Understanding the Doctor's Perspective: Advice for Patients

Dear patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can't understand what your lives are like. How do you answer the question, how do you feel? when you've forgotten what normal feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won't let you forget about your frailty, your limits, your mortality?

I can't imagine.

But I do bring something to the table that you may not know. I do have information that you can't really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won't undo your pain, make your fatigue go away, or lift your emotions, it will help you. It's information without which you bring yourself more pain than you need suffer; it's a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don't get better, and it makes many of us frustrated, and it makes some of us mad at you. We don't want to face things we can't fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Crohn's, IBD, Cushing's disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder your defining pain - is something most of us don't regularly encounter. It's something most of us try to avoid. So you possess deep understanding of something that many doctors don't possess. Even doctors who specialize in your disorder don't share the kind of knowledge you can only get through living with a disease. It's like a parent's knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor especially one you've never met before you come with a knowledge of your disease that they don't have, and a knowledge of the doctor's limitations that few other patients have. You see why you scare doctors? It's not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

Don't come on too strong yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That's a good thing in the long run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect I say this one carefully, because there are certainly some doctors who don't treat patients with respect especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets find a good primary care doctor and a couple of specialists you trust. Don't expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won't try to fully understand you. That's not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don't avoid doctors one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can't work that way, and I don't think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It's OK to keep a list of your own problems so things don't get left out I actually like getting those lists, as long as people don't expect me to handle all of the problems. It helps me to prioritize with them.
Don't put up with the jerks unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don't feel you have to put up with docs who don't listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn't totally suck.
Forgive us Sometimes I forget about important things in my patients' lives. Sometimes I don't know you've had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don't want to admit my limitations. Be patient with me I usually know when I've messed up, and if you know me well I don't mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people with all the stupidity, inconsistency, and fallibility that goes with that who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Much wisdom and perspective here. And wonderfully spoken. I'm having an ileo reversal next Wednesday, and plan to share this with my colorectal surgeon and PCP. Thank you!


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Sorry, but I do not hold physicians in high respect at all and never genuflect before them as they all (with rare exception) feel they are entitled to. I get the feeling you are not the exception. Your rather long essay is rather presumptuous and I think condescending. The ostomates that I have spoken to over the years have all come to deal with the slight inconvenience they face on a daily basis. Granted, some have more issues than others, but they face them without feeling like they are to be looked at as "oddities" which in my opinion, is implicit in your writing. The bottom line is we feel (at least I do) happy to be alive and having to deal with an appliance is minor when you think of the alternative. We are normal people with normal families and we live normal lives! I never let a physician think that he/she is in control. I ask questions and insist on answers. Otherwise, they are history. And, you say "Don't come on strong." What?!!!!! I just can't go on. Are you for real? Maybe you are joking.



All the best of luck, Darla.

Thank you so much, dear lady!  
How to Manage Emotions with LeeAnne Hayden | Hollister

Hey "X",

Totally agree with your evaluation of the aforementioned post. Seems quite presumptuous to me as well. Methinks that someone is presuming that most of us poor souls don't have any idea about what we are all dealing with, or having to deal with. Kinda insults one's intelligence as well as being condescending.

Well spoken, my friend. To hell with the doctors (those that bury their mistakes!)


Boy, do I know what you are saying. There have been more than a couple of times I've scratched my head and thought, "This doctor doesn't want to touch me with a 10 ft pole." When they try a couple of things and they don't see the results, they have this look in their eye, like, "Oh no, you're back." I move on when I get that vibe from the doctor. I know when we've hit the wall.

Past Member

Budd002 ... Many thanks - I can only imagine how scary some of us are. Hard to want to look at me through their eyes. No answers. Carol


Did she really say: doctor-god illusion? Ha! Never have I had such illusions of them, never will. Any doctor expecting me to kowtow to him/her is a jackass at best. We have to be our own advocates. Any doctor too stupid to listen to their patients is not worth going to. Thankfully, most of my doctors have been both intelligent and did not overestimate their place in the universe. I don't think we can afford to be humble, in some areas it works, but not in this one IMO.

Past Member

My 85-year-old mother's doctor was as close to God - 'In her Eyes' as it is to be. She will never trust another person in the same way. Medical battles with her are really bad now. The fact that I didn't like or trust her old doctor made no difference in her eyes.

You and I may see things differently but in the past - doctors were viewed as very powerful people - close to God-like. Perhaps we can eventually come to see them as people who are mostly trying to do a good job for most of us - and businessmen. And, my plan is to never see another doctor. I hope to die without their assistance or judgment......

Backtracking just a bit - my ostomy doctor was an excellent surgeon (no information or further assistance from him) others really tried to help me ..... In general, doctors look at me askance as I do at them. They offer me no help and I ask none - it has been a year now without doctors or medications. I am no better - no worse.

Doctors, like teachers, are finding out that respect no longer comes with a title. It must be achieved by effective practice, commitment to the patient, and professionalism. I want doctors to be way up there on a pedestal because medicine is such a noble calling; but, for me, they must get there the hard way: by earning it one patient at a time, day after day. Dr. Rob wants a little compassion for doctors. OK. Let's acknowledge that they put in many years of study, have long hours and must listen to us complain. Done. Now, let's remember who are the professionals and who are the ones suffering. On a related note, many of the doctor's points are well taken where the patient can choose physicians. What's going to happen, however, when patients no longer have that choice? The way we're going, it's around the corner. Good thread.        PB
Past Member
Hay, Prime, good to hear your voice. Miss you. Carol

Good luck with your reversal. I live in Houston and have had an ileostomy for 11 months. I hope all goes well for you and keep in touch.

Thank you so much!


FYI....This was written by a doctor...

I didn't write this letter, I'm just the messenger and wanted to pass along the thoughts...This is simply a view from a doctor's perspective to ease our minds and tempers to let us know they too are still learning and trying their best to figure out our pain and illnesses.

We as patients often blame the doctor when we are not "fixed" quickly as one would like. How they also get angry when what they try to do to help us doesn't work.


I felt a wave of relief and gratitude that nearly brought me to tears reading this post. I've been learning to deal with a permanent colostomy for 11 months (Hey Texas! Got mine at MD Anderson, how 'bout you?). Anyway, I moved in August, leaving behind an incredible array of wonderful and supportive doctors and nurses. Having a very strong personality anyway, I decided when I came here (East Alabama) to make a conscious effort to see my new doctors with the attitude of a humble teacher, me being the teacher. I have to say it has worked wonderfully. By coincidence, my oncologist here knows my oncologist at MDA and my dermatologist at UAB was recommended to me by my derm in Houston as the only doc in this state who understands my other cancer. All that to emphasize the fact that yes, we do have to be our own advocates. Yes, doctors can come across as demi-gods. Yes, they are human and make mistakes. Some know more than others. Some care more than others. In the end, most of us will still have to deal with them on a regular basis for the rest of our lives. I am alive today because after years of asking questions, going from one doctor to another, and learning on my own about maladies which presented my symptoms, I finally found one who listened. Truly, living with a permanent colostomy is better than the alternative, but I do not feel "normal" and struggle with that every day. I appreciate this doctor's willingness to share something we have all experienced. We, patients and doctors, still have a long way to go in achieving perfect harmony with each other. I humbly suggest there is really only one thing that stands between us and that is a disease and/or condition that can never be reversed.


I soooooo agree with you, what right does this condescending medic have to come on this
sight and preach to us. This person chose to become a medic, we did not choose to become


I actually found some of it quite good, but do not hold many docs in high esteem. They have no idea what it's like to live with a chronic illness. Even my gastroenterologist has got things wrong with me many times, although I like and trust him, he is very arrogant. You just have to tell them when they are wrong. The bit about A&E docs was definitely true. They have no clue what Crohn's is. Get painkillers or whatever you need and either get admitted or leave! Don't believe everything doctors say, especially when you are newly diagnosed. I have been told so much crap in the past!

Counting My Blessings

Thank you for clearing that up. I was confused. So now I can say what I really think. If what your doctor is saying is true, then there must be lots of doctors who need counseling, or to grow up. I don't understand the difficulty in admitting that they know something is wrong, they just can't figure out what it is or what to do about it. That's what specialists or second opinions are for.

My first experience was with a primary doctor who lost my fecal stool screening itself, lost the bloodwork, and treated me for hemorrhoids from April to August without asking me if I had ever had hemorrhoids before. I hadn't. When I finally went to Rear Admiral #1, it was an 8 cm tumor, not a hemorrhoid.

My mom's doctor was my first Rear Admiral, doing my first ill-fated colonoscopy. It took me the longest time to realize I needed a second Rear Admiral who thankfully re-did the colonoscopy. No problems since that one. But mom did not want me to go to another doctor because she would be embarrassed to go back to him. I didn't want her to go back to him, but couldn't say that. I had to take charge of my own care.

Don't be too aggressive (can't remember the exact wording near the beginning) I walked into the second Rear Admiral's office without an appointment, was seen in 20 minutes. I told him I needed help, that the colostomy was closing, down to 1/8 inch and my first Rear Admiral had told me to go home and get something out of the kitchen drawer to dilate it.

My second Rear Admiral worked on me for an hour, trying to make the opening larger, sent all over the hospital for other equipment that might work, and finally decided the colostomy needed redoing. Thank God.

I feel the problem comes from doctors not asking questions, or not reading the answers we put on histories, or give to nurses before we see the doctor.

And furthered because of fear of a lawsuit.

I seem to remember your doctor thinking it should take a long time to build up a relationship with the patient. Come on. Really? I haven't had a doctor do a real physical since I was twenty. I haven't had a doctor spend more than 5 minutes with me in the office since I had a mole removed from my back in my thirties. (not counting the second Rear Admiral)

I spend more time with my dentist, but I can't talk, answer too many questions or ask, so I'd say my relationship with my doctors is very similar to my dentist.

There's an ostomate's bill of rights. Is there a patient's bill of rights?


Wow, how interesting! I thought my doctor was God, thought he would fix me up and send me home and all would be peaches and cream. Then I realized I was expecting the impossible. I have switched doctors many times, I was tired of the deer in the headlights look. My family was frustrated that my doctor could not find out what was wrong with me after two previous surgeries, what was hurting me, what was making me miserable and unable to function. I kept telling him something was wrong, I know myself, know my body, know the symptoms that can turn complicated. I had a battery of tests, x-rays, CTs, etc., nothing, he could not find a thing. Then back in June, extreme pain, perforation of the colon, fistula, surgery and now a colostomy which brings me here. I was in the hospital and in intensive care for almost a month...and then my first visit from my doctor. He had the deer in the headlights look, I knew that look already from previous doctors I had and from my visits with him. However, that day I knew he was human, not God. It was all in my head. He was humble and said to me "Eve, I don't know what happened, I don't know what to do". It is frustrating, I want someone to fix me so I can live a normal life but this is something I will have to live with for the rest of my life. Many times I felt that my doctor was not interested in helping me but after the incident with my doctors and reading this post, I have realized that doctors are normal people with our same frustrations or more. All we want is respect and to be treated with dignity. After being diagnosed with Crohn's and suffering through three surgeries, complications, etc., I have realized I am my own doctor as I am sure many of us here are. Doctors are instruments doing their troubleshooting to see what works, it would be helpful if they all were a little more human!

Past Member

Dear God - if that exists - I would like just one or two things fixed... or the tiniest bit of relief.

Sorry, tomorrow will be better.


A blog post on the subject of the medical profession:


OMG, you really took a beating with this post - I wish people would read all the way through something before they react emotionally. It was an interesting perspective, and I have seen that "open letter" before. It was posted on the United Ostomy Association of Canada website. We all have to remember that no one can fix everything, and that we have to question, question, question. After all, it is our body and our health - a person is not God, only God is God. And yes, we can be scary to doctors, but that's because we are ill and not at our best. We have to learn to take each other as we come and we have to learn how to deal - so to speak. No one is perfect, no matter who or what they are.


Again, I guess I need to clear a few things up... This was written by a doctor, not my doctor, maybe your doctor, maybe the person that lives down the street. It's one person's perspective, no one needs to agree with it nor does it mean it is truth or written in stone or law. It was a post that was sent to me. I found it interesting and thought I would simply share it.

Thanks Tess45 for noting the beating I am taking over this. My lord, people, lighten up! If it bothers so many of you, I will keep my posts like this to myself....


You're very welcome - I just hate it when people do not read something thoroughly and correctly. Whether it is a blog or a post or a newspaper, etc. - I remember a test we took in university, and all you had to do to pass the test was to read the first page, turn the test over, and sign your name on the back. If I remember correctly, about half of the class failed.



Yes, unfortunately, you did take some heat and I was one of the first to do so. And, I would gladly do it again and this time direct it to the idiot MD who said it in the first place. To you, I apologize as you do not deserve to be the recipient of an angry outburst. However, I have read and re-read your essay and nowhere do you say that you are not the author, but rather just passing on the dribble from some MD. Please accept my apology and next time identify whether it is or is not your own statement. I guess this was a case of "killing the messenger."




I have read and re-read the statement. Sorry, but I do not see how your analogy applies. In this case, everybody would have failed.

Past Member

Wow, what a pompous ass. At least she/he's honest. Doctors want to be worshiped, and this idiot wants to be worshiped even if she doesn't know as much as I do about my disease! Can you imagine going to a doctor that doesn't know more than you do about your disease? That's insane.

Not only do I want a specialist that knows all there is to know, I'm going to give them the same degree of questioning (or more) and interrogation than I'd give the contractor working on my house. He better be the best at what he does and he needs to tell me why I should trust him to do my surgery. He's making a lot of money, and my life's in his hands. We need to be the ones in control and have enough information to make the right decisions.

And, no one is above me, or you. We all deserve to be treated with respect, but no one should be worshiped in any way.

On the papers we fill out they ask what you'd like to be called and I say "your highness" just to bring the subject of hierarchy up right away. It's funny when they call me Your Highness, but it gives me the opportunity to tell them we're equals right away.

One thing she said that was true is they are people just like everyone else.


Xerxes - I apologize. I must have seen the squib line about who wrote it on the other site where I saw it posted a couple of months back and not this one - my analogy would have applied there - oh well - perhaps what would have been better said was that we should not assume that the person who "quotes or writes" something is not necessarily the author of the piece - anyways, I think that's my last nickel on the topic - there are better things to quibble and bitch about, right? LOL

Sign me laughing at the whole thing.


I know the doctors are not right all the time. But I don't understand, I have had 37 surgeries and 31 of them were hernias. Now I did have cancer in 1980 and radiation for 6 weeks, so they have always said that radiation is one reason why meshes will not hold my wall in. Well, I go to Cleveland Clinic, one of the best in the world, and the last doctor had to remove all 7 meshes for they were deceased. 12 hours for that surgery, then after that he said he put pig skin in and I would not have any more trouble... well, that was last February. Well, by April I had 3 more and still do. Well, I was to see him in February this year, he said that my insurance company is no longer paying for good material has meshes, for I was to have had the best. Well, it sounded to me that this doctor did not want to do any surgery on me again for he did 2 and still have a problem, and he is a plastic surgeon. So now I'm going to see another doctor in April. I also think he is a plastic surgeon and I pray to God that this can be my last and that he can help me, for if not, where do I go? I know the doctors at the clinic are good, but why can't they cure me? They can put hearts in another body, give new limbs, etc. so why can't they find something for me? If they have known that radiation has and still does destroy tissues, then why can't they find something else? If anyone has any advice for me, please write me and let me know your intake on this. Thank you all my friends on here. Sharon.

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