My doctor and I have developed a strong doctor-patient relationship. He knows that when he tells me to rest I won't listen, that I will be on top of calling insurance, and when I say I need to go to the hospital, it's definitely time. I know that he doesn't want to resort to surgery until we've exhausted everything else, and he will absolutely look into most every question I have. We have a history. We have patterns. And I know that we have a profound respect for the others' opinion.
I'm struggling to find a good way to articulate how important this is, particularly to anyone who doesn't manage some kind of chronic condition. My GI (gastrointestinal) doc is my main doctor. I have a primary care physician (or GP, if you prefer), but I see him maybe once every other year. By contrast, I go to my GI doc's office every 8 weeks to administer my medication as well as managing bloodwork, phone conversations about those bloodwork results and various other symptoms, arranging and undergoing larger tests (I get a colonoscopy every other year), and otherwise a checkup two to four times a year, depending on the state of my disease. Aside from my Crohn's, I don't tend to get sick--or when I do, I make it count--or maybe it's just that things don't seem that big of a deal by comparison. Or perhaps there isn't space for other issues when the flare is too "loud." I've said glibly more than once that "my immune system is so good it attacks me." This is both hilarious and sad to me. There are a few specialty doctor's thrown in there, too, but my GI doc and I get each other in some good ways.
But it wasn't always that way. I've had other doctors where our relationship was not so constructive. There have been a couple now that I have dropped and can't be bothered to feel guilty about it. One of them is still in the same practice as my GI doc. This happens. I don't think most doctors take it personally anyway; that doctor simply wasn't a good fit for me but maybe is a good fit for someone else. By this point, I have some clear guidelines of what makes a good physician for my needs and what makes a not-so-good physician. I have a fair bit of patience--an okay doctor is okay, depending on what kinds of purposes and durations of time we'll have with each other--but there are some very real sins and dealbreakers. The list of what will drive me to seek a different doctor is short, but it is firm.
I'm struggling to find a good way to articulate how important this is, particularly to anyone who doesn't manage some kind of chronic condition. My GI (gastrointestinal) doc is my main doctor. I have a primary care physician (or GP, if you prefer), but I see him maybe once every other year. By contrast, I go to my GI doc's office every 8 weeks to administer my medication as well as managing bloodwork, phone conversations about those bloodwork results and various other symptoms, arranging and undergoing larger tests (I get a colonoscopy every other year), and otherwise a checkup two to four times a year, depending on the state of my disease. Aside from my Crohn's, I don't tend to get sick--or when I do, I make it count--or maybe it's just that things don't seem that big of a deal by comparison. Or perhaps there isn't space for other issues when the flare is too "loud." I've said glibly more than once that "my immune system is so good it attacks me." This is both hilarious and sad to me. There are a few specialty doctor's thrown in there, too, but my GI doc and I get each other in some good ways.
But it wasn't always that way. I've had other doctors where our relationship was not so constructive. There have been a couple now that I have dropped and can't be bothered to feel guilty about it. One of them is still in the same practice as my GI doc. This happens. I don't think most doctors take it personally anyway; that doctor simply wasn't a good fit for me but maybe is a good fit for someone else. By this point, I have some clear guidelines of what makes a good physician for my needs and what makes a not-so-good physician. I have a fair bit of patience--an okay doctor is okay, depending on what kinds of purposes and durations of time we'll have with each other--but there are some very real sins and dealbreakers. The list of what will drive me to seek a different doctor is short, but it is firm.
Dealbreakers
Danger/Safety Concerns
I had a radiologist once that was to perform a barium enema on me. It was about as terrible as it sounds. Firstly, I felt pretty wretched going in there--at that point, if I didn't eat when I was hungry I was going to feel very sick for the rest of the day and I couldn't eat for X amount of time before the test. I had the ileostomy at that time. The test was to determine how the tissue was healing between the rectum and the part of reattached colon (loop ileostomy allowed some matter to go through, but not all; more details here). At that point, my rectum was very inflamed and was starting to become more and more scar tissue than flexible tissue--they had to use a pediatric size for the test and it still hurt like hell. I will never go back to this particular radiologist. Andy has instructions to not allow the particular radiologist into the equation if I am unconscious and cannot insist by my own power. I say this playfully: radiologists are sadists. "Hold that extremely uncomfortable/painful position where you feel like you're going to pass out for four more shots. Don't move." The real point, though, where I was dead certain that I was never going back to this person was when I had to shout "Woah! Wrong hole!"
If I feel that my safety is compromised or that I am in danger, that's a dealbreaker. Yes, medical procedures are not comfortable and some are full-out painful, but there is still a line. I had a nurse at Mayos that tried to help me onto a bed by pushing against my fresh incision--that was a mistake that I would not allow her to do again. If my caretaker has little awareness about the situation, I don't feel that my safety and wellbeing are well met in other necessary ways. This is not to say that the doctors I've kept have never made mistakes or accidentally harmed me, but there were apologies and an awareness of my feelings/needs in the situation or at least the mistakes were not past a certain level of wrong. Not applying the testing equipment to the right part of my body, that is definite no. Laying a careless hand on a fresh wound is a definite no.
Our previous dentist left Andy alone in the dentist chair for three hours, because they went to start someone else and never came back and they were overbooked, according to them. He didn't even leave with the fillings he went in for, which our new dentist asserts were not actually necessary. Yeah, no, we weren't going back there for anything.
I might try to suggest that people find where these lines are for themselves, but I know that I certainly didn't know them until they were crossed. It's a hard element to pin down. I don't think I could have anticipated the examples that I mentioned. But I can at least explain the feeling that it left me with. Both of the situations I experienced fill me with a lot of anxiety to think back on them, the nurse specifically part of a whole traumatic event, when they put in a surgical drain between my ribs and I had to cooperatively breathe at specific points--I was awake and in a lot of pain before a fat needle was involved. Andy's example mostly just makes me angry. In any case, we no longer trusted the person directing our treatment. That particular feeling of being unsafe has not diminished when I think of those incidents, and the persistence of that anxiety is what has cemented it for me.
I had a radiologist once that was to perform a barium enema on me. It was about as terrible as it sounds. Firstly, I felt pretty wretched going in there--at that point, if I didn't eat when I was hungry I was going to feel very sick for the rest of the day and I couldn't eat for X amount of time before the test. I had the ileostomy at that time. The test was to determine how the tissue was healing between the rectum and the part of reattached colon (loop ileostomy allowed some matter to go through, but not all; more details here). At that point, my rectum was very inflamed and was starting to become more and more scar tissue than flexible tissue--they had to use a pediatric size for the test and it still hurt like hell. I will never go back to this particular radiologist. Andy has instructions to not allow the particular radiologist into the equation if I am unconscious and cannot insist by my own power. I say this playfully: radiologists are sadists. "Hold that extremely uncomfortable/painful position where you feel like you're going to pass out for four more shots. Don't move." The real point, though, where I was dead certain that I was never going back to this person was when I had to shout "Woah! Wrong hole!"
If I feel that my safety is compromised or that I am in danger, that's a dealbreaker. Yes, medical procedures are not comfortable and some are full-out painful, but there is still a line. I had a nurse at Mayos that tried to help me onto a bed by pushing against my fresh incision--that was a mistake that I would not allow her to do again. If my caretaker has little awareness about the situation, I don't feel that my safety and wellbeing are well met in other necessary ways. This is not to say that the doctors I've kept have never made mistakes or accidentally harmed me, but there were apologies and an awareness of my feelings/needs in the situation or at least the mistakes were not past a certain level of wrong. Not applying the testing equipment to the right part of my body, that is definite no. Laying a careless hand on a fresh wound is a definite no.
Our previous dentist left Andy alone in the dentist chair for three hours, because they went to start someone else and never came back and they were overbooked, according to them. He didn't even leave with the fillings he went in for, which our new dentist asserts were not actually necessary. Yeah, no, we weren't going back there for anything.
I might try to suggest that people find where these lines are for themselves, but I know that I certainly didn't know them until they were crossed. It's a hard element to pin down. I don't think I could have anticipated the examples that I mentioned. But I can at least explain the feeling that it left me with. Both of the situations I experienced fill me with a lot of anxiety to think back on them, the nurse specifically part of a whole traumatic event, when they put in a surgical drain between my ribs and I had to cooperatively breathe at specific points--I was awake and in a lot of pain before a fat needle was involved. Andy's example mostly just makes me angry. In any case, we no longer trusted the person directing our treatment. That particular feeling of being unsafe has not diminished when I think of those incidents, and the persistence of that anxiety is what has cemented it for me.
Not Listening
This one is a little more complex. I know that people come into the doctor's office with WebMD print outs and all kinds of ideas about what they have and how to fix it from five minutes of internet searching. I like to think that my thoughts on my medical care are more informed than that, but I know that the doctor can't always just take my word for it, either. But I know a lot about my condition and a lot about my body. I expect the doctor, nurse, etc. to have seen a lot of cases and have a general idea of how to treat it as a result; they know the science and medicine, but I know my body. I have had more than one rant about a particular medication that many, many doctors have tried to prescribe me that I do not react well to. Truth be told, no one really does. If you can muscle through the symptoms, it does its job well, but I'm not a fan of projectile vomiting. Trying to talk me into a medicine that I know doesn't work well for me and my body chemistry is a red flag. I feel ignored and that my feelings aren't valid to the "expert" in this case. No means no.
When I met my gynecologist and, more recently, my new dentist, they came in clearly having read my chart and history, immediately addressing the elephant in the room, which was how my care was going to be affected by my history with Crohn's. Both allowed me to say my peace regarding the abridged history of my medical journey and asked questions based on what I told them. They also brought in specific things that I might need to watch for because of my particular symptom history and even the long-term effects of certain medications. They listened to my experience. Subsequently, I am definitely keeping both of these wonderful women in my care team.
By contrast, I had one specialist recently that ignored my experience, a dermatologist referenced here, that I have been looking into possible alternatives. The GI doctor that I had previously, that I switched off of, I made that decision when I was eighteen or so. He never did talk to me like I was in the room. My father and I were in the exam room for a while, and I was looking at the anatomy chart and conditions listed on a poster. When the doctor came in, we had some discussion and then he asked if I had any questions. I asked him something about a condition on the poster. He finally looked at both my father and I and then asked, "Do you have any questions about your condition?"
I shut down immediately. As Dad and I were leaving, I started to broach that I didn't really like that doctor, trying to articulate that I didn't feel comfortable/valued/something. Dad, perhaps with a touch of relief, asked me if I wanted to switch--he didn't care for him either. I did feel bad at first about going to a different doctor in the same office, if I'm being honest, worried about running into him. Dad helped me get over that with some good advice.
When I met my gynecologist and, more recently, my new dentist, they came in clearly having read my chart and history, immediately addressing the elephant in the room, which was how my care was going to be affected by my history with Crohn's. Both allowed me to say my peace regarding the abridged history of my medical journey and asked questions based on what I told them. They also brought in specific things that I might need to watch for because of my particular symptom history and even the long-term effects of certain medications. They listened to my experience. Subsequently, I am definitely keeping both of these wonderful women in my care team.
By contrast, I had one specialist recently that ignored my experience, a dermatologist referenced here, that I have been looking into possible alternatives. The GI doctor that I had previously, that I switched off of, I made that decision when I was eighteen or so. He never did talk to me like I was in the room. My father and I were in the exam room for a while, and I was looking at the anatomy chart and conditions listed on a poster. When the doctor came in, we had some discussion and then he asked if I had any questions. I asked him something about a condition on the poster. He finally looked at both my father and I and then asked, "Do you have any questions about your condition?"
I shut down immediately. As Dad and I were leaving, I started to broach that I didn't really like that doctor, trying to articulate that I didn't feel comfortable/valued/something. Dad, perhaps with a touch of relief, asked me if I wanted to switch--he didn't care for him either. I did feel bad at first about going to a different doctor in the same office, if I'm being honest, worried about running into him. Dad helped me get over that with some good advice.
A caretaker that doesn't seem present when they're talking to you is not okay. Any caretaker that would direct questions about me to my husband, parents, etc. when I'm right there is also not acceptable. Condescending and/or sexist comments are also not okay. A caretaker that writes off my pain or symptoms is a definite "no." In the end, I have to feel that I'm heard. This doesn't mean that I am right or get my way, but I need to feel that the concerns and ideas that I have brought up were at least heard and addressed. And this understanding should ideally go both ways, that my healthcare professional can explain the science and reasons why we're pursing a particular path.
Sins
Staff Issues
Staff members that are not the doctor that display either of the "dealbreaker" components can be a problem, too. Maybe the physician/medial professional in question is awesome but the support staff is decidedly not. This, while not desirable, is certainly annoying but as it is not with that primary contact and our time is limited, I can let some of that slide. They are not who I came to see. And there's also a place where I can ask for a different person or address these concerns with the caretaker, office manager, etc.
Not Respecting my Time
The wait time at a doctor's office is stereotypically an issue. I can think of two specialists that I see that can run a little behind. But with them both, I know from experience that when I am in there with the medical professional in question I have their full attention. Whatever questions I have, whatever exams or minor procedures are needed, they are focused on my case in that time. I expect that they do the same for other persons, which means that sometimes they get a little behind in the day. However, I do still need to get back to work. Waiting can be a good thing--it means you're not dying--but when a lack of timeliness becomes a chronic issue, that I expect to wait at least an hour past my time, that's a point of frustration. I have a fair bit of anxiety about taking time off from work to attend to my medical needs enough as it is.
Staff members that are not the doctor that display either of the "dealbreaker" components can be a problem, too. Maybe the physician/medial professional in question is awesome but the support staff is decidedly not. This, while not desirable, is certainly annoying but as it is not with that primary contact and our time is limited, I can let some of that slide. They are not who I came to see. And there's also a place where I can ask for a different person or address these concerns with the caretaker, office manager, etc.
Not Respecting my Time
The wait time at a doctor's office is stereotypically an issue. I can think of two specialists that I see that can run a little behind. But with them both, I know from experience that when I am in there with the medical professional in question I have their full attention. Whatever questions I have, whatever exams or minor procedures are needed, they are focused on my case in that time. I expect that they do the same for other persons, which means that sometimes they get a little behind in the day. However, I do still need to get back to work. Waiting can be a good thing--it means you're not dying--but when a lack of timeliness becomes a chronic issue, that I expect to wait at least an hour past my time, that's a point of frustration. I have a fair bit of anxiety about taking time off from work to attend to my medical needs enough as it is.
Slow on Paperwork/Details
When the insurance company is waiting on one piece and another component hasn't been faxed in yet, this can slow down the whole process. With how expensive some of my medications are, I MUST have the paperwork in and done before the medication is administered. We cannot afford to be on the hook for all of it, if something goes sideways with the paperwork. My GI doctor's office won't administer it without the prior authorization or whathaveyou at least verbally approved from the insurance, though the physical letter (faxed or otherwise) is the preference. My GI office knows that I'm proactive, calling and making myself annoying--polite and friendly, but persistent. An office that won't work with me or won't get back to me doesn't stay around long either.
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I've told people bluntly before about their doctor, based on the concern they've told me to "Drop their ass." You deserve to be safe. You deserve to feel heard. Your time and urgency should be respected. I know that sometimes health insurance dictates that you need to pick from a small pool or a certain specialist, but it is possible to file for exceptions in certain situations and definitely get a solid primary care physician that can help advocate for you. Multiple sins can add up to their own dealbreaker, symptoms of not listening can accumulate over a few visits or be a single violation, and there are other scenarios that I have yet to come up with, but theses are still the main components that other issues have ultimately reduce to. I approach the appointment with the expectation of having a dialogue with a knowledgeable peer rather than an authoritarian dictation. Some healthcare professionals are okay with this, often appreciative; a small pool of others, I have found, treat questions with contempt. I don't keep the latter long. The thing is we have to work together. I cannot be silent about my symptoms--by definition, no one knows these but me and it is important to communicate them--and I also have to advocate for myself, by asking a lot of questions and being insistent on their answers. And by contrast, any treatment that healthcare professional might recommend is irrelevant and useless if my cooperation isn't there. It is a team effort, and I am interested in building a strong, productive team.
That's the key thing to remember--you are a part of your health care team, too. And I feel it's important to be an active part of your team rather than a passenger. Remember that this is a mutual relationship to meet your health goals and no one has a greater stake in this than you. Communicate. Advocate. Demand answers. AND follow the course of treatment that you've agreed on to the best of your ability--take medications on time, actually do the physical therapy, follow-up when needed, and otherwise generally pull your weight. Assemble your team with thought and then work with it.
When the insurance company is waiting on one piece and another component hasn't been faxed in yet, this can slow down the whole process. With how expensive some of my medications are, I MUST have the paperwork in and done before the medication is administered. We cannot afford to be on the hook for all of it, if something goes sideways with the paperwork. My GI doctor's office won't administer it without the prior authorization or whathaveyou at least verbally approved from the insurance, though the physical letter (faxed or otherwise) is the preference. My GI office knows that I'm proactive, calling and making myself annoying--polite and friendly, but persistent. An office that won't work with me or won't get back to me doesn't stay around long either.
-----
I've told people bluntly before about their doctor, based on the concern they've told me to "Drop their ass." You deserve to be safe. You deserve to feel heard. Your time and urgency should be respected. I know that sometimes health insurance dictates that you need to pick from a small pool or a certain specialist, but it is possible to file for exceptions in certain situations and definitely get a solid primary care physician that can help advocate for you. Multiple sins can add up to their own dealbreaker, symptoms of not listening can accumulate over a few visits or be a single violation, and there are other scenarios that I have yet to come up with, but theses are still the main components that other issues have ultimately reduce to. I approach the appointment with the expectation of having a dialogue with a knowledgeable peer rather than an authoritarian dictation. Some healthcare professionals are okay with this, often appreciative; a small pool of others, I have found, treat questions with contempt. I don't keep the latter long. The thing is we have to work together. I cannot be silent about my symptoms--by definition, no one knows these but me and it is important to communicate them--and I also have to advocate for myself, by asking a lot of questions and being insistent on their answers. And by contrast, any treatment that healthcare professional might recommend is irrelevant and useless if my cooperation isn't there. It is a team effort, and I am interested in building a strong, productive team.
That's the key thing to remember--you are a part of your health care team, too. And I feel it's important to be an active part of your team rather than a passenger. Remember that this is a mutual relationship to meet your health goals and no one has a greater stake in this than you. Communicate. Advocate. Demand answers. AND follow the course of treatment that you've agreed on to the best of your ability--take medications on time, actually do the physical therapy, follow-up when needed, and otherwise generally pull your weight. Assemble your team with thought and then work with it.
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