Helping The Doctors Help Us
When we go to the doctor with a health complaint, we are hiring that doctor to diagnose and propose treatment. Do we always leave the physician’s office knowing exactly what that physician’s diagnosis is? Do we always leave the office clearly understanding the treatment plan? Underline these words in your mind: "diagnosis" and "treatment plan."
A couple of weeks ago, I collected lists of “dismissal” comments that physicians had made to people who post on the IAS board. I had a list of my own. My goal was to try to categorize the types of “dismissal” comments. Then, we can improve OUR communication skills so that these dismissal comments will not continue to be dead ends. I finally get around to that at the end of this letter. First, let’s set the scene.
Physicians, as they seek to help us with our medical problem, have several tools that they use. The tools are: 1) educational background, 2) the facts provided to them by current medical research, 3) tests and lab work, 4) their experience, and 5) the information that you give them.
Let’s take a look at those tools individually as they apply to ARD.
Educational background—It seems that most physicians have learned in their formal educational training that “adhesions don’t cause pain.” And even if they acknowledge that in some cases that adhesions may cause pain, they are reluctant to treat surgically. They have learned (and rightly so) that more surgery causes more adhesions. They are pledged by oath to “do no harm.” Their training and oath tells them that it’s best to not intervene in most cases.
Current medical research—You can get involved here. Spend some time looking at what is published about adhesions and pelvic pain in the medical literature. Read from internet sites posted in the IAS archives. Find the studies “from the horse’s mouth” on medscape.com or medline.com. As I read the kinds of studies that are in the current medical literature, I got a better understanding of some of the psychological dismissals that we get. Apparently, it is a well-established fact in the medical literature that women with a history of sexual abuse have a much higher rate of complaints of pelvic pain than those who do not report this history. That muddies the diagnostic water for us. But, our knowledge is power. Because we know that a complaint of pelvic pain immediately raises those questions in a physician’s mind, help settle these questions by bringing the issue up yourself.
Tests and lab work--Keep in mind that there are soooooooo many things that can cause pelvic pain. The doctor MUST rule other conditions in or out. Remember…we hire the physician to diagnose and treat. We need to let them do their jobs. We need to learn all we can about the tests and the meaning of the results of those tests. If we don’t understand, it’s our responsibility to say, “I don’t get it!”
Their experience—There is no way of knowing what past experiences with patients have shaped the way that a physician responds to your complaint. If the doctor has had ten patients who had more pain complaints after adhesiolysis, then that doc is going to look at your through his set of experiences. If the physician has sent patients off to adhesion specialists and those patients have returned happy and with less pain, then that set of experiences will also be part of the lens through which the doctor looks at you. Asking a physician about his experiences and observations of patients with ADR is certainly fair game.
The information that YOU bring—Now things get good! First, the doctor needs to know that you expect a diagnosis and a treatment plan. Never stray from that path and don’t let the doctor wander either. Using the words “diagnosis” and “treatment” with the doctor will let the physician know that you are focused. And the focus is what you are hiring him/her to do for you.
Remember that if your medical information is not written in the chart, it doesn’t exist as far as the doctor is concerned. You don’t feel comfortable that all the information that you want in the chart is getting in the chart? Well, write it up, hand it to the doc (better yet…mail it before you go), tell him you want to go over the information that you are giving him and ask that a copy what you wrote be put in your chart. The International Pelvic Pain Society (they are on the web) has a wonderful, extensive questionnaire that you could complete and take with you. It’s serious-looking stuff! It sends a strong message to the physician that you are willing to do anything to help him/her get all the information needed to make a correct diagnosis and plan treatment.
One of our members was given type of psychological “pain test” by a pain physician that verified that her pain was real and that it was not in her head. She’s looking into getting information about this pain-screening tool for us. I think it might be helpful to validate our pain in this objective manner. And then…stick those results in your chart also!
Want to make most physicians cringe? Say, “I read on the internet…….,” and get ready for the eyes to roll. I would like to see us have a way through IAS to be able to download complete articles from medical journals that we can take to our physicians. Why? Because, if it is in complete form from a “peer-reviewed” medical journal, that document will be believed by the physician. “I read it on the net,” is just not sufficient. We all know that we can read ANYTHING on the net. If we believe that there is information available that our docs do not have, take it to them in the medical journal form that they respect.
Now…back to where this little project began. I’ve been thinking about communication strategies we can take with us to the doctor’s offices to help avoid the harmful dismissals that we’ve all seem to have encountered. I work with people with hearing loss and they need a lot of communication “repair” strategies. “So,” I thought, “let’s see how we could apply that to our situations.”
Be concise in your descriptions of how you feel. Be still while the doc is talking. Really listen. Maintain eye contact. Slow down the exchange. How? Ask for clarification. Say “So what you are saying is______?” Use hand gestures to reinforce your words. Use the basketball “time-out” gesture with your hands to stop the physician’s direction when you want clarification. Take a large pad of paper and pen and say…”I want to make sure I get everything down” and start recording what he is telling you. Show confusion on your face when you question what the doc says.
If we can understand what the doctor is thinking about us when we sense we are being “dismissed” we have a better shot at challenging that dismissal. Based on the information you all sent me about the dismissals that you had gotten from docs, I could identify the following dismissal types. If I’ve missed some, write me back and I’ll add yours!
The Mental…or-at-least…Tempermental Dismissal
Doctor says: "You are just a tight-assed woman with a little myofascial pain." "You have a Type A personality...more susceptible to stress." "You need the pain to feel alive." "There is a pain loop in your brain...you feel a bit of pain when you are stressed and you feel more stress when you feel pain. It's a vicious cycle. You need to break the cycle." "We don't really if the pain is physical or mental. Either way, you need help." "All women have pelvic pain from time to time."
This type of assessment makes us crazy if we aren’t already! None of these comments listed above qualifies as a diagnosis and the lack of a treatment plan identifies it as a dismissal. Let the doc know that it’s time to back up these comments with the evidence. Try some of the following lines:
“I disagree.” “You said that in a joking manner. How does what you just said apply to my diagnosis and treatment plan?” “As the solver of my medical puzzle, I need to know if you are using what you just said as the medical diagnosis?” “Are you diagnosing my problem as a personality disorder?” “You are saying that mental illness is the source of my pain?” “What is the diagnostic code that you will submit to my insurance company today?” “How can we prove your theory or disprove your theory?”
The You-have-some-unusual,-but-not-harmful,-anatomical-features Dismissal
Doctor says: "The barium enema shows that you have the gut of an 80-year old." “You toe out when you walk.”
While what the doctor is pointing out may well be correct, it falls way short of getting to the root of the problem. It’s time to press for more for more information on this diagnosis. Try:
“Can you direct me to the most recent research that supports this diagnosis/treatment?” “What is the diagnostic code that you will submit to my insurance company today?” “How can we prove your theory or disprove your theory?” “Are you 100% sure that this is the complete explanation for my difficulties?” “What is your treatment plan?”
The You-are-lazy-and-out-of-shape Dismissal "You just need to get up and get moving." "Your problems are postural....stand up straight." "You just need to work on your abs and stretch out those tight hamstrings."
One of the aspects of ADR that I see expressed often in the posts is that exercise makes our pain worse. I need some help from those who post here to help know how to address this. I just shuffled off to physical therapy, worked hard…very hard….and then when I still hurt, it all had to be re-examined. I wonder if there are ways of talking about the type and character of our pain that would separate it from the types of aches and pains that physical therapy helps a lot. Like I said, some of you can probably some up with better. For now, this is the best I have to offer in the way of a response:
“What you just said does not line up with my experience.” “I disagree.” “How can we prove your theory or disprove your theory?”
The Marriage/Relationship Dismissal
Doctor says: "How is your relationship with your husband?" “You are wanting to avoid sex.”
This requires a frank answer from us. Fortunately, I have a wonderful marriage and could easily challenge this line of inquiry. We must be focused on making the doctor look back at the pain and not the marriage/relationship. Try:
“As the solver of my medical puzzle, I need to know if and how you are using what you just said as the medical diagnosis?” “I disagree.” “Can you direct me to the most recent research that supports this diagnosis/treatment?” “What is the diagnostic code that you will submit to my insurance company today?” “What you just said does not line up with my experience.” “Are you diagnosing my pain as being a martial/relational problem?”
The Helpless Dismissal "I have nothing to offer you." ”What do you want us to do for you?”
This is the BEST of all dismissals because the doctor is being HONEST! The doctor is saying, “I don’t know what to do for you.” This doctor will not send you off for unnecessary surgeries and treatments. Now the door is open for you to:
Take in information that you have gathered from this site. “Tell me why and if this is wrong,” you say. Ask his/her opinion about articles from medical journals written by physicians who specialize in adhesions. Ask, “Who is the world’s foremost expert in dealing with problems like mine?” This doctor has said that the tools to help you are not within his/her realm. Engage this physician in a cooperative effort to move your medical care to the next level.
Now, I should have a nice little summary statement. I don’t. I just have to return to the opening paragraph and ask for your help in editing and expanding what I have written. The goal is to come up with type of guide that will empower us when we deal with the daunting problem of getting appropriate medical help for our complicated problems. What I have written comes only from my own experiences. I can do no better than to walk in the light that I have. Feel free to further enlighten me!
-- Mary Wade