My doctors have been really great in comunicating with me when I was in the hospital and when I first left the hospital. Lately I have been calling leaving messages and waiting to hear back. No one has called me back. I call again and they don’t call back or answer. I don’t want to be a patient that is a pain in the a** but I need someone to contact me back. I feel like they aren’t or won’t because I take so long and ask a lot of questions because I don’t understand. I want to be able to trust my doctors. I don’t know if I can now.
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Hey Adilyn,
All I can really say is that it is not unusual. I’ve had one particular Dr tell me he would only make contact if I paid $250 upfront. I was not impressed. As for hospitals most will only see patients if they have an appointment ie Outpatients. Some dr’s DO NOT like being questioned, I found this out the hard way. A surgeon accused me of trying to obtaining information to sue him, which I had/have no intention of whatsoever. I had some genuine questions but never got an answer.
Merl
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I guess what should be asked, is what kind of questions are you trying to get from them?..If you called and said how long is X going to last?..With brain injurys we are all different, what works for you dont with me…It can take years to heal or months, or in my case never fully recover…
By all means I am not making excuses for them!..Do you have any theripist you can call?..They helped me more than all my other doctors combined.
Adilyn,
You are saying, “I want to be able to trust my doctors. I don’t know if I can now.” Your words reflect how doctors appear to not want people to depend on them. From my experience doctors are insensitive about the welfare of others, except as it bears on their own convenience. Also from my experience, beneath the veneer of doctor’s sophistication and sophisticated manners, they are as hard as nails. They do not want patients that ties them down and makes demands on them. It is circumstances they want to avoid. Most doctors have told me, when I feel exhaustion and fatigue, dazed and dizzy, and this vomiting sensation, it is all in my head. I have also been told I cannot be having these physical experiences.
I came to a place I would just walk out in the middle of an appointment because I realized strong-arming doctors never got me anywhere. The neurologist I have seen are the worse, mainly because these people cannot admit they do not know, which makes it more complex and exhausting for the patient. It always felt to me these doctors did not want to bring themselves to believe in something or someone whom they could not understand. In other words, a head injury is an enormous stumbling block and it creates uncertainty in them, which they want to avoid.
You may feel you are in a vulnerable place and too many unknowns. You may feel everything is becoming a source of torment and everything is this unbearable reminder of alienation from life. You may feel the doctors are mocking you and then you feel your failures are mocking you. This tormented consciousness is what we go through with a head injury. The medical field does not understand this and they do not want to hear about it. In my tormented conscious doctors have told me, specifically, it is not their problem. This is where despair can set in and then this can get into a crushing negative self-consciousness. It can make us feel defeated by life and no way to come back to life.
My suggestion Adilyn, as you can, allow yourself to let go of all your expectations. I realize our normal expectations should be respected, but doctors appear to be jack of all trades and the master of none. In other words, these doctors appear sophisticated, but also rationalize their superficiality, which gets so complex and involved. So again, in your letting go of your expectations and dealing with these limitations try to learn to accept. I realize this may feel edgy, sorrowful and painful, yet this place of acceptance is a catalysis. It is where we learn to accept pain and suffering, which shocks us into awareness. In this shock we learn to choose a meaning for our suffering and meaning for our experiences. This is what creates us.
Pain and suffering is a positive force. When we can learn to accept it we then can give meaning to this pain and suffering. Within acceptance we become the self who suffers and the one who transcends the suffering and our expectations. In this moment of acceptance the self is possessed.
I believe in you Adilyn and I am sorry you have to experience this hidden anxiety of the unknown. Acceptance, though, is the starting point that makes all things possible. Acceptance involves painful truth about ourselves. In the simplest terms it is the acknowledgement that one is a limited human being. Thus acceptance develops us within our limitations. Counseling also may help you in this acceptance area, as davOD suggested.
Thank you Adilyn for your precious quality and your realness. Your presence is significant.
I haven’t tried counselling. It is not something my insurance covers and being a preproffesional dancer doesn’t pay well at all. I don’t know where to turn.
My questions are more based on trying to learn what a treatment is. I don’t understand all the doctor lingo that they use. I haven’t seen an outpatient neurologist yet. It’s been over two months. They told me over the phone that want to do all this stuff that I don’t understand what it is yet they won’t work with me to set up an appointment.
So no one has told , or talked to you about therapy for you?..No prescriptions for physical, speech, or anything else?
Adilyn,
You express, “I don’t know where to turn.” I can sure relate to your words, “…. where to turn.” This is my place of rage for me and counseling can just reinforce denial, at times. Counseling is not always the answer.
I am not sure how to express this but your spirit communicates a dance. There appears something about you that maintains yourself in the act itself, like inspired creativity. So it seems this process of turning has a form of creativity and self-creation. It feels like you know how to turn good and bad experiences into growth as a person. And I realize you are writing about turning to others for help and yet it seems to me your inner quality is maybe the place to begin. I am not saying turn inward or live alone in your individual consciousness, rather there is something in you that offers a meaning beyond words.
Possibly this is in the act, spontaneously and mysteriously beyond you, and is something beautiful. Maybe not knowing where to turn is a crossroad of learning to rest in not-knowing. Your hidden depth feels like you will transform this experience into something worthwhile and valuable. Your dance is felt and I believe your creative flow will be a deep source of healing for others with a brain injury.
I am not sure how to express this creative intelligence I feel in you and it appears to be a meaning just beyond me and possibly you. Hope appears to be your dance and what better gift than to have this from you. I am just saying hope and your dance appears to be a high level of consciousness and maybe turning to this gift within you is maintaining this hope.
The only time they talked to me was in the hospital. I left with 10 speech and 10 physical therapy appointments. It’s the neurologist that won’t contact me
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Adilyn, Please be aware that clinics have a huge overload of patients, and it’s simply that they’re trying to give each patient equal time to be fair. It was easier for you to get the attention you needed in the hospital, because hospitals are built to give more energy to those who are in critical need, and now that you’re more stable you’ve got to try to look up some solutions yourself with the internet for example… That has helped me so very much… I find out about helpful dietary supplements, or ways to add more exercise safely into my life, or just asking questions to try to find out what I should try next… Research is valuable. Aloha
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Hey Adilyn,
Many years ago I came from a small country town in the middle of nowhere. I joke and say “you couldn’t pass wind without everybody knowing” but even with it being a joke it isn’t far from the truth. People talk, Dr’s live and work together and although there is a thing called confidentiality within the medical realm, they do talk. I’ve had neurologists tell me things that I certainly haven’t mentioned to them, but have been said to surgeons. These people talk. I was given a ‘label’ by a dr, that label stuck. Everytime I went to get an opinion I was given a very similar response. It wasn’t until years later after I’d moved to another country altogether that things were investigated. I’d been telling dr’s something wasn’t right for years and years but they all went back to a previous report, I was crazy-in-da-coconut, a hypochondriac. I just couldn’t be having the pains/sensations I was having. Then, I had a dr do a scan “Look what we found…” he says. I was just so F$#@%&G ANGRY, I exploded. I was right and all these damn medical professionals for all those years made out it was all mental and not physical. Now they wonder why I question them, why I don’t just trust them, why my opinion of them is so low. Telling me it is unfair for me to judge them. Their treatment of me was unfair.
When this all came to light, I needed some assistance. I had to ‘reach out’. We have a Community Services Directory, listing agencies that offer differing assistance and services. I started investigating and went from there. There are agencies that can help but they can be difficult to access individually. But often phone counselling services can help give you some direction on what sort of services maybe available in your area or an area you are prepared to travel to. The professional neuro community is small and in some instances tiny. Getting a ‘truly’ independent opinion can often be very near to impossible. But even services outside of the neuro field may be of use. Brain injury has become more and more recognised and understood a bit better than it was 10-20yrs ago. Making contact with a brain injury association in your state may be an option, they too may have contacts for services closer to you. It’s about building a small network to get the services that meet your specific need from what is available. I agree with LeilAloha some hospitals don’t offer such services but utilise every option available to you. Speak to the speech pathologist about options, speak to the physical therapist about options, gain as much info as you can. See what the BI association has nationally too. There are other options.
Merl
Merl,
You have just introduced me to options I didn’t know existed. Thank you. I will try reaching out and finding options for myself. I truly believe that the reason I haven’t done that us I don’t like to be wrong. The doctors have made me second guess myself. It is time for me to be strong and st and up for myself. Thank you soo much this was very helpful.
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Adilyn,
I strongly believe the dr’s making us 2nd guess ourselves is common practise. It’s like “…Don’t blame us. It’s you…” For many years I worked in the disability sector, teaching people with disabilities independent living skills, never imagining I’d be the one in this situation. I have seen this behaviour from the medico’s many times both on my own personal level and as a worker, so believe me when I say ‘you are not the only one’. Part of my role was supporting clients with appointments and the dr’s can be very dismissive to damn right rude. They want you to be questioning yourself because they do not want you to be questioning them. As one dr stated to me “I’m the dr, I’ve done years of university study, so I know, you, you’re just the patient, you wouldn’t know…” Now this is one of the most arrogant statements made to me but it showed me just how disconnected some dr’s can be.
Dr’s are scientists and in science A+B=C and this is a constant, no matter where in the world you go if you repeat a process exactly, you’ll get exactly the same result. BUT no two brains are exactly the same, so 2 people can have the same type of injury but have vastly differing results, this causes a conflict within the scientific mindset. From my experience with neurologists, it’s all theory and theory is always changing. Many years ago the idea used to be that a particular area of the brain controlled certain functions. This theory has changed, now it is thought the different areas of the brain interact with each other to perform functions and not just a single region. Now with an individual having multiple injuries these connections between differing regions must have multiple consequences, so there is no way A+B=C. The idea that neurologists know EVERYTHING is simply wrong. They make out they do, but they don’t. I have seen numerous dr’s/neurologists/surgeons and each one has had a differing opinion. If, for us, A+B=C was true those opinions would all be the same. We have to manage our own situations for ourselves, not the dr’s. Once we get past the idea of dr’s having ALL of the answers we can move on.
Merl
Merl,
How can it be that we, as a patient, all have the same experience with doctors and it is as if they have to prove their superiority? I ask this because my experience with doctors are they are not much concerned with the welfare of me/others unless it contributes to the success of their efforts. It seems to me doctors have to prove their superiority by what and whom they control and dominate. Then the doctor and patient relationship always turns into combativeness and their will has to prevail. However, physicians could show genuine strength in not acting when they could act forcefully against the patient if they chose to do so. This psychological welfare is getting old, so how can we teach them dominion rather than domination? How can we motivate them to listen to us the patient and not be concerned about their own identities, if this is the problem where up against?
Syd,
Having previously worked within a sector which is female dominated I have found that having a degree seems to elevate the person’s self image. I had a fellow female worker tell me that because her qualifications were above mine she had more rights within the work environment than I. My reaction to her statement was to laugh at her. This was not well received. The fact that the degree only recognises scholastic endeavours and not any practical knowledge becomes evident when the answers to a problem are not within the book. And in many cases ‘we’ are not in that book. As I have stated previously A+B=C. I’m not A, my situation is not B and I sure as hell do not equal C. I do not conform to their book. This causes a conflict but rather than admit that the book does not contain ALL the answers, it’s easier to blame the patient.
I have found that the younger the dr or the more qualified they are the higher the arrogance level seems. At one point I had an older PCP who was brilliant, unfortunately he retired. His replacement was beyond rude, beyond self centred and beyond arrogant, to the point that he actually put my life at risk because he knew better than I. I knew something wasn’t right but when I told him this it was a case of “How dare YOU question ME?” When as a result I ended up in Emergency the surgeon was less than impressed, berating me for not coming to see him sooner. But the fact I needed a PCP’s referral to see him made this impossible. I have since changed my PCP, who again is now older, and more open to listening to my concerns and more willing to promptly follow up.
You ask “…how can we teach them dominion rather than domination?” and to be honest I don’t think we can, their superiority complex will trump our personal experiences everytime. People with such paradigms will only take on alternatives when they are given by others whom they consider to be of a superior knowledge base to their own. You and I have no chance. It has to start (and be maintained) all the way through their tertiary education as this is where the building of that ‘chip on their shoulders’ is developed.
For example I have a family member whom I worked with. At the time they were less sure of themselves and more open to other people’s knowledge/experiences. They did some study and obtained a piece of paper. This elevated their self image MASSIVELY (and not in a positive way). They are within the health system and when another family member became gravely unwell, this person tried to takeover. This added even further stress for everybody involved. At one point, towards the end, I pulled the person aside and had words, stern words. Their training was in conflict with the human side and as a former patient it was obvious to me the negative impact their clinical approach was having. As a medical professional this behaviour may have been appropriate to have that professional disconnection, but as a family member it was wrong. This was a conflict that the family member had difficulty in separating, making a very stressful circumstance even more so.
I do not believe that any person, medically qualified, has any reality of what it is truly like being the patient or that they lose that self awareness when they put their “medical professional hat” on. Often for them that disconnection process is normal as they do so daily. Where as for us we do not disconnect because we live it, daily. This family member of mine has been a neuro patient and IMO should know better but still that behaviour continues, which is frustrating, disappointing and damn annoying. But it is near on impossible to re-educate the educated, especially when they know EVERYTHING. (well, at least they think they do.)
Merl
Merl,
Your words are a good observation. Your words appear as insight and able to see the forest for the trees, rather than losing the forest for the trees. In your writing around and about the forest and looking at specific trees you appear mentally alert. It is like your observation of these individual trees is an understanding of the whole forest. It feels like the doctors are cutting down the trees to write their books and their ideas in the books deal less with real life. This arrogance is cutting down our trees and then when the storms causes the mountains to avalanche there is no alternatives for defending ourselves.
This arrogance is increasingly creating a hostile environment. My own body is clasping right now and my mental connections are going haywire, which seems I am reacting to these doctors who have to prove their superiority. This floods me with aggressive impulses and makes me unable to repress the unconscious impulses, which feels like I want to burn the forest down. This burning aggression is this intense involvement in my perceptions and then I become obsessed with defending myself from potential threats from the environment. My mind is falling into the concussion sensation: dazed and dizzy, irritability and disoriented, confusion and feeling this fog.
It seems Merl, as you are expressing, we are not going to change this grandiose idea doctors have about themselves. It feels like these so called professionals protect themselves from fear and guilt by defying these feelings in the same way that they have learned to defy the patient. This destroys my tree and my exploding rage sets fire to the forest. The doctors then shame me for being pissed, though I will not hold myself as shameful for being disabled, now.
This forest and the individual trees is a symbol of my entire psychological orientation. Usually all I see is nothing but confusion. So if we were to take things in whole and perceive patterns, what clarification of mind can we have here? What is the clarification of boundaries here, like seeing through boundaries of rage and shame? What can drop this mind that needs the doctor to understand, when it is clear they cannot? I am asking for a clarification of boundaries, outside of them being an arbitrary invention of my mind, because as you can tell my forest is burnt and no trees is like no consciousness.
Anyway, do what you can Merl and thanks for penetrating the superficial, getting to profound new levels quickly.
Do you have an advocate? From your post I can not tell if you have the cognitive ability left to accurately deal with your doctors and if you do not you need an advocate that can do the communication with your doctors and then be able to explain the situation to you. I understand what you are going through because I am in a similar situation except it is my General Practisioner that lacks the cognitive ablity to see how things are effected my my multiple TBIs because of his lack of education in this specialty neurological field. Since I have the cognitive ability I only see him when I have to and get referals to specialists in the TBI field.
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I have learned in my life that after you reach a point in your “recovery” doctors are less quick to respond to survivors. I am fortunate enough to have my mother for a guardian, a lawyer, and I was injured as a state worker. I have not been capable of personal interaction with medical personnel due to my handicaps, but since I have a history of personal trauma prior to my TBI, I have learned from observation. It’s not right, and is highly insulting, but it is, sadly, the way it is. I’m not criticizing doctors by any means, survivors are not quickly, sometimes never, ready for detailed information about the potential effects of their trauma. Too much information can cause more trauma, so it’s probably taught. Your doctors are not “ignoring” you, they keep records of reports, and use them in your care. It feels demeaning unless you understand. I will seek my own information from other sources when i feel the need, but i have learned that the doctors know what they are doing. Even my guardian is not always completely open.