Interesting Letter from a Doctor to Patients with Chronic Disease

I did appreciate my reading of that post from Dr. Rob.
The title explain the idea. Here is the link:
http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

THANK you so much
this helps alot

all of it is SOOOOO true.

we even had ER/urgent care docs tell us they were afraid of DS
and we were only there for a throat swab for strep:lol2:

Thanks for posting PsychoJane and thanks for copying to the Parent's forum mlp. :thumleft:

Dusty.

Great letter, and the comments are really interesting to read. Thanks for the post!

Thanks for that, definitely an interesting read!

Thanks for that Really interesting to get perspective from the other side of the surgery desk.

I've seen studies that show likeable/more attractive patients are given better care, but I hate sucking up to doctors. I don't even like the fact that they are called Doctors. I believe it's a throwback from when doctors were probably the only educated person in their village...

I talk to doctors with the same respect that I talk to the homeless people I give a few dollars too...and everyone else.

Doctors who get their nose out of joint because I'm on edge, because I'm worried about my kid just need to grow up and realize it's just another day at the office for them, but for me it could be the end of the world. NO comparison!

Doctors need to overlook less than stellar attitudes from their patients who are ill or worried about someone who is, and to their credit, many do.

In other words, I'm here to make you all look good.

I wish all doctors were as insightful, honest and upfront as this guy. He understands his flaws but he seeks to improve his care.

PsychoJane said:

I did appreciate my reading of that post from Dr. Rob.
The title explain the idea. Here is the link:
http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

Click to expand...

Really good and nice to see his side of things!:thumleft:

I don’t quite understand the point he’s actually making. We (chronic illness patients) scare doctors because they're often powerless to treat us, but we should accept that this makes them frustrated with us?

Also he points out in one of the follow up entries he links to at the end that doctors are human with lives outside of being doctors. One of the biggest problems I've encountered is that doctors don't take into account that patients also have lives they're trying to live as normally as possible. You can find many posts on this forum, especially amongst the undiagnosed, where patients are being dismissed by doctors because their test results are normal. Many doctors don't consider that symptoms still affect quality of life regardless of whether patients' test results indicate a severe level of disease. They treat the disease, they don't take into account that there's a person as well as a disease.

I guess I've just never really felt that the majority of doctors take patients' lives into account at all. And while this doctor may be very different from the doctors I've encountered, it's been quite obvious to me that doctors are scared by patients whose illnesses they don't understand or can't treat - and that they usually react with anger in ways that are unnecessary and inappropriate.

I gotta say, I have been sick for 10 years now with many health issues. I have seen SOOO many doctors, and specialists, too many actually. I will say that I really do not think doctors are "scared" of a person with chronic illness. I think it is more of, they do not want to deal with it! They would really rather much just be able to have everything in black and white and write a script and see you again in a couple months. They like things easy peasy, no bumps. I cannot even tell you how many times I was diagnosed with a disease that I DO NOT even have. I mean some doctors will just tell you anything, I mean I think honestly it is all about ego a lot of times. Doctors, or should I say a majority of the doctors( at least the ones I have seen) do NOT like to admit when they just do not know something. I have seen well over 60 doctors since getting sick and I mean different specialists. I will say that out of all of them, I can actually only count on 1 hand the ones that were actually "good" honest doctors that had my best interest at heart unfortunately.

I am undiagnosed if you will at the moment. Or should I say I am being told I have IBS since the tests I have had have not found anything. Don't get me wrong, I am happy nothing bad was found. But I am still suffering. I feel that doctors do like to push people off often times. They do not seem to get that having a painful chronic illness effects the quality of life greatly in most people with debilitating chronic illnesses. I mean one example is that I remember seeing a specialist about my IC bladder. Anyone that knows anything about this debilitating painful disease knows that it is an unbearable disease for most who have it. Dr. Kevorkian's last suicide patient was an IC patient. Well back to what I was saying, I saw a specialist who actually told me that Yes, IC is very painful and it is hell and that I will probably Not have a good quality of life, but that I just have to live with it and accept it. He then told me that they do not like to ever give pain meds to IC patients because they would have to be on them for life and they would become addicts! He said all I had to do was go to relaxation classes and do other stuff to take my mind off the pain!!! Ummm, really?? First this doctor was a male and obviously probably never even suffered from a typical bladder infection let alone IC! I mean he had NO clue about anything about how awful this disease is to live with. I mean unfortunately a lot of doctors are like this though, especially when it comes to chronic illness. So, No I do not think doctors get scared when they see us. No, I would say it is more of a " oh ****, I do not have time to deal with this, I will just pawn this person off to someone else to deal with". I have been there so many times. Doctors want uncomplicated patients. They want to be able to just write a script and send you on your way. It is sad to say, but in these days and times doctors are no longer going into medicine to help people. It is all about the money.

I have yet to have had a doctor to go out of his or her way to research anything. I mean I have been my own advocate as far as my health is concerned. I have had to be the one to do all the research and have had to actually ask for certain tests and such based on all my issues. I have had to look up meds and different treatments so I could relay them to my doctors. If not for all my own work, I would be left out in the dust! It is sad when the patient has to do the doctors job!

Ok, I am done ranting . But it is true. I know many of you can relate....

but in these days and times doctors are no longer going into medicine to help people. It is all about the money.

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On that part, I'll admit this in itself brings issues. I do believe that "social" system shows less chances of encountering situation such as the ones you mentioned Ihurt. This is not something that can be changed or changed easily. It is social choices and take decades to move on. I believe that places like France where the health specialists are not paid insane amount of money provides better professionals. Actually, US as the ability to form better specialists from technologies and resources I'd assume but then, the humanist part might be lessen because many must be wearing doctor shoes because they are paid a lot and not only because they care a lot. If the wage does not greatly differ between a teacher and a doctor or else, your are more likely to do it for the real reason I think. Anyway, I say this, but I've never been treated in the USA. Here, I have to say I was generally lucky and found specialists that have proven me they had compassion and empathy and were working towards finding solution for my greater good. I've been a puzzle back in the day, I've made them frown and wonder wtf was going on but I've seen them work and try. I've seen a doctor almost cry because she could not figure out what was the reaction that I was suddenly having(I had been under her care for about 3 months at the hospital). Yes I believe they can be afraid of us because we do reach the limits of their knowledge at time... Just as much as getting a name on a disease does not mean you will have answers on everything.

I've also encountered ******* specialists that I would have voluntarily insulted or slapped in the face because to me they forgot I was not a truck or some kind of object. Needless to say, they did not remain my specialist. But on the overall, I found specialists from which I acknowledge the knowledge and trust their practice. We work together and yes, I'll agree that I have at times needed to bring them informations to treat me the way I assumed was the best way to treat me. Yet I agree they should be the ones doing this but they are not at the proof of the paradigm effects and they fall for it. I guess we all remain humans through this, we are just unlucky and stuck in the wrong seat if I may say.

Thank you for that post.
Doctors do follow a certain protocol and try to help us/our family the best that they can. They are limited by what is FDA approved.

I believe in three things: listening to what the doctors advise, researching all that you can yourself and most importantly prayer.

I hope I can find that letter down the road when i go to tell someone about it

Yes, you probably have a good point there. I mean here in the States the doctors charge insane amounts of money for their services. I mean I have insurance, but a lot of times the insurance company wont pay for everything and a lot of times I end up with a large bill. I am under Blue Cross insurance and also am under a disability. Well my Blue cross only covered like $375 dollars of the test and the disability was suppose to pick up the rest. well I got a letter in the mail from the Medicare saying that they reviewed my case and decided the test was NOT necessary! So I had to call my doctors office back and have them try and convince the Medicare that it WAS necessary. I mean it just gets to be a joke after awhile.

Here you have to really think before you have these tests done. I mean they cost sooo much. My husband was having issues and found out that he has kidney stones. Well the kidney doctor said he needed to have a 24 hour urine collection we he pees in a jug over 24 hours and we bring it to the lab and they test it for special stuff,and blood work to look further into it. Well we had no choice, I mean we had to see what was going on. Well we get a letter in the mail from the hospital saying that the insurance will only cover a small portion,So we may have to pay $ 600 for that. He also had a thyroid ultrasound ( doctor felt a lump in the thyroid and since his mother has a history of thyroid issues and surgeries we had to check it out). Well we got a bill for that and the insurance is only paying a small part so we will be billed for over $600 to $700 for that! It just never ends. I seems it is getting worse and insurance companies are not paying up like they use to. Not sure what has changed but I have talked to other people who are experiencing the same thing here. I think it is because the hospitals and doctors here in the States charge such high prices. I mean not sure about over there, but here an MRI or MRE of the small bowel( which I had done last year) will cost you about $ 6000. Unreal isn't it??

PsychoJane said:

On that part, I'll admit this in itself brings issues. I do believe that "social" system shows less chances of encountering situation such as the ones you mentioned Ihurt. This is not something that can be changed or changed easily. It is social choices and take decades to move on. I believe that places like France where the health specialists are not paid insane amount of money provides better professionals. Actually, US as the ability to form better specialists from technologies and resources I'd assume but then, the humanist part might be lessen because many must be wearing doctor shoes because they are paid a lot and not only because they care a lot. If the wage does not greatly differ between a teacher and a doctor or else, your are more likely to do it for the real reason I think. Anyway, I say this, but I've never been treated in the USA. Here, I have to say I was generally lucky and found specialists that have proven me they had compassion and empathy and were working towards finding solution for my greater good. I've been a puzzle back in the day, I've made them frown and wonder wtf was going on but I've seen them work and try. I've seen a doctor almost cry because she could not figure out what was the reaction that I was suddenly having(I had been under her care for about 3 months at the hospital). Yes I believe they can be afraid of us because we do reach the limits of their knowledge at time... Just as much as getting a name on a disease does not mean you will have answers on everything.

I've also encountered ******* specialists that I would have voluntarily insulted or slapped in the face because to me they forgot I was not a truck or some kind of object. Needless to say, they did not remain my specialist. But on the overall, I found specialists from which I acknowledge the knowledge and trust their practice. We work together and yes, I'll agree that I have at times needed to bring them informations to treat me the way I assumed was the best way to treat me. Yet I agree they should be the ones doing this but they are not at the proof of the paradigm effects and they fall for it. I guess we all remain humans through this, we are just unlucky and stuck in the wrong seat if I may say.

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I mean not sure about over there, but here an MRI or MRE of the small bowel( which I had done last year) will cost you about $ 6000. Unreal isn't it??

Click to expand...

I have to agree this is pretty insane. I have to say I was dreading the idea of being sick while I was in the USA or should I say was dreading the idea of living there full time because I could not figure how good it could be on someone to have to deal with the stress of never really knowing how to cope with the fees of medical services if medicare was not picking them up (my ex was trying to tell me it would be ok with medicare in the worst case scenario...). Anyway, I don't know if the prices I have here in the private are only for Quebecers, cause public system let you have these exams for free (welllll for 25-50% taxation on your annual salary lol) but private would be around a 700-1000$ for MRI. This allows to cut back on the waiting list which can be relatively long otherwise.

I don't have a great opinion of doctors in general and they've earned that opinion. I was lied to just like in the movie Knocked Up. I chose my GYN because he agreed to be there when I delivered. When we made the call to say that we were on our way to the hospital, he told me that he was going hunting with his father! I said, "But you promised you would be there..." He said, "I know, but my father is getting older..." My husband and I were in shock when we had to have a doctor we'd met once, months earlier, deliver our first son.

Doctors' #1 concern is being sued. So, they often order an insane numbers of tests
and don't concern themselves with how expensive or painful they might be.

One scared us into letting him do a spinal tap on our then toddler son and when the results came back negative for meningitis, he wanted to take a plug of flesh from his thigh. When my husband refused, he basically said, "You are going to be sorry!"

Thankfully, my husband was correct and we didn't have to be sorry. But, it was scary to go against his advice, even as unwarrented as it seemed. He was the doctor!

I've learned to be skeptical. I no longer assume a doctor has my or my child's best interest at heart, although many do. I go into every medical situation feeling like I have to be a backseat driver, which is stressful and exhausting.

My daughter, the RN said she doesn't have time to be as caring with her patients as she'd like to be because she has to do so many ridiculous procedural things to "cover her own ass".

The system is broken.

Oh I can so relate to everything you are saying! When I go to a new doctor for the first time I go in there with my guard up. I have been screwed over so many times I do Not trust any of them. I mean for me, they have to prove themselves to me and earn my respect and trust. Sadly, it seldom happens. I still remember when My son was a little over a year old he got very sick with pneumonia and was also diagnosed with severe asthma at that point. He was in the ICU for 3 days. Well after being discharged from the hospital, later as I was changing his diaper I was shocked to see his diaper was FULL of blood! I of course rushed him back to the hospital. I did some research on it and found that if a child is given an overdose of prednisone it could cause severe intestinal bleeding, especially in children! Well I broached the subject with the doctor there and he flew off the handle and started yelling at me saying I should Not be interfering that I should stand back and let them do their job!!!! I am not kidding, that is what he said to me. At that moment I went and got a hold of my sons pediatrician at the time and told her what happened. She got all over this doctor at the hospital for being so rude to me. Well, long story short, it was found that they did indeed give my son too much prednisone! Luckily he was ok after a couple days. But It just goes to show you that you have to be on the ball at all times. You have to be your own advocate and NEVER put complete trust in any doctor! I mean yes, there are some good ones out there, but then again there are some very bad ones.

I mean and it's not just a freak incident. I cannot even tell you how many incompetent doctors I have run into since being sick. My mother passed away of secondary liver cancer 11 years ago this August. When she was diagnosed they told us we had to have all these tests so they could find out where the cancer was coming from. We were under the impression that if they found where the cancer started they could help her. Well at the time I was kind of blind and trusting and trusted these doctors. Well after putting my poor mom through all these tests ( some very painful and uncomfortable), the doctor comes back and says , well, we did not really find anything too useful in the tests, but it really does not matter since your mom does have 4th stage cancer anyhow!! This A** hole knew all along that there was no hope for my mom! Boy, my dad was pissed and so was the whole family! I mean after my mom walked out on the doctor, we talked to a nurse and asked her why on gods earth would they put my mom through all these tests If they already knew there was no hope. I can still remember the nurse( she was very nice), looking at me with compassion and holding up the money sign! She said they order these tests in order to make money for the hospital!! Well that was when my mindset changed drastically in regards to how I feel about the medical care system here. Then I got sick and Oh God it has been hell. Sorry for rambling on, I just get so mad and riled up over these things.. I cannot believe they actually happen to people!!

Amy2 said:

I don't have a great opinion of doctors in general and they've earned that opinion. I was lied to just like in the movie Knocked Up. I chose my GYN because he agreed to be there when I delivered. When we made the call to say that we were on our way to the hospital, he told me that he was going hunting with his father! I said, "But you promised you would be there..." He said, "I know, but my father is getting older..." My husband and I were in shock when we had to have a doctor we'd met once, months earlier, deliver our first son.

Doctors' #1 concern is being sued. So, they often order an insane numbers of tests
and don't concern themselves with how expensive or painful they might be.

One scared us into letting him do a spinal tap on our then toddler son and when the results came back negative for meningitis, he wanted to take a plug of flesh from his thigh. When my husband refused, he basically said, "You are going to be sorry!"

Thankfully, my husband was correct and we didn't have to be sorry. But, it was scary to go against his advice, even as unwarrented as it seemed. He was the doctor!

I've learned to be skeptical. I no longer assume a doctor has my or my child's best interest at heart, although many do. I go into every medical situation feeling like I have to be a backseat driver, which is stressful and exhausting.

My daughter, the RN said she doesn't have time to be as caring with her patients as she'd like to be because she has to do so many ridiculous procedural things to "cover her own ass".

The system is broken.

Click to expand...