It’s not just women who suffer from isolation after #concussion #TBI

lonely-umbrellaI knew there was a risk of leaning too heavily towards a gendered approach to concussion and TBI treatment with my last piece. It’s very tempting to narrow the focus to one specific group or case, when you’ve got a set of research looking into that. And it’s tempting to focus on subgroups who have been traditionally overlooked.

I do think there’s a lot to be learned from considering special characteristics of people, but that can leave out the needs and circumstances of those who are on the margins of the margins… or those who “don’t belong” in the subgroup, but don’t quite fit in the mainstream.

And so the pendulum swings from one side to the other… Women are marginalized… Let’s put women in the spotlight… And then comes the very human response of folks who feel left out because, well, they are left out, but they also need attention. So, the discussion may end up “pinballing” from one special case and group to another, until everyone feels simultaneously noticed and disregarded.

Funny how that goes.

The thing is — and this is especially true of brain injury — there’s no one silver bullet that’s going to fix it all. Everyone is different, everyone’s experience is different. What works for one, might not work for anyone else. But that way of exception-stymied thinking can stand in our way. I think that’s actually hindered the development of treatment innovations, because the perceived differences and variations between those millions of survivors seem to preclude a consistent, systematized approach to treatment and recovery.

But there is one thing we all have in common after TBI. Brain injury is an assault on your person, as well as your place in society and your community. So, when it happens to you, it happens to everyone. And the folks who are sequestered to heal from their mild TBIs, due to doctors’ orders, drop out of a social circle that depends on their participation to be complete. Unless you live as an island with no social contact at all, that experience is going to be shared with millions of other concussees and TBI survivors.

When a social circle loses a piece of itself, it’s traumatic by its very nature, because the integrity of the group has been compromised. Losing a connection that gave all the members a coherent and durable sense of who they are, represents a loss to all of the members — a group of friends, a clique, a team at work, a sports team, etc. The loss doesn’t just affect the injured party — the whole social circle and all its members have been impacted as well.

When a concussee is a member of a tight-knit team, the sequestration after mild TBI will absolutely contribute to their level of stress. They’ve lost the connections that tell them who they are, that remind them of their identity, which bond them with others who help them through the hard times. You can never, ever overestimate the importance of the team, when it comes to the spirits of everyone who’s a part of it. And you can never, ever underestimate the negative impact of losing that sense of belonging… that sense of self… that happens when you’re suddenly pulled from the center of the group.

So, while their tend-and-befriend impulse may predispose them to affiliating more in times of stress, women aren’t the only ones who take a hit when they lose their connections with others. (And let’s not forget that not all women are equally inclined to bond with others for reassurance and nurturance.) Anyone who relies on the support of a group, who is cut off from that connection, is going to struggle in sequestration.

What does this mean? What does it imply? I’m suggesting that we reconsider the way we respond to concussion / mild TBI in the acute phase (within the first 7-10 days when the brain is righting its impaired metabolism), perhaps exploring ways to actually increase the sense of connectedness and support, rather than limiting it.

One possibility (this occurred to me last night, as I was drifting off to sleep), is the use of therapy dogs (or cats) post-concussion. Therapy animals have been shown to reduce stress and provide companionship to folks who for whatever reason aren’t integrated into the larger community. And service dogs are becoming common with folks after TBI, especially veterans.

For those who can’t take on the care and feeding of an animal full-time — and who may not actually need a service dog — I could see how daily visits from a therapy dog could help reduce the stress and foster a sense of connectedness. I know it’s being done for folks with moderate and severe brain injury, but I think it’s just as valuable for folks with “just” a concussion of “mild” TBI. Especially in those days and weeks immediately after, when everything is so confusing and uncertain…

Animals can offer a special connection that has nothing to do with computers or devices or texting or television or any of the other modern (and medically proscribed) ways we connect with each other. You don’t have to work at a relationship with a therapy animal. But you can interact, get some lovin’, and have the contact you crave with “someone” who isn’t going to judge you or criticize you or make you work at interacting with them.

Another option might be educating members of the social circle about concussion, and fostering regular (limited) contact with real people, in real life. This is going to be more logistically difficult, because everyone is so busy, and with work / game schedules, it can be tough to carve out time. But just having some contact with your social circle is better than nothing at all. One of the big barriers to that happening, is fear and uncertainty and insecurity about brain injury in the wider population. It’s a tough nut to crack, but having some info and guidelines in place might help.

Those are two ideas for maintaining “low-impact” contact with the outside world immediately after concussion. I’m sure there are many more viable options. It’s all an evolving process, and more ideas will emerge over time. There’s lots of opportunity — it’s just a matter of what we’ll do with it.

I certainly hope we do. Because clearly, women aren’t the only ones who suffer after mild TBI and concussion. They may suffer in more specific ways, and the things we do to help may make things worse, but the same could be said for many others.

We’re literally all in this together.

Women and #concussion #TBI – do current treatments make things worse?

work-against-womenSomething absolutely critical occurred to me today, as I was scanning the tracking data for a technical website I optimize. Pardon me, if I’m behind the times on this — it just occurred to me, but after some admittedly cursory Googling of terms, I found no evidence that anyone else had made or published about the connection I’m about to discuss.

The Burning Question That Needs To Be Answered:

Do the ways we currently treat concussion / TBI actually work against the women who have been injured?

I’ve been influenced, of late, by a good deal of conversation about women and concussion, including my reading about the “miserable minority” of mild TBI survivors (mostly women) whose symptoms persist past the 3 months they’re expected to last. After decades, we still have double-digit percentages of PCS sufferers who continue to deal with sometimes debilitating symptoms. There is some compelling dialogue going on, and it’s been quite eye-opening.

I’ve also been amazed that only recently have people started studying the differences between male and female concussions. Implausible, but true. It seems logical, that there would be a difference in both the mechanisms and the experiences, yet the discrepancies are just now beginning to be explored. It’s a good change, but I’m surprised it’s this recent.

And after giving this a whole lot of thought for some time, I now have to wonder if we aren’t missing something. Could it be that concussions are worse for women, not only because of their reported heightened susceptibility (this may turn out to be untrue, eventually), not only because they’re “more likely to seek medical care”, but also because of the way concussions are treated?

Gender differences aren’t just about physique and conditioning. They’re also about how men and women respond to the world around them, especially stressors. Some years back, around 2000 or so, my psychotherapist friends were excited to share a new theory that was emerging about how women respond to stress. It’s the “tend and befriend” theory, developed by Shelley E. Taylor, Ph.D. (and others) of UCLA. Dr. Taylor’s publications and news stories about theory can easily be found in a simple Google search for “tend and befriend”.

Essentially, the theory states that:

… human beings affiliate in response to stress.  Under conditions of threat, they tend to offspring to ensure their survival and affiliate with others for joint protection and comfort.  These responses are underpinned by an affiliative neurocircuitry that appears to be based on oxytocin and endogenous opioid peptides.  When close relationships are threatened or one is socially isolated, a rise in plasma oxytocin occurs, a biological marker that may signal a need for affiliation: Oxytocin prompts affiliative behavior in response to stress, in conjunction with the opioid system.  Together with positive social contacts, oxytocin attenuates biological stress responses that would otherwise arise in response to social threats.  These social responses to stress and their biological underpinnings appear to be more characteristic of women than men.

[bold emphasis is mine]

So, under circumstances of stress, women tend to bond more than men. They pull together, forming connections in the face of threat, while men more often resort to fight-flight. Obviously, there will be exceptions, but that’s the gist of it.

Concussion / mild TBI can be a deeply distressing and stressful experience. Especially where no information is given, and no explanations for symptoms are offered, you can end up feeling completely alone. With women, the common impulse might be to reach out and affiliate with others, for support and nurturance and protection.

The only problem is, that’s not how concussion is treated.

If anything, current protocols for concussion treatment involve isolation and strongly curtailed interactivity and stimulation.  According to the Mayo Clinic website:

Rest is the most appropriate way to allow your brain to recover from a concussion. Your doctor will recommend that you physically and mentally rest to recover from a concussion.

This means avoiding general physical exertion, including sports or any vigorous activities, until you have no symptoms.

This rest also includes limiting activities that require thinking and mental concentration, such as playing video games, watching TV, schoolwork, reading, texting or using a computer.

Your doctor may recommend that you have shortened school day or workdays, take breaks during the day, or have reduced school workloads or work assignments as you recover from a concussion.

As your symptoms improve, you may gradually add more activities that involve thinking, such as doing more schoolwork or work assignments, or increasing your time spent at school or work.

Physical and mental rest is a solitary activity. Limiting activities such as texting and computer activity, nowadays, essentially cuts you off from your social circle. Shortened school and work days keeps you out of your customary circle of support.

To me, that means women and girls who are concussed and given the same recovery guidelines as men and boys may actually suffer more short-term stress from concussion than males — specifically as a result of the recommended treatment. Cut off from their affiliations and support networks, women are literally unable to obtain the positive social contacts which produce the oxytocin that attenuates biological stress responses.

According to Taylor (and many others), “men may be somewhat more likely to cope with stress via fight or flight“. So one might reasonably expect the impact of isolation after mild traumatic brain injury to be less disruptive to men’s recovery process. However, for females, it’s a very different story, because their primary means for coping with stress (connecting with others in ways that reduce the biological stress response) has been medically prohibited.

What’s more, since stress is known to increase post-concussion symptoms, it seems likely to me that prescribed isolation and contact deprivation might actually be a contributing factor in the duration and severity of concussion symptoms in females vs. males.

Again, males have been seen to use fight-flight response, so isolation may tie in with that flight impulse and soften the impact of their downtime. Because the deprivation treatment model works for male concussees — and the majority of folks with mild TBI — it’s judged a relative success, with PCS cases being an unfortunate exception. And the unconscious assumptions that “what’s good for the gander is good for the goose” essentially camouflages the inherent shortcomings of concussion treatment protocols for females.

Obviously, more needs to be done to connect the dots and substantiate this unequivocally. I’m sure there are other aspects to this, of which I’m not aware. And it would be helpful if domain experts could weigh in on this.

Who knows? Maybe at the Pink Concussions Summit on Feb 27, this will be addressed. The bottom line is, there are connections to be made that can shed more light on this subject, and the more we keep looking, keep inquiring, keep collaborating, the better chance we have of finding resolutions and approaches that can make life a lot better for a whole lot of people.

The roots of our brain injury recovery

What's beneath can be much more compelling than what's visible
What’s beneath can be much more compelling than what’s visible

Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.

That change can be temporary — the vast majority of concussions and mild TBIs resolve within several months. Or it can be lasting. With stroke, acceleration / deceleration injuries, or aneurisms, the recovery can be complicated, and 10-20% of concussions / mild TBIs actually do NOT resolve within a few months, but endure for many months… sometimes many years.

Persistent post-concussion symptoms are a problem that’s challenged healthcare providers for many decades. Once upon a time, it was believed that un-improving symptoms were purely related to litigation — after the lawsuit was won, it was assumed that complaints would clear up. But that proved to be an unreliable assumption, as health providers continued to see brain-injured folks show up, asking / demanding / begging for help… the kind of help that the providers frankly didn’t seem to be able to provide.

Then along came the assertion that post-concussive syndrome (PCS) symptoms were related to a history of mental health issues that simply got “re-triggered” by the mild TBI. It was claimed that the “miserable minority” of PCS sufferers were either A) grappling with unresolved traumas and psychic wounds that they never dealt with before and could no longer shut out, thanks to their injury, or B) they were regressing back to an earlier state prior to their successful resolution of those issues, and were experiencing a need that remained / seemed to be unmet.

Despite plenty of research around persistent PCS symptoms (there are thousands of papers on Google Scholar about PCS and the “miserable minority”, and Google.com returns nearly 9,000 results for “miserable minority” and post concussion syndrome), 10-20% of concussed individuals continue to experience symptoms. So, the information and treatment doesn’t appear to have had significant effect, in all the years they’ve been working on it.

Personally, I think that the emerging capacities of neuroimaging, as well as ongoing research connecting the dots between organic and psychological factors, will go a long way towards alleviating the pain and suffering. At last, we have a way to see into the “black box” of the brain. At last we have the ability — and interest — and funding — to connect the dots of this “Monet” of brain injury — everybody’s looking at it up close, and when you do that, it looks like an unholy mess… but step back and take it all in, and clear patterns begin to emerge.

But we have to look. And we need to have the ability to step back from our own little corners of the investigative, diagnostic, rehabilitative, and experiential world, and consider other possibilities. Some of those possibilities may fly in the face of what we have believed and promoted, lo these many years. Indeed, some of them might threaten our way of life, our reputations, our ability to make a living.

Those are existential threats — threats to our reputations, our livelihoods (and by extension, our lives) — so, not only do we need to be mindful when we’re discussing approaches that might put people out of a job. But perhaps even more importantly, we also need to be aware of how our own sense of threat/defense works against us our thought process, and puts us farther away from constructive solutions.

Ironically, the safer we play it, the more we run the risk of endangering our collective progress.

And of course, it’s not just academic, medical, or scientific progress that’s at stake. When it comes to concussive brain injury and enduring PCS, people’s lives are very much impacted by professionals’ inability to get their collective act together. That’s true for survivors, their immediate family, friends, employers, larger community, and our extended healthcare system.

Nobody is un-impacted by TBI. Nobody.

So, where does that leave us? Where does that place us, in the larger context of life?

When it comes to TBI / concussion recovery, I believe we will be well-served to look past the superficial professional approaches that emphasize psychological approaches. We need to look beyond the behavior, get out of our reactive cycles towards the way people behave and the meanings they appear to assign to their concussed experiences. We need to look deeper — into the biomechanical elements, as well as the functional ways that we respond and adapt to the concussive brain injury experience.

Telling someone, “You’re just not thinking about this right,” is of no help at all, when their brain structure has been literally altered by an impact.

Telling someone, “Don’t worry – it will pass,” when it seems to be taking forever for things to resolve (even if it’s “only” been a couple of weeks) is not encouraging.

We really need to deal with actual hard facts and data — what we logically and scientifically know about concussive brain injury, and what can be done to assist the situation. It’s not enough to tell someone to “rest and take it easy”. We also need to provide reasons why they should rest and take it easy, to recruit their willingness and make them part of the healing process. We have the data, the knowledge, the research-based information to get to the root of the issue – and explain it in simple terms to the people who need to know it.

Why don’t we use that information? Why don’t we just tell people what the deal is, and let them understand the root of their issues? Their brain has been jostled. Chemicals that used to be inside cells are now outside them. Their brain is having an energy crisis and needs time to settle down and repair. The more they rest and do certain things, the better their outcome is likely to be. That information is critical — and it’s actually been shown to prevent the development of PCS.

When it comes to concussive brain injury, we need to get out of our heads and look at the entire body — both literally and figuratively. The physical body. The body of literature and research. The body of community and professional support. We need to dispose of prejudices grounded in outmoded, decades-old neuropsychological mindsets which haven’t proved to alleviate the suffering they were created to address. We need to get real about the organic, biomechanical aspects of concussive brain injury and get beyond the limitations of DSM-driven diagnosis.

Despite Ruff et al.’s 1996 assertion that, in the cases they discuss, “resistance to recovery appears to have had its basis in unmet needs and trauma from early childhood”, I’d bet good money that

A) 9 times out of 10 in persistent PCS, we’re not talking about psychological resistance to recovery, and

B) all the focus on “unmet needs and trauma from childhood” has successfully blurred our vision of organic changes to the brain (and indeed, discouraged the quest to understand them).

I’d also bet good money that the vast majority of PCS sufferers actually want to be done with this shit and get on with their lives.

I know that’s true for me.

And I know that, until I quit all the navel-gazing people were encouraging, and started looking into the biomechanical and organic sources of my post-concussive symptoms, I was stuck in a self-perpetuating cycle of emotional lability and frustration and a fruitless search for help from people who could not help me. Only when I dug down to the physical roots of my issues and learned to see them as the products of physiological changes (which were made worse by my thinking about those changes), did I start to get hold of my symptoms and learn to actively manage them.

It’s my deepest hope that the same becomes true for many, many others.

And soon.

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