What Makes a Disease Real?

By Robert H. Shmerling, M.D.
Beth Israel Deaconess Medical Center


Doctors can be a skeptical bunch. I have colleagues who flat out deny that a condition can be "real" unless they can observe it or detect it with a test.

Yet, many physicians deal with conditions all the time whose symptoms can’t be measured. For example:

  • Depression – A depressed person will usually have normal physical examinations, blood tests and, if necessary, a normal brain MRI.
  • Headaches – Most people who have headaches have normal test results.
  • Joint pain – People can have joint pain (arthralgia) without any joint inflammation (arthritis). The pain could be due to tendonitis, bursitis, vitamin D deficiency or thyroid disease. But often we can’t find any cause of the pain.

Doctors rarely do extensive testing for these conditions because abnormal results are rare and the tests are almost never helpful.

Millions of people are affected by diseases that have "subjective" symptoms and can’t be confirmed by observation or tests. These include fibromyalgia, most headaches (including migraine), irritable bowel syndrome. So, does this mean that these conditions aren’t "real?" They’re certainly real to the people suffering with them.

It’s All in Your Head

When a symptom can’t be explained, it doesn’t mean that it’s imaginary or due to a mental illness, psychiatric disorder or psychological distress. That’s what is implied when a doctor tells a patient, "It’s all in your head." At the very least, we should assume that the pain or unpleasant experience is real regardless of test results.

In the end, all pain is perceived by the brain. So, in a way, all pain is "all in your head." Yet there is a tendency to relegate unobservable symptoms to the realm of the psychiatrist. Never mind that a psychiatric disease is "real" even when imaging and blood test results are normal. If you’ve ever witnessed psychotic behavior or been with someone who is severely depressed, it is clearly real.

Unexplained symptoms could be due to a disease that hasn’t been detected yet. Ideally, doctors and patients should identify the cause if possible, rule out a dangerous condition, and treat the bothersome symptoms. And that’s true whether the symptom is measureable or not.

What’s in a Name?

We usually expect the doctor to make a diagnosis and recommend a treatment when we have a problem. It’s reassuring to know that your particular problem has a name. It means that other people have experienced it and that studies have assessed the effectiveness of various treatments.

Yet for many conditions, the name is only a label. It’s convenient to apply a name to a particular combination of symptoms, even though the cause is unknown and no clear-cut abnormalities can be found. Examples include fibromyalgia syndrome and irritable bowel syndrome. Assigning a name to symptoms can be reassuring but it does not make the condition more or less "real."

Focus on Improving Symptoms

There are times when even the smartest health care provider can’t come up with a logical, compelling or even reasonable explanation for a person’s symptoms. In those cases, it’s important not to get too focused on explaining or labeling them. Instead, the doctor should focus on:

  • Not missing some important clue
  • Treating the symptoms

In many fields of medicine, doctors spend all day improving symptoms rather than making a diagnosis. Headache specialists, for example, must be convinced there is no brain tumor, no meningitis, and no other serious and treatable cause of the pain. But once that happens, attention turns toward treatment rather than on sorting out a specific cause.

This can be frustrating for both patients and doctors. But until we understand the specific causes of common conditions like headaches, back pain, ringing in the ears (tinnitus) and chronic fatigue, controlling symptoms, not a name, is what will help the most.

The Bottom Line

Once again this shows that there’s more uncertainty in medicine than most people think. But that doesn’t mean a person is imagining their symptoms.

As I see it, debating the "realness" of symptoms is often a waste of time. Unless a person is deliberately "faking" symptoms (a rare event in most doctors’ practices), they are just as real as for those with an observable, measurable and testable condition.

Having names are nice, but they are not always helpful. All other things being equal, I’d rather have a nameless condition that’s well-treated than a definite, but untreatable diagnosis.


Robert H. Shmerling, M.D. is associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School. He has been a practicing rheumatologist for over 20 years at Beth Israel Deaconess Medical Center. He is an active teacher in the Internal Medicine Residency Program, serving as the Robinson Firm Chief. He is also a teacher in the Rheumatology Fellowship Program.



Comments on: "What Makes a Disease Real?" (4)

  1. I like this guy.

    “As I see it, debating the “realness” of symptoms is often a waste of time.”

    This is a guy who can see the broader picture.

  2. sistertocommonsense said:

    I too like this guy.

    In may cases with patients who have pain, let’s say that pain is a subjective experience, but if you are an in tune practicioner you can see pain in a patient by some indicators, sweating, palor, increased heart rate and blood pressure, ect.

    I my case I have seen real things emerge from the skin, that is not just subjective (being claimed by the patient from their perspective) but it is also very objective, on my part.
    Some people have no ulcerations but can have tracklike marks on their skin almost like slits that just appear, tunneling looking things under the skin that appeared to move before my very eyes, dashes, dots, rashes and spots that come in very bizarre patterns.

    I don’t know if it is a gift that I see this in people or a curse. Sometimes I question this again and again, Why was I given the sight to see this in others objectively.
    But seeing this takes time with the patient, sitting with them, really looking at their color, skin texture, small bumps and lumps and sometimes large ulcerations which many do not have.

    It seems that I am getting to where I can hear is in their voices on the phone Kixx, the brain fog, word salad, lack of being able to put sentences together and they they describe the things that they have seen, that I have seen on some of my sickest patients.

    Sometimes they are so Brain Fogged that I have to get them off the phone after 2 minutes because I know I will not be able to get through to them even if I took hours on the phone, they are too far out and we can’t save them all.
    My suggestion is that these people need a family advocate if the family believes them in regard these bizarre manifiestations.

    Trying to convince Doctors that this is real and arguing it’s reality is often a lesson on futility. I have spoken to many Doctors and they are just too busy to listen or just blow me off as another crackpot in the world of medicine.

    I have been able to explain this to my husband but he is a “captive audience” and has had to listen to me talk of this for years, he has been in Medicine for going on 40 years and I have marched some of the sickest patients into his office to show him just what this looks like. He better listen to me, because the past 5 years I have been consumed with this and just wanting to understand. He is a gentle compassionate man and now he is recognizing that some of his patients could have this when they begin to talk about these rashes they have had, crawling and biting and what Dermatology has done to them. Then he has the “AH HA” moment, I think I better send this person to my wife, or try to explain to them that they have a problem probably of toxicity.

    The easiest way to explain this to him is by using the Rotting Log analogy and also the analogy it that “the people who have this are just a reflection of what is going on in our Environment, toxins in food, toxins in water, skin care, drugs, heavy metals being dumped in and on our environment, heavy metal in our mouths ect.”

    Also telling him that the Gut feeds the blood, the blood feeds the brain, bones, everything in the human body. If we didn’t have blood we wouldn’t have a heart, lungs, blood vessels, everything. The blood carries the oxygen to tissues and every living organ in the body. The Gut FEEDS the blood. I love the theories on Beauchamp and Andre’ Quinton now, had it not been for this “syndrome” I would have never read or even learned about their theories.

    Something My Husband also told me last night….”Do you know in Medical Training we only got 1 week in Dermatology, and about a month is Psychiatry, if that and no training in Nutrition. I was trained that the skin was a great indicator of what is going on with the internal organs, the skin was always my forte’. I am so glad I opted out of Residency and Internship and becoming an MD when the voice of my self said, “This is not what your about and you will never be able to be made to think like an MD.”
    It would have been like putting me in the Military, I would have been booted out the first month.

    So…in summation…I don’t argue with Doctors any more. I just try to do what I do, one person at a time, one day at a time and one by one we create an army of healthy soldiers.
    Sister to Common Sense

  3. sistertocommonsense said:

    This is a version of the Original Hippocratic Oath, next I will post the Modern Version. Note that this is when women were not permitted to be physicians. Not Dietitic in the verbage.


    Sister to Common Sense

  4. sistertocommonsense said:

    Note the below is the Modern Version, on the above version I meant to say note the Dietitic portion in the verbage of the old Hippocratic Oath.


    Sister to Common Sense

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