Since I work with data on a daily basis, I decided to get some metrics around the words that are used in the “Miserable Minority” article. I copied all the text out of the paper, stripped out the citations, removed the headers and footers, then the text through a program I developed to grab the numbers of unique terms in the text.

I removed the “stopwords” — common words like “a”, “the”, “and”, etc — and I took out the numbers. Here are the top 20 most frequently used words in the paper:

Rank Word Frequency
1 her 123
2 in 114
3 she 88
4 with 71
5 was 60
6 for 49
7 had 46
8 mtbi 45
9 on 38
10 this 37
11 he 37
12 not 33
13 or 30
14 from 28
15 have 28
16 were 27
17 his 26
18 emotional 24
19 but 23
20 can 23

So, you can see there’s a pretty strong focus on the female aspect of it. And of course, there’s the emotional part, too.

All in all, there are over 1,800 unique terms used in the paper, which surprised me a little bit. I kind of expected some clear “winners” to come out, but the authors cover a lot of ground. But if you look at the larger picture (click the wordcloud image above – it will open in its own window) there is a strong emphasis on emotional symptoms and premorbid conditions.

That’s not surprising, since the paper pretty much boils down to the idea that while mild TBI / concussion is a widespread and problematic injury throughout the population, the brain injury itself is not to blame for symptoms that last more than 3 months. According to the paper, concussion issues should clear up within 12 weeks or so, and if they don’t, there’s something else going on — something pre-existing, like a rough childhood or a history of abuse.

According to the authors, mild TBI may trigger unresolved issues — or re-ignite formerly settled issues — thus causing the patient to mistake them for brain-injury-related issues. They admit that imaging is not yet sensitive enough to pick up microscopic damage. However, that was 1996. This is now. And 20 years later, we know from research that concussion does indeed cause structural changes to the brain. The damage is subtle. But it’s real. And repeat concussions result in cumulative damage which can produce significant deficits on down the line — whether due to yet another TBI (like the one I had in 2004), or organic changes that come with age.

This whole idea that enduring TBI symptoms are emotional and psychological in nature needs to be revisited. We simply know better now. And to persist in that old ideology serves neither the patient nor the provider, who may be struggling to understand why the patient is responding the way they are (or aren’t).

We know that concussion alters the brain. We know that the biochemical cascade that’s unleashed in the cells of an injured brain can have lasting consequences over time. We know that even a blow to the body can cause concussion, without the head ever being impacted. We know so much more about the mechanics of the process, than we did 20 years ago. So, why would psychologists and neuropsychologists persist in relying on outdated assumptions based on obsolete data?

They shouldn’t. They should change their “tack” with regard to assessing and treating mild traumatic brain injury in the PCS population. And that’s true for men, as well as women.

Perhaps most importantly, they need to change how they talk about PCS — and stop labeling us similar to malingerers and attention-seekers. Stop with that foolishness, already. Get your facts straight, and quit calling us names. If you can’t seem to help us, don’t assume it’s us — maybe you just aren’t taking the right approach, and you need more (and better) information.

While Googling “miserable minority”, I found a sign of positive progress. Result #3 at the top of the page is a December, 2014 article on the American Psychological Association’s website,”Women and mild TBI“, which makes some great points about how the designation of “miserable” and “minority” blurs the topic and puts the focus on psychological, rather than organic issues, thus missing the mark in terms of understanding the true nature of “mild” TBI.

Not only that, but that choice of words / approach runs the risk of sending

“the message that “this is all in your head” (pun intended). . . unintentionally foreclos[ing] scientific inquiry, driv[ing] persistently symptomatic patients away from the resources meant to proffer support (to them and their families), [and] reinforc[ing] ugly .. . stereotypes”

The article focuses only on women, but you could expand the reasoning to include men — and children — in the population of concussed folks. It’s a great read, and it comes from someone in the mainstream — a professional, no less, which gives me hope. Check it out — I think you’ll like it.

Brava to that. Clearly, there is a gender component to professional understanding and treatment of concussion/mild TBI. But only recently have researchers discovered significant differences in how men and women are brain injured and heal. It’s been a long time, coming, with countless individuals marginalized and stigmatized, simply because the folks who were treating them didn’t take them seriously.

Now that new imaging techniques are coming out and researchers are finding (and talking about) the fact that men and women may have very different experiences before, during, and after concussion, I’m hopeful that some of the really harmful materials that have steered (mis)treatment will be revised, with the harmful parts thrown out.

This isn’t isolated to women, either. PCS occurs with men, as well. And one of the dangers that comes along with a gendered focus, is that the men who suffer from prolonged symptoms may get lost in the shuffle. There’s so much activity — flurry-flurry-flurry — rush-rush-rush — around concussion, these days, that people seem to be racing towards conclusions without stopping to consider all the aspects.

Sure, it’s only human to do so, but what about the human cost?

Ultimately, it’s going to take a lot of rethinking, a lot of advocating, and a lot of promotion/publicity to get people to change course. There needs to be a compelling reason to do so, or professionals aren’t going to deviate from their preordained patterns. Even if it means they “risk coming up on the wrong side of history (again)” as the Gorgens article says, unless there’s an overwhelming body of proof — as well as incentive to go with it — providers are going to keep on keeping on their usual track.

Where that leaves us, I’m not sure.

I know there are some providers out there who are interested in learning more about how to better help the folks who continue to suffer with post-concussive issues. And I know there are some who are genuinely curious and good-hearted, who want to do the right thing. We just need more information out there about the cutting-edge research that’s being done, and some advocacy would help.

There are folks who are doing that, but they/we are few and far between.

Still and all, if we get the right information in to the right hands and provide the right motivation, who knows? We might just be able to move that needle in the right direction.

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.

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