I guess I’m feeling sorry for myself today. It started this a.m., when I had a pretty intense discussion with my new shrink about what I was going to do with the information that came from my new neuro. After talking with totally outraged friends who were incensed that my present neuro didn’t tell me about the pineal cyst and were miffed about how my experiences were described in the letter to my PCP, I was seriously considering looking for a new neuro.
Until my shrink talked some sense into me.
Said they, “So, this is Neurologist Number … Three?”
Said I, “Yes.”
Said they, “You can’t keep jumping from doctor to doctor…”
Said I, rather abashedly, “Uh… I know…”
We had a pretty frank discussion about how the medical profession is not having a particularly good century, thus far, and how doctors have so much pressure on them, these days, so there’s only so much I can expect from them. And there are plenty of people with much more pressing problems than mine — which are really borderline and are more exploratory than anything else, at this point. True, there are things that have been going on with me for some time, that I’ve been urged to follow up on, but it’s not like I’m in serious trouble and unable to function at all.
I’m high functioning in some ways. In others, I’m less so. It’s getting past the okay stuff to the problematic pieces that’s the major conundrum in my life.
Frankly, I’m not sure I’ll ever be able to get to the bottom of what needs fixing, so I can function as well as I can all across the board. Not really. I just can’t describe my symptoms and issues in ways that others can understand. At least, I haven’t been able to do it, yet. Maybe someday I’ll be able to, with the help of a speech therapist, but right now, I have no great hope of it. I’m just so awful at communicating what’s going on with me, when pressed for information. Just awful.
And it just pisses off the people who are trying to help me.
So, I’m beyond help.
I don’t mean to sound depressed or anything, even though I kind of am. I guess I just had higher hopes of being able to connect with medical folks, and not only failing at that, but also being told there’s no great hope of me being able to do it any better with anyone else, bums me out, too. I’m probably being a drag, right now, and I apologize for that. But for others out there who are dealing with TBI stuff, and for the sake of those who are trying to understand what people like me have to go through, I hope my words can help shed at least a little light on what problems TBI folks face in seeking health care.
I suspect this is going to be a pretty significant issue in the coming years, as our veterans return from Iraq and Afghanistan with head injuries and PTSD and lots of other issues that they need help with. What is this country going to do, when thousands of folks with communication and self-assessment problems like mine — and physical conditions that are far more severe — show up needing help? What are the doctors and nurses of this country going to do? Shrug their shoulders and say, “Oh, well…” and turn away? Or dismiss them as malingerers? Or, absent any clue about what the real problems are, pump them full of drugs that will either ease the symptoms or knock them out sufficiently to not notice them so much?
It makes my heart hurt, to think about it. It’s bad enough that I have to go through all this, when I’m relatively able-bodied and in possession of my faculties, a job, a house, a family, and a relatively stable life. But those who are far less fortunate, and who have paid an unimaginably high price for the sake of this nation… well, it just seems awful to me.
What seems even more awful is this attitude I keep coming across about how doctors have to work hard enough at their trade, without having to extend themselves for people like me. As though learning to communicate with me and figure out what’s up with me in ways that are accessible to me doesn’t matter one bit. As though any communication breakdown is totally on me. I am more than willing to do everything I can to communicate with my doctor(s), but I’ve been injured a bunch of times, and I’m a bit impaired, so I do need some help.
That’s why I seek out medical attention, to begin with. And that’s why I try like crazy to communicate in any way I can find… only to be rebuffed by docs who are irritated at my approach and don’t really have the time to get to know me well enough to tell if I’m really okay, or if I just think I am.
I really want to be positive. I really want to be hopeful. I really want to be generous and gracious and extend myself to my beleaguered doctor(s). But right now I’m too tired from being lectured about how hard doctors have it, and how I can’t expect too much from them, and how other people are much worse off than me, so I shouldn’t take up too much of their time, I’m too frustrated, too … well, everything… to see things in a rosy light.
The ironic thing is, I started out this whole quest from a place where I was totally DIY with regard to my health. I stepped into the fray, agreeing tacitly to call a truce with the establishment and give the medical field the benefit of the doubt, and keep an open mind, be compliant, try to be the best patient I can be. But now I’m being sent away again.
So, I’ll just keep looking. I’ll keep asking questions. I’ll keep recording my life. I’ll keep pressing for answers I need, even if I have to look outside the usual areas (and inside my own heart) for the answers I need. I’ll go back to doing things the way I always have — on my own, because nobody else has the time or the energy or the willingness to help me in the places I’m the most vulnerable. And I can’t leave myself wide open to that level of dismissal and neglect.
Not anymore.
Broken Brain - Brilliant Mind 
For 10 years my PTSD was so bad it created extreme, debilitating symptoms and conditions in my liver, stomach, intestines and bones. I went from doctor to doctor looking for care. What I got were puzzled faces, irritated expressions, refferals to specialists, and erroneous disease diagnoses.
I understand how weary and wary you are. I’m sure it’s even worse given your difficulties communicating.
As I read your post, though, I had the thought, “But this writer CAN communicate!”
Have you considered writing out what you need the docs to know and then handing it to them, or sending it ahead of your meeting? You’re very clear, intelligent and thoughtful in your posts.
My trauma was medically related, so going into any medical situation triggered me to the point of emotional overload and muteness. I couldn’t focus, concentrate or stop shaking. Ironically, my PTSD symptoms forced me into constant medical situations. I began writing out what I needed to say since I could not say it in the moment. This helped me communicate better. In case it would help you I thought I’d share the idea. I have another friend who’s doing this as well and it makes her appts. much smoother, too.
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Hi Michelle –
Absolutely. I totally agree with your suggestion. (And thanks for the vote of confidence about my writing.)
I have actually tried to do just that — write things out ahead of time to take with me to the doctor. Unfortunately, my efforts have not been met with a lot of success. There are a couple of reasons I think this is/was the case:
First, my notes didn’t have the right information in them. I either had too much detail or not enough. I hadn’t yet gotten the test results back that I have trouble getting mired in detail, and I was unwittingly packing my notes full of incidental information that wasn’t useful.
In some cases, the doctors I was seeing refused to read them. One of them took my notes and set them aside and said they’d read them later. One of them told me to put my notes away and wouldn’t let me refer to them. They then commenced to grill me about symptom details that got all turned around in my head and were pretty rough on me.
I’ve also got some residual coping issues (probably PTSD) from years of dealing with an intransigent medical issue — chronic debilitating pain — that didn’t respond to treatments. So, going into medical situations does get me turned around and uptight. And even when I do bring notes with me, my “stuff” gets in the way.
My anxiety tends to express itself as aggression, and doctors don’t respond well to that. I’ve always had issues with people interpreting my “concentrating” facial expressions as hostility. Apparently, I look angry and confrontational, when I’m trying hard to think things through. There’s this whole subtext of crossed-communication that takes place between me and folks in positions of authority that doesn’t bode well for my health – mental or physical. But my “gears” work slower than I’d like them to, and it’s hard for me to keep up with what’s happening and clear things up. It just gets messy, with the doctor asking me a question, me getting turned around — and frustrated in the process — me trying to think-think-think, getting confused and anxious and starting to rev up… the doctor thinking I look like I’m angry at them or am hostile… and me sensing that something isn’t right, here, but not being able to figure out what it is, and not being able to keep up with the conversation for “damage control”.
I think the worst part is having the docs not recognize or accept that I have certain cognitive issues that really get in the way. I suspect that on some level, they don’t want to think that I’m that impaired. A lot of people in my life don’t want to believe it — either because they really care about me, or the idea of TBI scares them too much. And the hidden disability trip does a number on me and my doctor-patient relationship.
I guess when I’m in tense situations — with doctors, especially — I tend to lose it. I wish my PTSD were the only issue I have, but there are these other “islands” of difficulty in a sea of uber-competence that pose real problems. They’re like shoals under the surface of an otherwise sailable strait. If I — or my doctors — get too close to the shore, we can get shipwrecked. And that’s what keeps happening.
I’m sure I’ll figure this out, one way or another. I’m working on putting together a strategy for dealing better with doctors. It’s got pictures and statistics and will have brief bullet points highlighting both my strengths and my limitations. I’m still “noodling” about it, but it’s very clear that I need to create it and have it on hand to give to my doctors. Perhaps a pamphlet…
In any case, I’m drafting a copy by myself, where I can be silent and centered in my own head and not get stressed by input from others. Then I’ll show it to my new therapist and other friends. Then I’ll print up a bunch of them and send them to my doctor(s) so they have them on hand. At least I’m going to give it a shot.
Thanks again for your words.
BB
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Hey BB,
Stopped by for a few to see what you’ve been up to. I’m sorry to hear you’ve hit a rough patch with the medical community again 😦 It has to be the single most disappointing adventure for a patient seeking care… knowing what they know about themselves, their problems, and how they can be helpful… to be almost neglected by the care you seek.
I have no answers, unfortunately. I do still feel firmly that nobody; doctors, researchers, advocates, rehab facilities… NO ONE really knows much about our issues. This will never undermine the pain and fear that is felt by being turned away after expressing your concerns to notable practioners that you would hope are ‘educated on your condition’ to know exactly how to help you. It is not ok to dismiss their actions as if they have better things to do… but its very hard to actually sit back and say “maybe they really don’t know either… maybe the information just isn’t really out there yet…”
The rollercoaster. Not a fun ride sometimes. But finding a practioner that might ‘reject your ideas’ but can remain empathetic to your concerns and on your good side may be the best we can do as patient’s right now.
I love your insights. One day… one day in the far future… I might be as efficient of a blogger as you are!!
Best,
NEdream26
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Thanks NEDream –
Well, if you’re not as compulsive a blogger as I am, chances are you have a life 😉
I have been holed up with my computer(s) for so long, I’m starting to get a little gamey. But it’s all good.
Education, education, education… Thank heavens for this internet. It actually lets us get our ideas and experiences out there, and who knows, maybe a doctor or two out there will be reading this? I can only hope. I actually feel pretty badly for doctors, these days. They are dealing with more and more intense stuff — once upon a time, people just died from the things we experience now, but now we survive them… and expect doctors to patch us up.
It must be very traumatizing, to have to deal with such life-and-death stuff all the time, never being able to catch up on your sleep, being under constant pressure to save people’s lives or protect them from themselves… It must be next to impossible to practice medicine today.
But that doesn’t make it right to abandon your Hippocratic Oath and take out your issues on your patients.
Somewhere we have all got to reach an agreement… or our situation is just going to get worse. We have to cut each other a break AND take more responsibility for our own stuff. Just how we do that, I’m not sure. Maybe I’ll go out and see if I can find some med student/doctor blogs…
Anyway, be well and hope things are looking up for you.
BB
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