Trust...

[firewatcher]

I learned mistrust at an early age when someone said "Jump! I'll catch you!" and didn't. Overall, before "all this" happened, I trusted people in general: teachers, elders, friends, doctors. If they had more education than I did, I figured they knew what they were talking about. I still trusted certain "professionals" up until November of 2007 when I had my biggest POTS crash. Since then, I have become far more cynical and trust far fewer people, particularly doctors. Is this the case for anyone else? Has your road to recovery or diagnosis caused you to lose trust? Have we lost that much because of illness?

[Guest tearose]

I've been so burned, violated and bruised it would be wrong to trust first anymore. Now, doctors have to earn my trust. I truly believe I would have been dead by now or misdiagnosed had I not looked until I found a trustworthy doctor. From the dx of needing a pacemaker to being a stressed suburban mom to whatever the stupidest dx were... The lack of integrity and the big egos of misinformed so called professionals no longer surprises me. I just do more homework now before I see one and even if I start with one, if the relationship does not develop ethically or accurately I will move on.

From my reflections on the early days of trying to get a dx...

I never felt anxious or stressed and kept insisting my heart was taking off on its own and my brain would freeze while I was speaking and I was active and yet would faint....it took many doctors before someone finally listened and began doing the right testing.

I have a whole lot of trust and experience with Mayo even though there were a couple of lemons there, 98% were top notch!! If ever I needed to trust I would be in good hands for a major surgery or diagnosis I would go back out there!

I do use local docs for the general maintenance things now.

[heathmcev]

More than anything I've learned to trust *myself* through this process. Before getting all the dx's I have now, I always had a gnawing feeling that there was more happening -- things that hadn't been figured out. But it's also so easy to hear everyone saying "it's always something with you!" and believe it. Since the Drs have proven that it's not all in my head I have become totally trusting of my own instincts!!

[arizona girl]

Interesting that you bring this up now! My cardio who is really a PA, but a very smart one, recently said to me "You are dealing with a lot of post traumatic stress, because of what the medical industry has put you through." Considering I had one primary doc say to me "Are you one of those people that looks things up on the internet, but there is nothing really wrong with you.", a few months later my colon ruptured, even though I had told her symptoms she should have recognized as infection. Then the icing on the cake was to have the ep cardio that did my tilt table take criminal liberties with me during the exam. He victimized so many women, when the justice system is done with him, and he is convicted or pleads, they are going to require he give up his medical license. The truth is that though I do believe my current cardio has my best interest, and who also worked with this guy and turned him into the medical board, I will probably always read my own labs and doctors notes and question her and do my own research to make sure I get the best care I can. I don't see how I can ever just leave it in their hands anymore.

My concern is that his license won't be revoked and he will some how get it back, because the medical boards do so little to police the doctors they oversee. He is a symptom of a greater problem. I recently googled "when medical boards fail to protect", there are so many stories out there on the web, where this has happened. The failures of oversight are so great it may very well be criminal negligence. Sometimes god drops your purpose in your lap. It has been made very clear to me that at least in the US, we are blissfully ignorant in our belief that there are adequate protections in place for patient safety.

In 2008, Public Citizen in DC did a study on how effective the National Practioners Data Base was. It had been created to help bring down malpractice claims and have a more effective national data base that state medical boards can check doctors against. Now fifteen years after it's creation the report showed it is basically an empty shell as only 5% of hospitals are peer reporting inadequate doctors. It showed that there is basically a conflict of interest with the hospitals reporting doctors, as those doctors are directly responsible for bringing patients to the hospitals and therefore bring in revenue. I realized recently that much of the time we patients are actually revenue sources. When it's good for the bottom line and our procedures can be billed to insurance, we are more likely to be given the opportunity, whether it is the best treatment course for us or not. Of course, if it's hard to get it through insurance, we are less likely to get a treatment that might truly help.

There is story after story here on our forum of how many of us of experienced this truth ourselves. Myself and some of the other victims are working on figuring out what went wrong with our medical board, the guy had six complaints. We know for sure there needs to be more transparency, so patients can make informed choices when selecting a doctor. Patty Skolnik in colorado, who's son was killed by a negligent surgeon succeeded in getting their medical board to make huge changes in the direction of patient safety. If you take a look at what's now on their medical board you will see what I mean. Mostly, these changes are going to be directed at preventing physical harm to patients, but we here know also the emotional distress and heartache we have had to endure trying to figure out why we are sick. It has taken so many of us years and years to finally be vindicated. While vindication is such a relief and sweet, trusting again well that's another story, isn't it?

We are a resourceful group here maybe some day soon we can come together to make a difference.

[vemee]

No, I do not trust the medical community; they have to earn it. I have been harmed and almost died from their egotistical misdiagnostic shenanigans and I would prefer not to see any of them and just let nature take its course. This is an unfortunate attitude that has developed from seeing the true side of the medical profession and I do not like having this attitude because it lumps the good doctors, who do exist, in with the bad and makes me rely on my own medical knowledge and research which is inadequate. Doctors do work long hours and deserve the money they make but I question their deserving the godlike aura of genius that goes along with their title. I realize that if we did not have doctors we would not know anything about the condition we have and we would be worse off and I feel guilty for my opinion. Presently I am going to doctors that I am learning to trust, but it has taken time for me to start to feel like I am not wasting my time. I still have to deal with the post traumatic distress from one incident where I had a reaction to a drug and was misdiagnosed as bipolar by a doctor who had never seen me and never examined me before medicating me.

[kayjay]

I had the worst time with a doctor at Johns Hopkins who could NEVER be wrong, a doctor at NIH who only spoke to my husband and treated me as a "non-person"...And the nurses at our local ER. The only time I know my husband wanted to hit people (those know-it-all nurses who kept telling me to calm down!).

I think in any profession ( I was a teacher) you will do your best if you 1) treat people with respect!! 2) always try to keep learning yourself. 3) don't pre-judge- that is a foolish yet human thing to do!

I think many of us have felt victimized by other people's snap judgements.

I am less judgmental and I also trust God more... really who else can you trust? ?

I know someday I am going to die... I try not to think about that... I am just trying to have the highest quality of life I can.

My doctor now will try to "do me no harm" and he is trying to help me in any way he can. I was supposed to see him yesterday... he emailed me to let me know he would be rushed did I want to come in Thursday instead?- THAT is a good doctor! I don't expect him to have all the answers and he doesn't pretend to but he is looking out for my interests and he cares about his patients ( also he is super smart ) Do I sound like I'm in love ?

[TXPOTS]

Thank you for bringing up this issue. It's comforting to read I am not the only one going through a post traumatic type period after being misdiagnosed for so long. Unfortunately, I was misdiagnosed with a spontaneous spinal leak and endured too many myelograms, brain MRIs, and over 30 blood patches. I was over exposed to radiation and needed a spinal steroid shot to counter serious nerve pain after all these useless procedures. It is very disturbing and traumatic to relive. Like many of you, doctors must earn my trust now. I question everything and will not blindly partake in treatments or diagnostic testing without concrete evidence or suitable explanations. It's disgusting to see how many useless procedures I endured and how many health care dollars were given to doctors who were either way off on their diagnosis or really could have cared less about my well being. No disrespect to the great physicians out there trying to make a difference. In fact, my younger sister, uncle, and aunt are all physicians who practice out of my home state. The worst is being degraded and disrespected when you feel so ill and vulnerable.

[Griffin]

This is a really interesting topic.

I have never thought doctors have all the answers. A diagnosis of CFS.ME is a cop out in my book. No treatment just a "you will get better" - hardly scientific.

My heart rate has been found to be high many times over the years, including a hospital admission for it. Yet I had to badger the doctors for any of them to take it seriously and in the end it took two referrals as the first heart specialist dismissed it and I demanded a second opinion. What was finally diagnosed as quite severe inappropriate tachycardia would never have been treated if it had been left to the doctors. I feel very angry about it. After all, it is quite specific and hardly difficult to diagnose.

[rach73]

Hi,

although I am yet to recieve a diagnosis I hope its ok for me to add some of my personal experiences. It seems quite apt this should come up today having been discharged from my neurologist as theres nothing wrong with me!

The medical profession and my family has never been a good mix, saying that I have friends who are Drs but not involved in my care.

When I was 2 and a half I suffered an intussception (intestine telescopes back on itself) because I was "too old" (normally occurs in children under two) for this condition although displaying classic signs (faeces coming out like cranberry jelly), horrific stomach pain, my mother was told she was neurotic and the family gp would not refer me. Eventually I got a referal after my father spoke to the Dr. By the time I was operated on the chance of my survival was less than 50%. We were then barred from the GP's surgery and black listed locally.

For the next 20 years I suffered with stomach pain. In 1998 it got so bad I could barely eat or drink. I was told I had irritable bowel syndrome. I collapsed later that year with a small bowel obstruction, due to bowel adhesions caused by the original operation. At the moment I am suffering from intermittent stomach pains that feel exactly like the bowel adhesions did in 1998, they start as soon as I eat or drink. That's being ignored as I am considered a problem patient - too demanding because I actually want to know what's wrong with me and won't be fobbed off.

Last year I asked for my medical notes from the NHS. They were full of inaccuracies - I suffer with right sided facial weakness and ptosis. It was described as left sided. It also had complete lies in there and comments that I am attention seeking. They also made comments about my mother and how we are a family of malingeres. All without having my mothers or sisters medical notes or ever actually meeting them.

So no I don't trust the medical profession, all too often they are nice to your face and then put absolute rubbish in your notes. Maybe Ive just been really unlucky, but I now get very panicky if I have to go to medical appointments or stay in hospital.

Rach

[firewatcher]

One of the biggest beefs that I have about the medical community actually has more to do with their portrayal in the media. TV shows like House, ER and all the other doctor shows NEVER show the doctor doing research! It is always some great epiphany from a higher intellect that "cracks the case" and saves the patient. It feeds the misconception that doctors know best and are infallible. It also pumps up the egos of the doctors who DO actually play God every day. They should have egos if they are right most of the time and are helping their patients, but there MUST be an understanding that no one knows everything! Most of my current doctors are extremely humble (especially if they are still paying off student loans!) One of them, I am beginning to consider a Saint. One is an egomaniac, BUT he has been the most correct and when it really counted, he cleared all his other patients and took over an hour to explain that there was something physically wrong with me and what he thought it was. My primary is my "curb," he is the one I take articles to and discuss symptoms and options. He doesn't claim to be an expert or that he knows much about dysautonomia, but he encourages me to look and ask questions and then we decide together if it would be good for me.

As for people in general, I trust less. I've had good friends let me down and an ex-husband that nearly killed me. Being faceless, like on the forum, allows me to express myself more freely. I do know though, that the internet is a dangerous place with lots of information and misinformation and once you post anything it is there FOREVER!

[vemee]

Another problem is that medicine is business and not charity. Doctors usually are working for a group and are under a great deal of pressure to see as many patient's as possible in one day. Some places even cut the doctor's salary if they do not meet their quota for "production". This means that a doctor would rather spend time with three easy fixes than with one patient who takes up 30 minutes of their time. Specialists who get paid more per patient can be more flexible with the time they spend with patients. With reimbursements from medicare being reduced ( the insurance companies will probably follow medicare )the pressure to see more patient's will increase or the doctor will expect the patients to pay his full fee and have the patients try to get reimbursed from the insurance companies. Some doctors do pick and choose their patients and will try to discourage the undesirables from coming in to see them. Motives are not always pure. This is stuff I have learned from personal experience and from knowing people who work in doctor offices. Yet there are doctors who care and we should value them.

[TXPOTS]

My endocrinologist is so refreshing because she actually will say.... I don't know when she doesn't have the answer. I wish more doctors were like this. It's ok not to know everything. After all, how can they? She doesn't know why I have POTS, why I have low aldosterone, renin, this odd ball partial diabetes insipidus, but she is willing to work with me and do what she can to learn and try to improve my quality of life within the realm of her expertise as an endocrinologist. I think she is the only doctor I fully trust right now, but I do hope this changes.

[hensor]

I kinda trusted Drs initially. They told me I was fine from teh age of about 3 and, against all odds, I believed that everyone experienced what I did and managed to get along until I was about 22, when EDS went obviously pear shaped, quickly followed by PoTS symptoms. then I started to question the 'nothing' diagnosis. I knew I wasn't insane.

Like someone earlier posted, I learnt to trust myself. Because I can be very honest with myself and logical and get underneath any prejudices so they don't cloud my view. I have full 24hr access to my symptoms information - no dr has that, and therefore, now I haev been diagnosed with EDS and PoTS I am in the best position to decide what I need. I will ask medical professionals for their opinion, but ultimately it is my opinion that goes.

Perhaps this is arrogant, but 24 years of 'you are fine' and slowly going down hill, and wrong treatment etc. means I now am much more comfortable, and I think well balanced, by treating Drs as human beings who are knowledgable in the areas they know alot about, but not all-knowing.

Will stop waffling now, cos my brain is falling out my toes.

[Rachel]

I wouldn't say that I have lost trust. I would say that I have learned to be careful, and I have learned where it is safe to place my trust. I have become wiser, and that's a good thing. It hasn't been an easy road, but I have gained a lot from it.

At the beginning of the journey to find POTS I believed each diagnosis the doctors gave me, but soon learned that the doctors don't understand everything about every illness. I have learned to do some of my own reading and research, and I have learned to be my own advocate.

Learning to not trust every doctor has been beneficial for me. Learning where I can place my trust has been invaluable as well. So I wouldn't say I've lost anything, actually. I've gained much more.

Rachel

[ramakentesh]

I always assumed that doctors knew their stuff and I was horribly wrong in the long run.

Its no longer even a question of trust - its more an expectation that they will spin me a ling of 'fact' that is based on usually only partially informed opinion.

[tilly]

This is a really interesting topic.

I have never thought doctors have all the answers. A diagnosis of CFS.ME is a cop out in my book. No treatment just a "you will get better" - hardly scientific.

My heart rate has been found to be high many times over the years, including a hospital admission for it. Yet I had to badger the doctors for any of them to take it seriously and in the end it took two referrals as the first heart specialist dismissed it and I demanded a second opinion. What was finally diagnosed as quite severe inappropriate tachycardia would never have been treated if it had been left to the doctors. I feel very angry about it. After all, it is quite specific and hardly difficult to diagnose.

Hi Giffin .. i have just watched an interesting podcast with a Dr Gary Murrey ... google and listen to him he does make sence .. google "Dr Gary Murry ansa testing" ....

i used to think i was being neglected by my doctors and hospital, but with all the facts and information i have gathered along my trail to get a diagnoses, and the information provided from fellow members .. i think my care teams have been very good and open minded when dealing with me ... they have been willing to learn about autonomic problems, but sadly, i was shocked to discover they do not know everything, i asumed i would be cured when i fell ill, there is definitly not enough knowledge or support out there in the medical circles ... i think there may be more understanding one day ....

[Christy_D]

While we were searching for my sons diagnosis, I completely trusted doctors. They were supposed to be so smart. Each time they told me they had it figured out, I was like finally-Yeah. But each time turned out wrong. Then when they couldn't figure it out, "Well he has anxiety or he is depressed or he just doesn't want to go to school." That is when all faith in doctors went out the window. They wouldn't listen to me, I figured I knew him better than they did.

One neurologist told me after my son was diagnosed that I probably knew more about it than he did. I respected him for his honesty. He was willing to help me find the doctors to help us.

As for our new doctors that are treating my son, I think they are great. They are caring, they listen and have compassion. I don't necessarily think they know everything-since nobody does-but they are very knowledgeable and are not close minded.

[sugartwin]

After the way my doctors have treated me, I'd be stupid to give them my unquestioning trust. I can barely manage to dredge up basic respect for them. It's hard not to tar them all with the same brush. Such horrible things have happened because they didn't trust me. They never took my complaints seriously, attributing them to mental illness and then to malingering and drug-seeking. They yelled at me, insulted me, refused to lend their help when I needed it most.

After the first nine days that I spent in the hospital, I told a friend that if I didn't need someone to write my prescriptions I would never go see a doctor again in life. I still do feel that way.

[erickamcc0523]

If it weren't for the fact that I have Barrett's esophagus along with everything else, I would never go to a GI again. In my experience, they are usually the ones that if nothing is easily forthcoming on the smaller tests (aka, ultra sound, CT scan), they don't bother with the fancy tests (like a HIDA scan or a gastric emptying study). Because of at least 3 horrible GI's (I'm only counting the "it's psychosomatic" ones with that... then there were others who just scratched their head when I told them I'd been in and out of ER's constantly for IV phenergan and morphine from all of the stomach pain and vomiting and didn't try to think of a solution), I would have never gone back to one, if I hadn't been almost incapacitated by severe heartburn (like, actually throwing up just stomach acid bad) and more stomach pains, I wouldn't have sought out another one. I think God had great mercy on me, because this is the same GI doctor who recommended that I undergo a HIDA scan after my last severe gallbladder attack. Since I was in the hospital on alot of morphine and in so much pain still, I didn't remember her, but she remembered me (or at least found my old chart). My cardiologist is wonderful, and the nurse practitioner at the back and neck pain clinic is simply great. My attitude towards them before I actually saw them was just terrible. "This will be a waste of time, they're going to call me crazy, they're the crazy incompetent fools!"... etc. I'm glad that they have been able to earn my respect and at least some of my trust. Experience has told me that everyone drops the ball at least occasionally, so I haven't given my explicit trust to them, but I'm less likely to convene the Spanish Inquisition to meet with them.

I guess with a somewhat growing trust in the medical profession again (I know there are good doctors out there, I just have to be patient and persistent to find them), I find it ironic that now that they are doing their job (I've racked up 4 new diagnoses so far this year! And after my own research, I agree with them), I am starting to not like them again. It took 5 years for them to figure out gallbladder issues, but now it seems that every new appointment, there is something else that is wrong, something else I need to learn how to live with, and I suppose that it's just somewhat overwhelming at times. My cardiologist and my NP both take the time at every appointment to ask me how I'm doing, not just my dx's, but just coping with life in general. And they don't rush when listening to the answer. And if I've had a rough time, they offer encouragement and occasionally helpful advise (like taking a break from reading about everything, as it was overwhelming me the most).

Like others have posted with this thread, I have learned to trust my own instincts. They were right when my gallbladder shut down, they were right about the POTS, EDS... basically, I researched it before hand, and these medical professionals have just confirmed it, written it down on paper for insurance purposes, and have affirmed my own knowledge and intelligence.

I have to say that when I went to see my cardiologist for the first time, I already knew that I had POTS, so to prepare for the appointment, I printed off some information here at DINET, and I think Vanderbilt's website... I didn't get a chance to use them, except to show my doctor why I was laughing so hard at such a serious diagnosis. And he was happy that I had done my own research, even if he did admit it can cause some problems.

So, to sum up, I trust them less, I trust myself more, and I'm very grateful for the good doctors I have. I hope everyone has cloned versions of my doctors on their medical team.