Guest Post - Dr. Donald Thomas, Author of The Lupus Encyclopedia - due out this year!


A few years ago, I ran across a very interesting book called, “Say The Magic Words” by Lynette Padwa. It was eye opening in that it talks about the inside language, policies, and procedures of different professions. Each profession has its own “secret” language, and if you have an inside knowledge of this “secret” language and use it, you can really gain a significant advantage when dealing with these different specialties. This book goes into how to speak to attorneys, car dealers, doctors, hairstylists, hotel reservation agents, landlords, nannies, mechanics, real estate brokers, therapists, teachers, and many more.

It got me thinking that the exact same thing occurs between doctors and patients. Doctors go to school for many years to learn and refine their skills on how to take care of patients, but in the end, they end up speaking a highly technical language that is “foreign” to most people. Yet, since we are completely immersed in that language and processes most of our lives, we can easily forget what it is like to be a nonmedical person. This unfortunately, can lead to a clash between some doctors who forget how to connect and the patients who need our help. We actually do not want to be a “secret” language, but it often ends up being that way. Many doctors are very good at learning to communicate to the patient (i.e. interpret things in layman’s nor nonmedical persons’ terms), but unfortunately, some never reach this important point.

As the patient, though, you do have it in your power to turn things in your favor. If you know the right things to do and say, it can actually help communicate what is wrong and what you need to the most mechanical, scientific physician. If fact, I feel that this is such an important topic, that I devoted an entire chapter in my upcoming book, The Lupus Encyclopedia, to this topic. In the meantime, at the kind request of Sara Gorman, I’d like to present some of the “secrets” on getting as much out of your doctor’s appointment as you can in the next few paragraphs with some “do’s” and “don’ts”.

1) DON'T go in with 4 pages of single spaced, 2000 word list of all the symptoms that have occurred since your last visit unless you are prepared to see your doctor's eyes roll and try to compose him or herself. On the surface, it is easy to convince yourself that you are doing the right thing; you are being very comprehensive, and you are making it “easier” for the doctor to know exactly what has happened. But you must remember, that your doctor has many patients to see that day, plus has many other duties (reviewing labs, reading x-rays, discussing cases on the phone with other doctors, studying the most up to date research articles) and he or she only has so much time in a day to do everything. This sort of list will only overwhelm him or her and will most likely not even be read, or will be skimmed at best.
     - Do write down 3 questions or problems that are most important to you and write them down very briefly; be short and concise; maximize your description efficiency.

2) DON'T say... "Oh by the way...." when your doctor is about ready to leave the room. He or she probably has rooms full of other patients and was mentally prepared to go onwards.
     - Do give your list of 3 questions or problems to your doc immediately at the beginning of the visit so he or she can maximally devote appropriate time to your concerns and address them. Also, make sure to let him or her know what medications need filled at the very beginning as well (it does take some time to write prescriptions).

3) DON'T be rude or demanding to staff, phone people, office manager, then be all nice to the doctor.... you will only sabotage your image at the office and things will happen that you don't want (it shouldn't, but people are people, and they react certain ways to impoliteness). Upfront I will say that the vast majority of patients are wonderful and nice to everyone, but I am occasionally surprised to find out that someone who I thought was very nice is actually rude and demanding to the rest of my staff and have a bad reputation. This ends up causing friction between the staff and the patient and only ends up making it difficult for that patient when they are not in the room with the doctor.
     - DO make that extra effort to make ALL staff your best friend, always smile, be courteous; brownies work great. If a staff person is impolite or rude to you; smile, back off, write down the person's name, and don’t confront the person. Then when your visit with the doctor is over, ask to see the office manager, and very tactfully let him or her know what happened. We only want the best staff... any rudeness or unprofessionalism is bad... and we may have a staff person who we not know is behaving that way and needs extra attention/training. You, the patient, are the most important person to us, and we want you to be treated courteously and professionally at all times.

4) DON’T ramble on and on about a symptom and all of the circumstances around it including what your aunt was doing at the time and how you were on vacation because of such and such and such and such and such and such (you know what I mean... we all know those people). Some people are great talkers and they view themselves as great communicators not realizing that they take up way too much time with their descriptions. By the way, people who tend to do this are usually incredibly nice people, and view themselves as good communicators. They often get upset when they are “cut off” and not allowed to finish their stories; they often feel that “no one listens to me”. That may be a good clue, as many people who tend to “ramble on” do not have the self-awareness that they do so.

     - DO write down your symptoms succinctly. Writing it down and rehearsing your symptoms can be good practice at how to verbalize your symptoms in a concise manner. If you have pain in your back... write down when it started, where in your back, did it come on gradually or abruptly, does it come and go or is it constant, do any body postures/activity/meds/heat/ice make it feel better, does it radiate anywhere, what have you taken for it and did it help, have you ever had the problem before, and have you had other symptoms such as fever, weight loss, trauma, etc. Describe the problem chronologically from the moment it happened (get rid of all the extra fluff) to the present moment, is it better/worse/or the same at the present time. Anywhere from 80% to 90% of the time, doctors know what is wrong with a person simply from getting an excellent, concise history.

Here is a good website, the Pain Resource Center, that lists a succinct way to describe pain. It can also be used for other problems such as nausea, tingling sensations, depression, cough, etc. This list may seem very mechanical, but if I had someone simply answer these questions each time they described a symptom, they would be way ahead of the game and make my diagnostic job much easier (and hence, make a correct diagnosis quicker and help my patients get better quicker).

5) DO always take a list of your meds/allergies/med problems, keep it up dated at all times. When the nurse takes your med list, don't even answer anything... just hand over the list... this can keep huge mistakes from occurring in the med list. In fact, this recently happened to me. I only take one medicine, I answered the nurses question about my meds, not realizing she did not ask me everything. The list the doctor actually saw was different. If I had simply handed her my list of 1 medicine, she would have easily deleted the incorrect medicine that she had on her list.

This is absolutely one of the most important habits to get into. Every day, at least several times a day, I run across incorrect medication lists. The patient “assumes” that the doctor’s list is always the same as what they are taking. This does not take into account possible errors from the pharmacy, older prescriptions accidentally getting refilled instead of newer ones, medicine changes not being noted correctly in the chart, other doctors’ medication changes/additions/deletions. Protect yourself. Keep a list on your computer, update it immediately after any change, print out the new list (at least 2 copies, one for you and one for any health professional), throw out the old.

6) DO be honest with everything you tell your doctor and other medical providers. The only way you can get proper medical care is if you tell the complete truth. For example, we know that 50% of our patients don’t even take their Plaquenil (hydroxychloroquine) regularly or use their sunscreen religiously every day. These are the two safest therapies for lupus. If I have a patient who is flaring up, and I assume they are taking their Plaquenil and using their sunscreen, my next step may be to add a stronger, and potentially more toxic immunosuppressive medication when this step may not be even necessary. If that person puts on their med list “Plaquenil, 200 mg tablets, 2 tablets 4 days a week” instead of “daily”, that lets me know immediately that we don’t need to discuss more aggressive therapy, we need to discuss compliance and how to help that person learn to take his or her medications more regularly. On your medication list, don’t write down what you are “supposed” to be taking, but what you are really taking. Another example would be the person who doesn’t have enough money to pay for their CellCept. He or she may only be taking it half the time due to expense and may feel too embarrassed to let us know. If your lupus is not under good control and this is the reason, we need to know. This honesty can lead to more productive discussions such as could there be a less expensive alternative, or could we put you into contact with some drug assistance programs.
This is how life works, isn’t it? Anyone who is old enough eventually learns that honesty is always the best policy (even when it is painful), as it almost always results in the best outcome in the long run.

7. DO consider downloading, filling out, and taking this form to each visit with your rheumatologist - The Lupus Checklist.

I hope this information is helpful in at least giving some insight into how to make the best out of your appointment with your doctor. Of course, communication is a two way street, and doctors need to learn to be better listeners as well. Unfortunately, you as the patient have no control over how good a listener your doctor is, but it is in your power to improve your chances of being listened to and getting the best results as outlined above.


Unknown said…
This is a great post, very helpful for not only lupus patients, but for everyone! Thank you Dr. Thomas and Despite Lupus-
Unknown said…
Thank you for the positive feedback, Molly. I hope that you and your mom keep up the wonderful work that you are doing to educate and fight for people suffering with lupus!.... Dr T
Sara Gorman said…
Thanks for reading, Molly!
Sara Gorman said…
Thanks for reading, Molly!
This is so helpful for anyone visiting a specialist. Thanks. I especially like the link to how to describe pain as it took me many years to get a diagnosis of my autoimmune condition and this would have really helped
Sara Gorman said…
Isn't that link helpful?! I just used the strategies listed at my most recent appt. My doctor totally "got it"! Thx for commenting.

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