October 8, 2008

In Praise of the "Difficult Patient"

An essay originally published in the journal Health Affairs and reported in Science Daily last month raised an issue that needs a lot more discussion both among us folks with diabetes and within the community of doctors who treat us.

The report is here: Science Daily: Survival Instincts Propel 'Difficult Patient' To Insist On Quality Care.

"Difficult patients" turns out to be patients who do not accept mediocre care from unconcerned doctors. They are patients with serious symptoms who want a better diagnosis than a shrug of the shoulders--patients, in short, who demand that doctors do the job they are being so very well paid to do.

Doctors loathe these "difficult patients." They are quick to label any patient who challenges the level of care they receive with an unpleasant psychiatric label. One such label is "hypochondriac." This term is used to describe a person who imagines they are sick when they are not. If you are labeled with this label, your chances of getting decent care from the doctor applying the label drops to zero.

Many of you have been labeled hypochondriacs. I certainly have. Around the time I discovered my blood sugars were extremely high, I had a doctor who told me that blood sugars that rose into the middle 200s after every meal were "nothing to worry about" and that it was "obsessive" for me to test my blood sugar after eating. Because she refused to diagnose me correctly as having diabetes, I was unable to get any insurance coverage for the blood testing strips I needed to start learning how to control my blood sugar.

Fortunately for me, by the time this happened, I already had a lot of experience with mediocre doctors whose misdiagnoses had hurt both myself and my kids. I was also lucky enough to stumble upon Dr. Bernstein's "Diabetes Solution" book, which made it very clear to me how abnormal my blood sugars really were. So I found different, better doctors and have pushed them ever since for the treatments I needed to keep my blood sugars in the healthy range.

But most of my first doctor's patients who had blood sugars like mine probably were relieved to learn they were "fine" and did not take it any further. I'm sure that the doctor liked them a lot more as patients than mine do. But I'm also sure I'm in much better shape a decade later.

I'm far from being alone in this. Many of you have written to me about doctors who refused to diagnose you, even when you had demonstrably abnormal blood sugars. You write me about doctors who refused to refer you to specialists when they were clearly out of their depth dealing with your diabetes. And many of you complain about doctors who implied that you were a bit "mental" because you won't settle for an average blood sugar of 180 mg/dl and an A1c high enough to guarantee complications.

Now a study published in a psychology journal, Psychosomatic Medicine, quantifies the damage done by doctors who write off "difficult patients" as hypochondriacs.
Anxious Temperament and Disease Progression at Diagnosis: The Case of Type 2 Diabetes

To fully understand this study, you have to understand that the term "anxious" when applied by a psychologist is a loaded word which suggests that the patient is not mentally healthy. If you are diagnosed with "Anxiety", most psychiatrists will prescribe a powerful psychoactive drug. In addition, it is one of those diagnoses which is much more likely to be applied to females by male practitioners.

What this study found was that "anxious" patients had much better A1cs at time of diagnosis than did those who were supposedly more well-adjusted. As Diabetes in Control (who had access to the entire publication, not just the abstract) reports, "those with more anxious temperaments were diagnosed at an earlier stage compared with their more relaxed peers. The relationship was particularly strong among younger people, who do not normally undergo routine screening for diabetes. The patients who were diagnosed early were also more likely to have better control of the diabetes, regardless of their age."

Lower A1cs translate into fewer complications and heart attacks. This is good. But the doctor who dismisses the "anxious" i.e. concerned patient--often female--as a hypochondriac will miss the diagnosis in these patients or will ignore it, depriving them of the care that could help them keep those A1cs low over time.

So here's a thought to keep in mind: if your doctor only diagnoses or treats diabetes in patients who arrive in his office with neuropathy and retinal changes, who are peeing all the time and losing weight because their blood sugar is always above 300, you would do well to be as anxious as possible. And you should also do what you can to make sure that kind of mediocre doctor continues to think you are a hypochondriac, because the only time that kind of doctor will take you seriously is when his poor doctoring has led to your developing undeniable diabetic complications.

Many people with diabetes who were not sufficiently anxious get their first diabetes diagnosis in intensive care, after their heart attack. Even more tragically, some get that diagnosis when they suffer a serious wound that won't heal, which may even require amputation.

You do not want to be one of those people. It is much better to be labeled "Difficult" or "Anxious." And it is even better when you have been labeled (and treated) that way to find a new and better doctor who will work with you to make sure that you never develop the complications that make diagnosis so easy for out-of-date doctors.


Anonymous said...


I chuckled reading this post. I told the new primary care physician I saw a few weeks ago that I can be either one of a doctor's "best" patients or worst nightmares, depending on how the he views patients who want to understand everything about their health and healthcare. He was quite receptive and said we would make a good team - phew!

You probably know this, but not everyone does, but it's always a great idea to fill out a medical release form at the receptionist's desk before or after *every appt* (or at least regularly, such as once or twice a year), to get a copy of your own health records mailed to you, including the consultation notes and any treatment or medical procedure notations (patients don't even have to mention this request to the doctor, either, if that makes them uncomfortable). My network has MRFs online; I can print out the pdf file at home, sign it, and mail directly to Medical Records, too, bypassing the doctor & office staff entirely. There may be a small fee for the clerical labor and per page copying, but it is well worth it (my network bills me for the fee - it was $45 initially to get about a decade's worth of records - extensive file because of two infertility investigations and gestational diabetes - but now it is a just a very small charge for a few pages at at time).

Many people think it is enough to get a copy of lab reports. It isn't. Patients have a right to their doctors' notes, too, and can also catch filing errors this way (errors do happen - I found four other patients' reports in my file! - who knows what could be missing from my file).

I've always found it interesting to read my doctors' interpretation of my visits. I learned that one doctor really only paid scant attention to my significant symptoms of hypothyroidism (the symptoms that prompted my visit) and focussed more on the very minor ones she could treat with a symptom-reducing drug, like cortsone cream for exzema (she was missing major problems like hypothryroidism, hyperglycemia, and significant pelvic organ prolapse because she attributed most of my symptoms to "getting old" - I was 44 yo! and pre-menopausal- I no longer see her, of course).

I also learned the Ear, Nose, & Throat specialist I went to a couple times for a nosebleed problem didn't believe that the nosebleeds came on without provocation. They would come on suddenly during late winter-early spring, often after some sudden sneezing, then go away the rest of the year (occurred three years straight, so he finally cauterized the enlarged blood vessel, which stopped the nosebleeds). Turns out he really thoughtall along I was just picking my nose and causing an injury! I can understand that picking one's nose can cause a nosebleed, and it would re reasonable to consider that possibility, but I specifically told him that wasn't a possible cause in my case. So now my file indicates I pick my nose to the point of injury. Nice.

Years ago, I had a roommate who was in medical school. She used to "practice" some of the things she was learning on me, and we had lots of discussions about taking medical histories, etc. MDs are taught at the earliest stages of their education to not trust the patient very much, because either the patient is lying, isn't "compliant" and doesn't want to admit it, or their memory or understanding is just not reliable. In other words, they are skeptical of the patients until proven accurate by other means. It's really pretty outrageous at some levels. Reading the doctor's notes is a good way to find out how many of your own doctors took those lessons too seriously and always doubt patients and which ones listen to patients with due consideration.

Jenny said...


I have seen copies of my doctor appointment records and they can be scary reading.

Years ago a doctor wrote in my medical records that I was mentally ill because I refused to have the hysterectomy he ordered when I was 38. I'm 60 now and still have the womb I fought for back then. It hasn't caused me a day's worth of trouble.

I found out about that because it became the basis on which insurance companies refused to write me an insurance policy until I moved to Massachusetts. In Connecticut, if a doctor has told you that you should have surgery, even if the doctor is completely wrong (and the reason he was recommending the hysterectomy has been completely discredited), you become uninsurable.

Anonymous said...

It took almost 2 years to be told I had type 2 diabetes! For a year, I had horrible leg pain and was told I had "Restless Leg Syndrome."I was put on a pill called requip that almost killed me. I landed in the hospital with double vision and was posting fasting blood sugars of over 147. I was STILL told I don't have diabetes. I finally found a Dr who did catch it, but the damage was done. I have neuropathy and microvascular disease of the eye.

Anonymous said...

I was told to see an eating disorder therapist because, on being diagnosed with diabetes, the only way that I could get my BS down to acceptable levels was to walk and eliminate most carbs...and that didn't even work! I lost 10 pounds, ending up at 114. I was petrified but smart enough to know that my A1C was too high. My partner, who to this day seems to act like I am blowing things out of proportion, told my practitioner that I had extreme anxiety in grocery stores (mostly caused by financial issues)...I mean, the advice given to me at first was simply stop eating white bread and sweets! I still feel on some level that I am being labeled as obsessive-compulsive about my eating. Well, a determined diabetic MUST obsess on some level about what they eat and must test regularly! I continue to be appalled at the ignorance by the "establishment" of how to treat diabetes.

Boz said...

Funny you should post this topic. A couple of weeks ago, an ortho surgeon gave me a cortisone shot in my knee. I new after the last shot, back in may, that my glucose would go up a bit for a few days. Wrong! It went over 300 for several day and wouldn't come back down. My doctor told me to be patient. My nueropothy was getting very bad, vision burring. I called my diabetes nurse, who ordered agressive insulin treatment post haste. Following up with endocronologist show my pancreas has basically shut down. The insulin has worked to perfection, my readings are better than ever. I go on the Omni Pod next week.

The endo thinks I was was not truly type 2, but adult onset type one. Any thoughts?

Jenny said...


Sorry you had to become another victim of cortisone. I blogged about the dangers of cortisone last year. Beware Cortisone.

A course of prednisone pushed me from Pre- to full-fledged diabetes.

I don't know if that's proof a person isn't a true Type 2. The only way to know if you are Adult Onset Type 1 (LADA) is to test for the antibodies which point to autoimmune diabetes, though lately I keep hearing from people whose endocrinologists are telling them they have LADA without the positive antibody tests.

The important thing, though, is that this means that unlike the case a decade ago, these people, misdiagnosed or not ARE getting the correct treatment for their diabetes--insulin.

Boz said...

Jenny - thanks for the response. I will be getting further testing next month to be certain.

Anonymous said...

I think doctors (and many others) might consider some questions just silly. I have diabetes, although in a mild form now. I was diagnosed with diabetes about four months after a bout of chicken pox. I have a family history of diabetes but I have a strong suspicion that my case of diabetes is somehow related to the chicken pox I had. My doctors will simply brush aside any such link, and instead would point to my family history of diabetes (father, grand parent, siblings etc.). But I have also older and younger siblings who DO NOT have diabetes. Perhaps some day in future it will be noticed that diabetes can also result from some illnesses one contracts in this journey of life.

Anne said...

"What do you expect, you are getting old." That is what my PCP told me when I described how horrible I felt at age 59. He had no interest in exploring how to optimize my health. I wonder how many of his patients have heard the same diagnosis.

I never did find any help from the local medical community. The internet allows me to be in contact with the collective knowledge of so many people and with doctors who think outside the box. I can also access journal articles that were once only available to my doctors.

I now have doctors who are willing to work with me in optimizing my health. One example is the long ignored elevated blood sugars that are under control with diet. The doctor who refused to test my A1C is long gone. Yes, I want to be a part of my medical team.

Oh yeah, my worst symptoms were related to gluten sensitivity. At 65 I feel younger that I have in many years. I really need to write a letter to the doc who told me there was no hope as I was old.

Lili said...

What's amazing to me is they will use any excuse. If you're overweight all your problems are "you're fat." If you're over 35, it's because "you're old." If you're younger, it's because "you're crazy." I've trailed many doctors in my wake because I don't get along with the type who make a face when you say you read the PDR and discovered a fatal interaction on your own - for the record, she responded, "well, that result is rare" and wouldn't switch me to a perfectly acceptable (and cheaper) substitute.

I've already mentioned the insanity of my diabetes diagnosis. As Anna said, my record was a revelation. Endo #1 (aka The Quack) had basically pasted half the record from that of an average Type 2 patient...which explains why at every visit, he'd ignore everything I said, look at the notes, and say, "no, you're a typical Type 2" and then send me home with nothing. Problem was, none of those things to me.

Anonymous said...

I am both a physician and a diabetic. I read this blog and generally find it useful. From the doctor's point let me describe what I mean by a difficult patient:

someone who makes an appt and does not show up or call to cancel;

someone who wants copies of lab reports and then gets upset about slightly abnormal labs that are of no significance -such as a white count of 3.4 when the normal is 3.5;

someone who comes for a second opinion after being evaluated by one or more other doctors and brings along no records of prior lab tests or x-ray;

someone who habitually comes late for appts;

someone who does not pay the bill.

Anonymous said...

I think the whole pre-diabetes tag is a dangerous misnomer. A lot of people who are "diagnosed" with this are not bound to take this seriously. Abnormal is abnormal and should be treated as such.

Anonymous said...

Oh boy does this ever push some buttons!

Beyond "hypochondria" is "Personality Disorder": one of the symptoms of narcissistic personality disorder is a belief you have some rare illness which can only be treated by top experts.

Well what if you actually DO have a rare illness? That's what top experts are there for after all.

Some "rare" illnesses aren't actually rare, us skinny Type 2s may be "rare" compared to the overweight ones - but we outnumber Type 1s by a factor of 2 or more.

But what about people with Cold Agglutinin Disease? Pyoderma gangrenosum? A combination of heart and kidney failure and a funky response to digoxin that confused the country's top cardiologists? The people I know actually *do* have these diseases, one has to wonder how many more were simply written off as "neurotic" or worse.

There's also a reverse factor, some of the symptoms of hypos (reactive or otherwise) come from a dump of neuroendocrines including epinephrine norepinephrine and cortisol, all of which are involved in "anxiety" and other "mental" illnesses, the symptoms of which obviously improve with dietary control if you have a doctor willing to look for a cause rather than write you off.

I agree also that looking at your own notes can be very instructive. Apparently I am a homosexual and an intravenous drug user. Now I don't know if that was a cynical attempt to put me into two morally corrupt groups *and* divert attention away from my gallstones and towards hepatitis (in which it succeeded)or a genuine case of someone else's notes being mixed in with mine. Either way I might never have known or been able to correct this, and it may have continued to influence my future treatment (and possibly that of the homosexual junkie who may have ended up with *my* notes)

Doctors always go up in my estimation if they are prepared to admit they "don't know" because that can be the first step to finding out, or if they are prepared to forward you on to a specialist for conditions they don't know ebough about themselves

Here's another symptom of Narcissistic Personality Disorder: an unswerving belief in your superiority over your peers and an inability to permit evidence to change your beliefs. Does that sound like a few doctors you may have met?

Suzanne Lanoue said...

Wow, I thought my doctors had been bad...I am really enjoying reading your blog. It is very informative.

Mel said...

slightly off topic, but I just read the Science daily article and clicked on the link to Michelle Mayer, the "difficult patient's" blog, and see that she has passed away from her disease Oct 11, her 11th wedding anniversary.

Jenny said...


I had just read the post yesterday about Michelle's tragic death. I was thinking of commenting on it, but did not mostly out of a sense of respect for her family's privacy.

Anonymous said...

This article has confirmed what I fear.
As a newly diagnosed Type 1 and what I consider to be a fairly educated person capable of aborbing information, making choices and understanding what I read, I find that my attempts to challenge points of view are inevitably met with a patronising response that make me feel like Im just being a bit silly.
Without sounding too disrespectful to my GP or DSN I doubt they have spent as much time as me recently researching the condition and a once per year refresher conference funded by the NHS (if indeed they do that) is not a substitute for ongoing learning.0Its a chronic illness for goodness sakes. What if DSN from the 70's didnt bother keeping up with changes then we'd all still be boiling our syringes!!
It's been commented on that I have gained control too quickly (not my idea of control) and I perceive that my health care team find me over zealous and probably unrealistic. EG, they have refused to change me from mix regimen to basal bolus, they discount my concerns about post meal sugars being way too high.
Due to continuing to feel ill (foggy, lightheaded) I have INSISTED on additional blood checks to check for associated other autoimmune problems (thyroid etc)but so far no one can tell me why I still feel so crappy

I commenced my discussion on this date with my GP saying that I understood some of the symptoms(lightheaded, etc)were associated with anxiety but that any anxiety was reactive to ongoing physical health problems - not in and of itself. I did this in order to avoid the all too easy attempts to palm off real concerns with imagined concerns. Furthermore, on this point, if it is related to MH difficulties then where are the resources to tackle this? Tablets are not enough. There must be lots of incidences where people who just cant cope with being diabetic just ignore it or dont manage it, not because they dont understand but because they cant. These people are also seem as difficult patients Im sure. I work with medics and the words 'non compliant' are bandied about constantly to explain failures in treatment. The question is, whose failed?

My GP once joked to a student that i dont visit her very often (well, didnt.....) but when I do I already know what is wrong with me. She did admit i was usually right (inc Diabetes btw)and that comment made in jest and good nature has now had me doubting whether it was as amiable as first thought.
Being a difficult patient is difficult irrespective of how well informed or sensible/bright you are because the starting point of the medics mainly is one of expertise, not sharing of the care.

This feeling of being disempowered must contribute to feelings of hopelessness and depression Im sure - and given the link between diabetes and depression, maybe they should set their medical, pathological model aside for a minute and look at the person as a whole.

They might just learn something.

RIP Michelle Mayer - thoughts are with your family

Anonymous said...

Dear Everybody, specially Jenny
Finding this wonderful space on the web has brought me such COMFORT!! I thought I was the only "difficult patient" in the world and that my first endocrinologist was the only kind that existed - she always looked at me with disgust (because my blood sugar was always over 300) and treated me like a sinner, liar and disobedient child, would not explain anything to me because I was too dumb to understand, would look at me with disgust when I would tell her about my reading on diabetes, refused to test me for antibodies because, as she assured me, there is no difference between type 1 and type 2 diabetes, would not change my insulin treatment and only wanted to use lantus, no boluses) Obviously, after going through agony each time I had an appointment with her, I decided it was time for a rest. I was diagnosed with type 2 diabetes in 1998 - my sugar was at 600, my leg muscles cringed and hurt when I went down the stairs to the subway to go to work, I was thin, terrible thirst, lots of urination, lost about 20 lbs. in 3 months time - my general practioner tried pills, diet, exercise which did not work. Ten years later, my second endocrinologist put me in the hospital, tested me with lantus plus boluses and diet. Things seem finally to be working. The miracle is that I have not yet developed neuropathy, retinopathy, my blood pressure is normal and my HDL is higher than "normal".

I am fascinated by and enjoy reading the personal experiences of all who write to Jenny's blog. WHAT A DISCOVERY. Greetings to all from Patricia

ADHD Diabetic said...

ADHD and doctors - I got a diagnosis of diabetes which was never relayed to me directly by the doctor so I didn't take the message seriously and moved very shortly after but I still mentioned it to my new Dr. and he told me there was no possibility that I could be diabetic at my age (27 at the time with a family history of type 1 and 2 and with a BMI of 30). So my A1c didn't get tested for another 3 years (again at my request with a new doctor) and found out it was 10.2 it turns out I'm type 1.5 and a little insulin has fixed it all but I've already suffered some kidney damage from it. I think it was my diagnosis of ADHD which prevented the doctor from taking a second look about the diabetes. ADHD is a bad diagnosis to get when dealing with doctors, particularly older doctors. I have a batchlors in physics and a PhD in biochemistry from an excellent schools and still they will talk down to me as if having ADHD meant that I was an idiot. The first time my Dr talked to me was after the diagnosis of diabetes. If you know someone with ADHD tell them to be extra proactive about their health care because doctors just don't take them seriously.

Jenny said...

ADHD, FWIW, what you experienced with ADHD is what most people experience with doctors if they are female. Totally ignored by all the research until very recently, symptoms discounted, and told everything is due to "stress", hormones, or menopause.

Also, you can reverse early kidney damage by normalizing your blood sugar. Cutting carbs carefully along with using insulin can do it.