It was another one of those meetings with a lot of information to relay. Hopefully I won't forget anything but if I do feel free to remind me!
Sometimes it's really hard for us to communicate with our doctors, we feel unheard and often neglected, we get frustrated because we don't understand why we are being treated this way. I found a letter from a doctor that might help us understand it from their perspective. This bit of insight might help you learn a better way to reach your doctor and learn how to avoid some of the pitfalls of misunderstanding.
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, 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.
Sincerely,
Dr. Rob
This doctor also authors a blog called musings of a distractable mind check him out here: http://more-distractible.org/musings/
HOW TO GET THE MOST OUT OF YOUR APPOINTMENTS:
We went a little further and discussed some of the things we should and shouldn't do when visiting our doctors. I put together this list of suggestions based on my own personal experience throughout the years.
DO NOT wear pajamas to your visit. ( I know, I really do, but it screams I am lazy and don’t care! it’s a very easy way to be profiled. You don’t have to get fancy just make sure you are clean and put together.)
Be on time and even when it seems impossible do not miss your appointments.
Educate yourself about your condition if you know what it is, but go in with an open-mind and have realistic expectations.
No matter how mad or crazy all the other doctors have made you put on your trader-face and be respectful. You will get no where with a piss and vinegar expression. No one wants to help a jerk no matter how justifiable their anger. honey-bees and all that sap. IF YOU HAVE TO REPEAT IT TO YOURSELF THE ENTIRE TIME DO IT. Think like this: I am only hurting myself by showing my: hostility, anger, frustration, bitterness.
Don’t whimper or whine. This may be really hard but get that in check before you go to your doctor, it’s not attractive. Think about the most annoying thing kids do to parents. BEG and WHINE, it turns everyone off and doesn’t make anyone want to help you. Instead clearly state what your problem is. I find that clearing my throat before I go into a doctor’s office or before a particularly emotional answer helps me remove the whine from my voice. It’s ok to be emotional but when a doctor feels like you are depending on them to make you better and it’s unlikely they can help too much they may just feel like you aren’t worth the extra effort.
On that note: be assertive about your health, a doctor wants to feel like you are trying and if they don’t they will see you as a drug-seeker or a malingerer. What does that mean?
Try everything. It is helpful if you have some kind of exercise routine even if it’s just stretching be specific though. See other specialists and do alternative treatments. I know that’s asking a lot and some people won’t be able to maintain it, but they respect attempts.
Do your best not to react defensively if a doctor accuses you of something, instead pause, take a breath and ask them why they feel the way they do, or calmly explain why you don’t agree.
Don’t exaggerate symptoms to get what you want but do explain your worst days. Keep your story short and to the point. Don’t keep explaining or justifying.
Helpful tip: people love to hear their own names. It makes them feel special, appreciated, and important. So even if you have to write it down or read a name tag. Say their name! The nurses, the receptionist, the doctor. EVEN OVER THE PHONE.
Don’t wait for your doctor to ask you questions. Tell your story, keep it short but make sure they understand WHY you are there.
Decide what your goal is before you ever set foot in your doctor's office. What do you hope to accomplish?
A diagnosis or list of possibilities, reassurance, prognosis, treatment options, medical tests, new medications, doctor referrals. It is really important to have a goal in mind so you don’t leave feeling like you didn’t get anywhere.
Absolutely make a list of all the questions you have before going into the office. It is super easy to forget when you are in the moment. And make a note of which ones are most important to you.
If you have a list of questions make sure your doctor knows that first thing so he can make sure he has time to answer them.
Bring a list of current medications and supplements. If you decided to stop using a medication or discontinue a treatment/therapy/exercise plan you need to be able to explain why, not just it didn’t work. It might help to write that down as well.
Be sure to ask directly what you doctor thinks your diagnosis might be (he should be happy to answer that or give you a referral to someone who can.)
If your doctor suggests a test or a new medication there are a few questions you can ask to make sure you fully understand why they are suggesting them:
Why is this test or medication needed?
How would the results of a this test change treatment? (if a test won’t change treatment protocol there may be no real reason to go through it unless it helps with diagnosis or disability claims.)
Watching and Waiting might be more beneficial in that case.
What are we hoping for with this medication? And how will I know if it is working?
What are the side-effects or risks?
Why do you think this test or medication is important? (your doctor should be able to answer this convincingly, if he doesn’t know don’t do it.)
Once you have a diagnosis make sure you ask follow up questions like:
What kind of treatments are available?
Are there alternative treatments available and what do you recommend?
How do I know this is the right diagnosis?
What kind of results are you seeing in other patients?
What should I expect?
When is it appropriate to schedule an appointment?
How do you wish me to communicate with you for refills or prior-authorizations?
Ideas for responses to skepticism:
Your problems are just psychological (all in your head).
-Ok doctor I can respect that you think my problems might be that and I am willing to take the steps to prove otherwise can you get me a referral to a psychologist or neurologist so we can both learn how to treat my pain from whichever source it’s coming from.
You’re just overweight.
-You’re right doc I am overweight, and I would love to know if you have any suggestions on exercises I might do that won’t make my pain worse. I have tried -list them and I can’t keep them up because they cause me so much pain but I would be willing to try something else. I have also noticed that many overweight women around me don’t seem to have the same symptoms I do and I believe that even though I am overweight that isn’t the cause of all my pain, do you think there might be another explanation?
You’re Menopausal.
-It’s true doc that I have been experiencing -list menopausal symptoms but I have also been having other symptoms that just don’t feel like menopause, and after talking to my friends I feel very strongly that they are unrelated. Would it not be worth a try to help me feel better?
I think Fibromyalgia is a waste-basket diagnosis.
RUN they are unlikely to change their minds.
-I know that you likely got into this field to help people and people like me with disorders that are misunderstood present you with a challenge that is intimidating and hard to treat. I think it would be irresponsible of you to minimize the pain I am in simply because you don’t understand it. (if you would like to give them a second chance)
I don’t expect you to heal me doctor and I understand it must be hard to deal with patients who don’t fit nicely into a box I am only asking for your respect and compassion and a little help with learning how to manage my symptoms, I have realistic expectations, do you?
Fibromyalgia isn’t real.
No doctor should ever utter these words. It’s uneducated and in poor taste. again. RUN.
-Well doctor I would think in your profession you come across things that can’t be explained all the time, there have been a lot of instances in history where people say those same words and eat them later. Every mystery in science has not been solved, but with all the information out there to support fibromyalgia I wouldn’t think a doctor wouldn’t choose to ignore a possibility that they don’t understand... yet.
You’re just an addict looking for drugs.
Whatever you do, do not get defensive, DO NOT yell and scream.
-I’m sorry doctor that you feel that way. Can I ask why you suspect me of drug-seeking? Have I done something to give you the impression that I am faking or abusing my prescriptions?
I would like to help you see that I am taking my medications as you prescribed and that while I may have become dependent on them I am not addicted to them, I do believe they have helped me manage my symptoms in a way that other prescriptions have failed to do and would like to continue using them but I don’t like that you are worried about them. Is there anything I can do to help you feel ok with prescribing them?
A List of Drug-Seeking Behaviors:
Sometimes we do things that could inadvertently get us label as non-compliant, malingerers or drug-seeking. These are the ones I know about:
Dressing like a slob or weirdly dressing up too nice. It’s a Goldilocks thing.
Asking outright for a specific type of Drug
Saying you are allergic to everything (but that drug)
Losing weight drastically
Discontinuing treatments without consulting your doctor
Refusing to exercise or other therapies
Being on Disability
Cancelling appointments
Too many appointments
Repeated lab tests
Changing doctors often or seeing more than one at a time
Going to more than one pharmacy
Early refills or pay in cash
Calling doctors repeatedly
Going to the ER (specially if you are administered drugs there.) *if you go to the ER take your meds with you. If you signed a contract with your doctor and you take any pain-killers in the ER your pain specialist or doctor might view that as a breach of contract. (If you’re dying don’t take this advice, but then if you’re not dying the ER might not be the best option anyhow.)
Keep in mind you don’t have to follow any of these, this is just a guideline not a rule-book and I am not a professional… exactly.
It may be wise for you to record your visit. If you feel uncomfortable with this you can ask your doctor for permission to. It helps to explain that you have memory issues and need this to recall all their helpful advice. It also keeps them accountable.
I know now this was a lot of information and still only just barely scratches the surface for getting what you need from your doctor. I'm sure we will have more information on this topic again.
If you are interested more in the doctor patient relationship and how to understand why doctors treat the way they do there is a book out titled: When Doctor's Don't Listen by Leana Wen M.D. and Joshua Kosowsky M.D. There are some great stories about failed treatment protocols, how to get your doctor's attention and what things you can do to improve your visits.
http://www.whendoctorsdontlisten.com this site also contains a blog and other helpful information.