Why can't doctors admit it when they don't have an answer?

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How sad that Summer Stiers, the young woman suffering from an as-yet uncategorized illness who was profiled so heart-breakingly by Robin Marantz Henig in the New York Times Magazine, has died. At least she ended up at the National Institutes of Health where the doctors tried—unsuccessfully—to puzzle out the reason for her many medical maladies.

One of my daughter's favorite shows is Mystery Diagnosis, which presents the story of someone with strange symptoms who goes for years without being able to get a diagnosis. Inevitably, during the course of their search, a doctor, or doctors, tells these patients that their symptoms, from nightly vomiting to loss of consciousness, are all in their heads.

This, too, happened to Summer Stiers, as Robin writes, even though she ended up with kidney failure and loss of eyesight. These difficult patients are told they should just see a psychiatrist, pop some anti-depressants, and leave their busy internists alone. Both the Washington Post and the New York Times have regular features that describe the quests of people with anomalous symptoms to get help. These accounts are full of dismissive doctors who tell the patients there's nothing wrong with them. I have great respect for the medical profession and understand that doctors are under constant pressure from all sides. I'm sure there are patients who are physically fine and suck up busy doctors' time. But over and over I've wondered why it is that doctors, when they don't know what to do, can't say to suffering people, "I'm sorry you're going through this. There is something wrong with you, and right now I don't know what that is. But I will do my best to find out."

Photograph by Getty Images.

Tags: chronic fatigue syndrome, health, medicine, new york times, summer stiers

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Comments

No Answer

By: Mr. Magoo | Wed, 12/16/2009 - 01:14

As an internist, I can assure you we tell patients we don't know what is going on with them far more often than we would like. From a medical standpoint, this is not at all surprising given the complexity of the human body and our relatively simplistic understanding of disease processes. As one reader pointed out, the key is not to give up on our patients. Our responsibility is to support them at all times. Sometimes this means sending them to a variety of specialists; other times, it means simply letting the patient know you believe in them, even if others do not, and remaining open to all diagnoses.

As an aside, from a medical standpoint, telling someone their illness is "in their head" is not necessarily being dismissive. Given the essential mind/body connection in all of us, it would be irresponsible not to consider psychosomatic causes for part of all of any illness. The trick is to keep an open mind as to other causes, even if a psychosomatic cause is most likely.

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It's been my experience

By: geml | Thu, 07/09/2009 - 18:47

It's been my experience that doctors tell patients far more often than not that they don't know what is going on, and they don't know how to make it better.

What's perhaps more unnerving is that most people I know who have been told that have spent years of their lives searching for "the answer." They've gone from one doctor to the next, one specialist after another, looking for someone to tell them what they have and how to cure it. Many have spent all of their lives focusing on their sickness, instead of living their lives, impaired as they might be. Many would rather, I think, be lied to be doctors (and pony up everything they have financially) rather than realize that they may be facing a life without their full portion of health.

The Stiers story is notable because she died. But millions of people go to thousands of doctors every day only to be told that no one really knows what they have or how to make it better.

Doctors admit they don't have

By: Mayah | Thu, 07/09/2009 - 17:19

Doctors admit they don't have answers all the time. It just doesn't make a good story. People like their mysteries to be solved. Noone wants to hear about the person with vague symptoms with an unclear cause who went through extensive testing and various treatments and never had any success with either.

What if Dr. House ended an episode saying he had no idea what the cause was, didn't feel that there were any additional tests that would actually be useful, and planned on just treating the symptoms as best he could?

I'm pretty lucky and I know it.

By: Sihaya | Thu, 07/09/2009 - 16:16

I've been through something like this as a very young child, only my doctor *was* compassionate, and he kept referring my mom to specialists and chatting to his other doctor friends about my problem until, about three years down the line, it was solved. My doc retired a few years ago. I'm sure that some young practitioners have learned something from him, and I'm sure his wisdom remains part of the medical profession. There are sympathetic doctors out there.

Summer Stiers story sounds a lot like my story...only I'm fortun

By: ddecker | Thu, 07/09/2009 - 18:50

Summer Stiers story sounds a lot like my story...only I'm fortunate enough to still be around! It took me so many years to get on the right track with a therapy that actually is helping me recover now, albeit a very slow recovery.

Let me tell you what has and hasn't work for me. I've had seasonal allergies and low energy all my life. I was diagnosed with asthma during my teen years and placed on antihistamines and steroids for these conditions. I was told by a doctor in my teens to stop wasting my parents money and time when I complained of bone pain and shortness of breath when I climbed stairs at school. He told me it was just growing pains nothing to worry about when he could find nothing wrong with me.

My symptoms would improve occasionally then worsen. With each passing year it seemed like I just kept adding on new and different symptoms. I thought I was doing everything I could to lead a healthy life such as taking my prescription medications and taking vitamins everyday... but I did not improve, in fact more health problems began to occur like chronic fatigue, FM, migraines, leaky gut syndrome, heat/ sun intolerance, etc... (the list of conditions goes on and on).

Dietary modifications helped when all I was dealing with was seasonal allergies and migraines in my late -20's. At this time I was overweight and felt miserable and tired all the time. Trying to workout at the gym made my heat race and I would feel worse than I did before I started. I decided to stop taking all steroids medications, vitamins and I stopped eating all flour, dairy products and foods containing artificial sweeteners as well as high fructose corn syrup. I ate mostly fresh organic foods. After about 3 months on this diet I became very ill and for 10 days I was flat on my back in bed and could hardly move or even breath. I realize now that this illness was actually a Herxheimer reaction (HERX) which is a very strong immune system response. This HERX reaction occurred because of the dietary changes I had made. When I recovered from this episode I felt better than I ever did in my entire life, including during my childhood years. Over 6 months I lost 20+ lbs and felt pretty good... for a while when I could follow such a strict diet. But I could not sustain this diet for more than a year; it was very difficult to follow and so old food habits crept back into my lifestyle and once again I became ill with many new symptoms...chronic fatigue, FM, migraines, leaky gut syndrome, heat/ sun intolerance, etc...

I was placed on cortisone therapy my fatigue which I was told by my doctor was caused "low adrenal function" and started on nutraceutical foods and dietary vitamins and supplements including magnesium shots. Again these helped improve my energy levels for a period of about 6 months, but I added 20+lbs weight again from the steroid therapy. Again I felt ill and had many old symptoms return...

I was tested for Vitamin D deficiency and started on vitamin D supplementation based on my "low" 25-D level. This helped initially (*Now I know this was just a palliative effect, much like the palliative effects of cortisone therapy) then after about 10 months of Vitamin D supplementation I developed hypervitaminosis D and my whole immune system collapsed.

Again I started looking for more answers into why my health was deteriorating, I was only in my mid-30's why did I feel like I was dying! I finally found the information that was key to understanding my health problems when I found new research that was being conducted by Trevor Marshall, PhD at the Autoimmunity Research Foundation. Trevor Marshall's research taught me that there is mounting evidence that infectious disease and autoimmune disease are really the same conditions; that both are the result of immune suppression due to excess bacteria and excess dietary vitamin D intake which eventually results in inflammation in the body. This occurs gradually over one's lifetime.

Through his research Trevor Marshall developed a therapy protocol to help treat this inflammatory condition. I can happily report that in the last year and a half since I've been following strict vitamin D avoidance in my diet along with taking the medications used for this treatment protocol that I have seen a lot of improvements in my health including losing 20lbs again! Looking back on the dietary changes that I tried in my late 20’s I had part of the puzzle to my health problems figured out. I just didn’t realize it at the time that by avoiding dairy products and most processed foods I was avoiding vitamin D.

This therapy I’m using now is not for everyone. First of all, it takes a long time to achieve recovery and second because it can be quite a challenge to stick with the therapy! I'm not cured yet, in fact I sill have a lot of healing to do, but I can say am well on my way to recovery. Anyone interested in finding out more about the research of Trevor Marshall can do a google search for the word “bacteriality” on the web. There’s a lot of new information that is relevant to disease processes now available because of the human and bacterial genome research projects. The only unfortunate thing is the lag between scientific discoveries and medical practice.

This is what happened to my

By: zeureeka | Thu, 07/09/2009 - 13:41

This is what happened to my mother, over and over again, when I was a little girl. She was later diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and severe migraines caused by horomonal imbalances, and has undergone all kinds of treatments to combat her symptoms.

The other commenter may not have encountered much of this behavior from doctors, but one of my earliest clear memories is of my mom crying to my dad, after I was supposed to be in bed asleep, about how yet another doctor told her the pain and the fatigue were all in her head and all she needed was more exercise when she could barely get up the strength to get dressed and leave the house.

There's more of this out there than people think or want to admit, and sometimes just hearing, "I don't know how to help you," would make a world of difference.

they do, it just doesn't make it on TV or in the NYT

By: im1 | Thu, 07/09/2009 - 11:40

Doctors say this stuff to patients ALL the time. Since it is what they are taught to do and say, it is not news. I mean come on, news alert: "compassionate doctor comforts and empathizes with patient while admitting he/she is also frustrated to not have a clue what is going on with patient."
Not exactly something I'd tune in for.
The only reason I hear stories of doctors doing these things is that it is impolite to tell your husband and friends that their stories of being compassionate aren't that entertaining.

Why Can't Doctors Admit it When They Don't Have an Answer?