Our Comments About Our Doctors

[Eillyre]

Dear friends,

For starters, this post is not aimed at anyone in particular or intended to "shut down" conversations -- those of you who previously posted in Sara's topic about Mayo/Dr. Low, please do not feel "targeted", because I'm not doing that. Sara, dear, this one's especially not aimed at you; I'm so sorry that you've had this disappointment concerning Mayo.

Neither is this designed to extol the virtues of Dr. Low and protect his reputation at all cost ; I did find him an excellent and very thorough physician when I saw him (I'm to no end grateful for his help in finding an effective medication for me!) and would confidently recommend him to others, but as I only have an accurate understanding of my own experience with him, in fairness I can't comment on or judge anyone else's. My purpose for sharing this post is that I've noticed something over the last 2 years on the forum that I wanted to mention many times, but never did due to brain fog or lack of energy. This seemed a reasonable moment to rectify that situation.

I certainly sympathize with all of you who have had bad/disappointing experiences at Mayo, Vandy, or any other medical center/office; I have had some of those moments myself (tears have been shed on occasion! ). When we are hurting so much and losing all semblance of "normal" life, coupled with the fact that we have to deal with many people who don't know about our conditions or who have prejudices against them, we have a tendency to become frustrated with the individuals we expect to help us who either do not or cannot (usually doctors/nurses). Not all of my doctors have been as supportive as I needed, and there are most definitely some real whackjobs out there who ought not have a medical license at all.

That said, I have on several occasions during my years on this forum perceived a definite lack of understanding as to the dilemmas/limitations that doctors face as they attempt to treat us; maybe I've seen/heard more of those dilemmas than others because my dad and mom are a doctor and a nurse, respectively. I do not for a moment question that a number of us have experienced some real horrors in medical treatment, nor am I trying to downplay the physical and emotional toll they took or simply be a "little Susie Sunshine". I do, however, wish to encourage fairness in our attitudes/remarks about physicians as a general group and especially regarding those individuals that really deserve more credit that they receive. I encourage you to consider this not only as patients reflecting on our medical care-takers, but also as people thinking about fellow people who are trying to aid us in our plight. For that reason, I'd like to share a couple points that I try to keep in mind when dealing with medical workers.

Point #1: We cannot expect them to have every answer. Doctors are not all-knowing, despite the plethora of scientific advances we've witnessed in the last century. They are human first and medical professionals after. We go to them because they have studied medicine, have built up considerable experience in treating many of our ailments, and over time have discovered some magnificent cures to both serious and trivial problems -- we go to them because they probably will have a better chance of solving our medical problems than we would on our own. Science and medicine are still building their stores of knowledge, however; there is no great vault containing all medical answers that doctors can open whenever they have reached their limits as practitioners (although they would certainly love it if there was! ).

When they are stumped (as all people become at some points in life), please don't get angry at them personally. If they tell you honestly that they don't know what more to do for you, move on to someone else by all means, but please don't disparage them for truthfully acknowledging their limitations. Would you truly want them to experiment on you without clear rationale? Please don't misunderstand me; I'm not advocating the sit-at-home-feeling-miserable route. Each of us needs to be proactive and adventurous in our medical care, especially because dysautonomia is, in many ways, still very "uncharted" and misunderstood. If you hit a dead end with one doctor, I encourage you to find another and work on coming up with more ideas for solutions to your symptoms. If you see an incompetent physician, certainly warn others so we don't meet them either, but please just be careful not to unduly discredit good doctors along with the bad ones in your disappointment or frustration.

Point #2: Doctor's are not superhuman; they only have as much time in each day as the rest of us. Invariably, every good doctor will have to turn some patients away or refer them elsewhere because there simply is not enough time to give everyone quality care who needs it. When I saw Dr. Low the April before last and asked about how many patients he was able to see, he answered that he could unfortunately only see 20% of the patients referred to him -- there simply wasn't enough time to see more. It was not a matter of wanting or not wanting certain individuals; he did his best to help as many patients that he felt he could in the amount of time available. It is the same for many doctors all around the world. When my dad was working in a little hospital in West Africa, people would walk for days to come see the physicians there, waiting in line all day (sometimes for several days). My dad saw more than 100 patients each long, grueling day, but there were always so many more that needed help than there were doctors to provide that aid.

If a doctor cannot fit you in because of time constraints, it is rarely due to laziness. He/she is probably trying to care for many other people who are also in pain, also hoping for a ticket to improvement. If that's the case, go ahead and move on to another physician, but again, try not to take it personally or think of it as a mark of surliness on the doctor's part.

Some of you may be thinking, "Well, this kid hasn't been sick for nearly as long as I have" or "That's fine for you to say now that you've found an effective medication and you're feeling better." True, many of you have more years logged on the POTS timeslip than myself (a little over 2 and 1/2 years) , and yes, I now have little trouble with POTS on medication (though I still am battling --and slowly winning!-- with CFS)... but I don't think that really makes much of a difference in terms of the principles that we're discussing. The issue of fairness to other people would be the same whether I was 10 or 100, male or female, in perfect health or on death's door.

Again this is not all about Dr. Low, nor is it aimed at any particular individual on the forum or meant to protect inept medical professionals from honest, well-intended reports of their misconduct. It's just something I've noticed in the past, so I just thought it would prove a beneficial topic to mention and for each of us to consider carefully.

Best of luck to each of you in this long, hard struggle of ours!

With much love,

Angela

[ksibert676]

xxx

[futurehope]

Eillyre,

I couldn't agree more. But I do think there is a process whereby the chronically ill come to realize that the doctor is not a magician with a magic pill, nor is there a tailored "cure" for everyone.

This takes time and it can get discouraging. Over time, you come to realize that doctors are humans like us and cannot possibly know all there is to know.

On top of that, many are struggling to stay afloat because they do not get paid enough by the insurance companies. Doctors are not working for free. It is a business and it has to pay for their livelihood. And they do need rest and sleep and need to turn patients away sometimes.

But if POTS is your first big experience with a chronic ailment, you have some learning to do about the medical profession in general and their ability to minister to you in particular.

Eillyre, I took no offense and realize what you said was important for everyone to know.

God bless!

[morgan617]

Having had this illness for a very long time, I have run the gamut of emotions regarding care and doctors.

The oldies here know I was a nurse for almost 30 years. Doctors are human. Some are great and some are absolute crud. We used to say, "that cardio should have been a pathologist "(only meaning, he shouldn't be dealing with patients on a personal level)

And you have the other end of the spectrum, where a doctor kills himself and burns out at a very young age, because he/she wants to fix everyone.

You find these people in all walks of life. I think speaking in general terms, it should be okay to say our experience was not especially good for us. But that doesn't mean a person with a different temperament, or at a different stage in their illness won't have a great experience with the same doctor. Sometimes it's just relative.

I was under the impression we weren't suppose to use specific names, except in private emails or whatever. I spoke about being turned down at Vandy, however, as I stated, I wanted to go there for validation, not a cure, as I have researched A LOT on my own. If your expectations are too high, expect to be disappointed.

I have found over the past several years, I can find out a whole lot by doing my own research and talking to a doctor willing to listen, with an open mind. Believe me, in the course of this illness I have had my share of losers. This is really the only place I might disagree with you Angela.

I have the utmost respect for a doctor who will look me in the eye and tell me point blank, they have no idea what's wrong or what to do. I have a complete LACK of respect for any doctor who will put a psych diagnoses out there in my permanent records, before he/she will admit they are stumped. I have found far more doctors doing that, than just saying, "I'm sorry, I just don't know."

I think, many times, herein lies the problem. A majority of us have had to kiss a whole lot of frogs before we found any princes. Some are still kissing frogs and getting more and more discouraged.

To these people, I say, do your research, on this board is more stuff than you can imagine to research, but you have to take the time to do it. Then you take copies to a doctor willing to listen. And then you work with that doctor as best you can. A good doctor will say, I don't get all of this, but I can't argue with what the research shows. They may call you depressed. And they will be right. if you are a normal person dealing with this kind of stuff, it's depressing!

Many of us will never go to the big centers for multiple reasons. Money, too ill, rejected, whatever. So you go online, you look here, you find studies there, you do your own research and you be your own advocate. In the end, most of the big places can give you a definitive diagnoses, but they don't, as a rule follow up, you still end up depending on your local doc to help. So help your doctor help you. My pcp has a 6 inch file of stuff i have taken to him, and he reads it, mulls over it, and we work together to find things that improve the quality of my life.

I expect him to listen, and help as best he can. I, in return, listen to him and never expect him to cure me. If I had very specific names pinned on to me, his treatment wouldn't really change, and I wouldn't expect it to. We assume from my symptoms, I have baroreflex failure. Can I go get a definitive diagnosis from a research center, pay a lot of money I don't have...sure. But we are following the protocals set in the research papers and he hasn't killed me yet. Many will argue that the treatments vary a great deal, but I don't see that. The treatment for hypotensive problems is different than for hypertensive, but that's about it. And you know if you are more hypertensive than hypotensive. And many papers have the recommended treatment for all things. Many of us overlap and have multiple diagnoses, but it still boils down to autonomic dysfunction, a little known and very frustrating illness. It still involves lots of playing with meds, side effects, frustrations. I think of it kind of like a title. A nurse who writes R.N., B.S.N., M.S.,ARNP, PACS etc, is still at the basic end of it an R.N., nor matter how many more initials she's got behind her name. The R.N. is the root of her title.

Each set of initials means something a little different, but at the end of the day, she calls herself a nurse. Every diagnoses you have may mean a little something different, require a little different tweak in meds or procedures, but at the end of the day you have ans dysfunction. Far more more doctors DON'T understand it than do. The really hardworking doctors will try and get as much of it as they can, but because of that hardworking nature, will have less time. The lazy or insecure ones will call you crazy.

Because they are human, for some of them it's about a paycheck and a real nice house, for some of them it's really wanting to help and they don't care where they live. For some it's all about helping and wanting a nice house too. They are just like us. I have met doctors I really despise, but i would despise them just as much if they were a plumber.

We, as people who suffer with this, can offer support to each other, but in the end, it's up to us as individuals, and advocates for ourselves, to do most of the work ourselves. These forums are about support and knowledge. If you've got a good doc, help him. If you don't, find one, and then help him. I don't want to be spoon fed, and neither does my doc, but sometimes spoon feeding him makes a huge difference in how we are working together as a team, and his willingness to listen to me, because I have simply done some of the footwork for him that he doesn't have the time to do. It can make all the difference in the world......wooo....exiting my podium (Please note, no mention of specific docs i don't like, just generalizations) No Harm, no foul....

[Sophia3]

Morgan

I think your pacer is helping. This is the longest post I have EVER seen you write! ( ) Obviously you feel strongly about this as do others of us who have had this for decades.

But I must say again, like the mods have TRIED to do and other persons, if YOU ARE NEW TO THIS ILLNESS, please RESEARCH THIS SITE and previous posts for questions you have.

Frankly, I don't like spoonfeeding anybody their pablum! I don't mind helping out my ANSdoc though and GOD BLESS HIM, he does EMAIL!!

My doc has been a godsend to me but I must say, I APPROACHED HIM about DDAVP because he can't think of everything and that drug has made a huge difference in my life. We have run the gamut of "AND meds du jour to try" and none were effective.

But after years of this stuff also like Morgan, I no longer have the money or energy to travel to look for what I have been told BY MANY INCLUDING DR. GRUBB: finding the cause of my ANS after this many years, is like looking for a needle in the haystack. So I just decided to learn to make bales and move them around as needed, lol.

Somewhere along the line, say after 15 years or so of being disabled, you have to make peace that things will not BE CURED. I did not need Dr. G to tell me that but I knew that.

My current doc and the cardio who confirmed ANS dysfunciton in a TTT all said the same thing "we will try to make you comfortable." But I have to do MY PART as well. Reading about what helps, different foods to eat or avoid, MAKING Myself exercise whethere I want to or not, etc.

I think bad treatments SHOULD be mentioned but I didn't think we could mention docs by name either, though sometimes it may slip out. That's why there is AN EDIT BUTTON and PM. OJ, and a SEARCH button.

I know the whole world wants to see Dr. G. I was supposed to go back for follow up but why? The drive there did me in. My local doc already thought ANS problems the first time he saw me and did a poor man's tilt. That was years ago and my ability to car ride is worse now.

Some may search to the ends of the earth and if you got the money/insurance and energy to do it, more power to you.

The rest of us, accept the progression some of us have with this stuff...grieve another little thing we lose and move on. And are happy for the GOOD DAYS we have...you just have to LEARN to get something out of each day whether its your family, your pets, feeding and watching the birds and the squirrels, the clouds in the sky, etc. Most of all, when you can't change the illness, you can change what's between the ears (thoughts) but that, too, is easier some days then others.

[MightyMouse]

Sophia, I'm cracking up whilst having a flashback moment to Lloyd... isn't that pablum reference a "Lloydism"? Sorry if folks who haven't been in the forum world for less than a few years don't know him, but Lloyd is a person from another forum who could be quite abrupt, and made no excuses for his bluntness. Actually, he and I still write each other from time to time, in case anyone ever wondered how he's doing--he's hanging in there, and busy with other things in his life that make him happy--his wife, his pets, his family.

Comments are okay with names so long as they abide by the rules of the forum (okay, you know I had to do it, so here's the quote):

"You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."

You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed. Please use your own private email to make statements that name particular doctors or hospitals and are defamatory in nature."

So, based on these rules, there is nothing wrong with saying something like "Dr. Whoever turned me down for an appointment and/or practice is too full/too busy to accept me as a patient", or "The Best Hospital couldn't find any other treatments to help me other than what I'm already doing". However, negative statements are not permitted--a negative statement would be something like "Dr. House spoke to me in a condescending manner and treated me like I was faking my illness."

Why? Because your even if your statement is true it STILL may fall under the "defamation" term listed above and may leave you open to a lawsuit if a doctor feels your public statement damaged his/her practice in any way. Hence, to protect you from such suits, and to protect DINET so that we can still be here in the future for patients like you, we ask that you simply follow the rules Michelle has so carefully worked on...and we have tweaked over the years to address the specific needs of our community.

Okay, lecture over... promise. As always, adhering to common sense and kindness/compassion usually will keep you well within the rules.

Nina

[Sophia3]

Nina

Yes! I AM SO BUSTED! That 'pablum' comment was a Lloydism I got in email years ago.

Thanks for the shared flashback.

Now back to our program.