Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.

Onward.

 

 

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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.

8 thoughts on “Doctors: They’re just so far away from us”

  1. BB –

    FYI – most neurologists have little to say or do with mild brain injury other than to say ‘you may have one’ and refer you. There is simply nothing they can do with the possible exception of gathering baselines information so that years from now if you develop any new symptom they may be able to relate it to the brain injury. So one of the first things you need to do is understand what you hope to get from the neuro.

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  2. Thanks – great points. I need to speak with someone about my vertigo, dizziness, headaches, and tremors within the context of all the TBIs I have had. My pcp is a bit out of their depth. I need diagnostics, rather than fixes. I expect to do a lot of fixing myself, once I have more info.

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  3. However “systematic”, it’s seemed to me, it’s the “I just keep searching”, which seems the key there.

    Cheers for the post, again, BB. I’ve only responded once before, a few years ago, – Really, posting to your blog a few years ago was kind of the ‘coming out’ party with/for my own hidden-in-plain-sight,…& it quite arguably has led to my “warmbeverage” blog here on wordpress, certainly to “My Dinner With….” etc.
    I thank you for that, BB.
    I thank you for your perseverance; & for your ‘thankless’ work to share what you have and do here… I don’t often take or get the minute to read each one, much less make comment, but, I appreciate you doing YOUR searching and doing whatever that takes.

    Much love, One Love, m’friend.
    Happy Season!
    —Ramey

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  4. Hey Ramey – thanks so much for your kind words. Really picked up my day! Rest assured, I’m gonna keep on keepin’ on, as they say, and stop by any time you please. Have a completely excellent year-end wrap up, and a very happy and safe New Year!

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  5. There are definitive changes brewing in the medical system of neurology bringing new hopes to patients with neuro problems. Current neuro patients are paying the heavy prices in what it takes to being a neuro case in point, Whether due to initial trauma or subsequent treatment we are being treated as second-class humans without civil rights within the health care system, treated as though we are law-breakers, On Christmas eve, the police called, being accosted and nearly arrested in the hospital. They were called by the hospital because the hospital said I was “rude” and had theerefore been “trespassed.” Taken in by ambulance in need of immediate help for a r/o stroke, it was found I had multiple break-through seizures that evening, told to stand on the outside corner of the hospital property due to being loud, I did as long as possible in my thin sweat-shirt, I returned to the warmth of the indoors and sure arrest, saying it was, “…inhumane to force me to stand outside in the freezing weather.” Now I fear this new vanguard of for-profit prison-holding and health care teams-manship, over temporary incompetencies due to neuro illnesses, will only result in a plumped-up and feathered new asylum-typing of the same type of people that were released from asylums in the ’70s and all other sociological sub-groups in need of social services, is a mere band-aid approach to social services today.

    Asylum-typing via arrest is inadequate and is a systemic problem in treatment of people needing help in our society. Being “roughed up” (handcuffed for arrest) in the hospital by the police at the time my sister arrived to take me home, the police finally released me to my sister and allowed her to take me home. What has become of our hospital system wherein we treat people with neuro-illnesses as auto-convicts when in need of social services? For whose purpose did that serve? I had called my doctor from the call phone at the ER when I was being threatened by the security staff, as she had previously told me in office visits, to “Make sure the ER calls me, so I can advocate on your behalf.” Well I did, when I could not reach my family, I was being threatened by staff and security. I will also need to contact my attorney.

    Being a neuro-affected patient does not automatically equate with having lost all civil rights and the loss of assistance in the hospital systems of the US. These hospital systems are supposed to know how to treat our maladies and are also supposed to know how we are affected by our maladies. This hospital and it’s staff did not know how to treat my malady on discharge procedures, it did not recognise how best to assist my efforts to help me return home while still seizuring. Instead it did everything in its power to make me look as though I were insane. I will follow through with my epileptologist, may even change to another facility if this facility cannot get their staff-act together. These people refused to help a seizuring/medicated individual, rather they sought to treat through threat and intimidation. Their turn of illness in their elder years is moving toward them, bearing down on them rapidly from their collective futures as bowling balls move rapidly toward the targeted pins on the alleys of life.

    Because I know, doctors will also be in need of the hospital system in which they currently play a bit part, as a well person. I am in hopes, they too will have the courage to participate fully as patients, to better this system for all patients. Whether doctors or other medical staff, all are continually forgiven for their errors of thought, as regards patients and patient care. They really do not have a sense of reality, in what it is to be ill, or the true nature of disease. Only until they are facing dis ease itself, when they are the subjects of dis ease itself and the subjects of study, driving the institutions of dis ease, will they understand.

    I take up their time today, unapologetic because dis ease will take their lives tomorrow in myriad unforgiving ways. In between, facilities and staff will be unable and ill prepared to meet their needs, unless I forge ahead in my unique ways, I make my needs known today. At times that may involve contentious and unwanted information or requests for assistance from patients. I only hope these current day providers not experience the same chastisement and abuse, when their time of dis ease arrives. That there would be no need to take up the gauntlet of courage in helping shape a medical system that will respond as it should, to not pelt the sick and diseased with derision. My having arrived in illness afore them, has me hoping these proud providers will not shrink from the lessons I have learned, have now presented before them.

    That our providers will follow through, as they believe they should, their destiny awaits. We keep our journals and make our notes, will they be apt to listen? If not listening now, will providers be more apt to repeat the same mistakes for which they may/maynot abuse, it will surely invoke a harsher sentence half-century from now due to lack of health care empathy, currently. And so, I have compassion for them, they did not know what they were doing, in reality their ignorance far surpasses what their skill set encompasses.

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  6. Wow, I’m very sorry to hear all that happened to you. I hope you can find some resolution to this, and also recover from the experience. The medical system truly needs some overhauling, not to mention some serious training. I am hopeful that the next generation of neuros can share more information via the internet and also become sensitized and more expert in important ways. I have hopes that the interconnectedness of us all will bear fruit in time.

    Best of luck with all that stuff, and I hope you have a better start to 2015, than the end of 2014!

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