Why we need truth in labeling of medical conditions

Labels matter. We quickly form judgments based on them. If we hear someone called lazy, the label “lazy person” attaches in our mind even though we may not have even met the person. The same is true for labels given to various medical conditions. If the label for an illness uses language such as “fatigue,” we abstract from our experience and think we know what it’s like to suffer from it.

Some medical disorders have been named after the researcher who discovered or described them in the medical literature (Alzheimer’s). Others are named after a famous patient (Lou Gerig’s disease). The result: instant legitimacy.

The trend, however, is to name illnesses and pain conditions by describing their primary signs or symptoms. There may be sound reasons for this trend, but it can lead to inaccurate labeling of people and to unnecessary suffering by those who’ve been diagnosed with the disorder or disease.

For example, people with rheumatoid arthritis are frequently put into the same category as those with osteoarthritis—a common condition usually associated with aging in which the joints become painful and stiff. But rheumatoid arthritis is a systemic autoimmune disease. Joint pain and stiffness is just one of its many symptoms. The suffering of those with RA is often trivialized because they’re lumped together with those who have arthritis. People with RA are told it’s no big deal, and often have to put up with insensitive comments, such as “You’re too young to have aching joints.”

A second example. People with fibromyalgia (fibro: tissue containing fibers; myalgia: muscle pain) do indeed have muscle pain in their tissues. But anyone can have muscle pain if he or she moves wrong or overdoes it during a work-out. The muscle pain of fibromyalgia can be so debilitating that some people can’t move without excruciating pain. In addition, muscle pain isn’t the only symptom of fibromyalgia; yet, there you have it: fibro (tissues containing fibers) myalgia (muscle pain).

A third example. People with chronic fatigue syndrome do experience fatigue. But when those with this diagnosis hear others say, “I’m tired too,” they know that they’ve been labeled in a most inaccurate way and that the seriousness of their illness has been disregarded. They also know that the painful label “malingerer” may not be far behind.

Lastly, here’s the most absurd name for a disorder I’ve yet to encounter (readers may be able to top me on this—please leave a comment if you can!): Restless Leg Syndrome. I’ve suffered from this neurological disorder for over 20 years. Let’s see how accurately the label describes the condition.

Restless

When I get an attack of RLS, my legs aren’t restless. They are seized by waves of gnawing unpleasant sensations that are so unbearable, I’m forced to move my legs to try and get relief. After each wave, the sensations subside, only to return within another minute or two. This can go on for hours. When an attack comes at night (which is when RLS most often occurs), it is impossible to sleep. The result can be a sleepless night and one very long and unpleasant day ahead.

Leg

Sometimes I get these waves of gnawing sensations in my hands. Others get it in their arms. There’s nothing exclusively “leg” about restless leg syndrome.

Syndrome

I object to this label in general because it trivializes what can be debilitating suffering. RLS is a neurological disorder. It’s not a syndrome. Neither is so-called chronic fatigue syndrome.

This is the first time I’ve shared with anyone but my husband and my doctor that I suffer from restless leg syndrome. I’ve never even told my two kids. Why? Because the name is downright embarrassing. The FDA has approved two prescription medications for it—Requip and Mirapex. These are Parkinson’s drugs which, when taken in low doses, help prevent an attack of RLS.

You’d think that Federal Drug Administration approval of two medications for a disorder would make it legitimate. Not so. The labels “restless” and “leg” are just too silly. Last year, I heard a late night comedian make cruel fun of it, saying, “And now there’s a drug for restless leg syndrome. Come off it. Your legs are restless? Get a life.” Ironically, I only heard his comment because I was awake due to, yup, RLS.

So, I’ve come out of the closet: I have restless leg syndrome. On nights when the Mirapex doesn’t work, you’ll find me pacing the floors, willing to try just about anything to keep the unbearable sensations from continuing. No matter how cold a night it is, I put ice on my feet and calves; or I wrap my legs so tightly in ace bandages that I have to be careful not to cut off the blood circulation. Sometimes these home remedies help, but usually they don’t because they’re only effective if I catch an attack right when it starts, and RLS only wakes me up once it’s “up and running” so to speak. And that means I’m looking at another night of broken sleep.

Who comes up with these names?

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • http://www.bryantsstatisticalconsulting.com Donald Tex Bryant

    Very good defense of the true pain suffered by those with serious medical issues.  Seems like you have done a good job of cataloging the most common ones.

    • http://www.howtobesick.com Toni Bernhard

      Thanks so much, Donald. I’m glad you enjoyed the article. Warmly, Toni

  • AKMaineIac

    Another part of the problem is the tremendous amount of uncertainty in most diagnoses. Unless it’s a broken bone, there is always a possibility of a missed, or mis, diagnosis with many of the conditions people are facing. Then, once you have a diagnosis, what to do? Many things simply have no “cure”, and narcotic pain medication is prescribed, leading to a downward spiral of sedentarism and analgesic use to quell the pain. As the neurological system develops tolerance to the narcotics, it requires more of it to quell the pain.

    • http://www.howtobesick.com Toni Bernhard

      I’m not a doctor but my impression is that not everyone develops a tolerance to pain medication and for many people, it vastly improved their quality of life. I’m not speaking from personal experience as I don’t suffer from serious pain. Thanks for reading and commenting. Warmly, Toni

      • AKMaineIac

        Thank you for your warm reply. I don’t mean to malign something that may help someone to modify significant pain in the short term to allow them to grow well and not need such things. As a physical therapist, I’ve seen alot of patients’ lives ruined with the stuff and they didn’t truly need it in the first place. If a person uses narcotic pain medication regularly, they will develop a systemic tolerance to it.

        Additionally…  if Pavlov’s dogs can salivate in response to a bell, what makes anyone think their brain can’t manufacture one hell of a pain in order to get some more of that stuff they take when they have pain? Because there’s some folks in the world whose brains “really” like that stuff…   I’ve seen a couple of studies in some psych journals in the past pointing to a mechanism like this to explain addictive personalities and addiction. Why some seem so vulnerable and some don’t. How are we to know who is and isn’t?

        I wish anyone who suffers from this sort of thing nothing but the best and most dedicated care that looks to helping them to get themselves as well as they can be. It may never be “without pain”, nobody can promise that, but with hard work progress can be made.

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    Unless the pathophysiologic mechanism is known, it’s a “syndrome”.

    These words make a difference, the way “may” and “shall” makes a difference in the legal biz.

    Perhaps the term “akathisia” might be a better description of your condition?

    • http://www.howtobesick.com Toni Bernhard

      Evidently, there is a movement afoot to change the name of Restless Leg Syndrome, either to the name you list or to the name of the person who first describes it. Thanks for reading and commenting. Warmly, Toni

  • Lucy Hornstein

    On the one hand, you dissect words to ascertain (and then ridicule) their meanings, yet you trash a perfectly precise word, “syndrome”, because you don’t feel your symptoms have been given sufficient legitimacy. 

    Syndrome: a group of symptoms that together are characteristic of a specific disorder, disease, or the like.

    I agree that RLS is real (it’s a movement disorder), poorly named, and not well understood by the general public. Have you tried quinine water and/or iron supplementation, two non-pharmacologic modalities that can be helpful?

    Your point about RA and OA is well taken, but that’s about the only one. Chronic Fatigue syndrome has been pretty well discredited; Fibromyalgia is a poorly understood disorder of central pain processing. I agree that medical terminology can be confusing and even misleading at times, and that labels are not always helpful. 

    • http://www.howtobesick.com Toni Bernhard

      I hope by your comment, “Chronic Fatigue Syndrome had been pretty well discredited” you don’t mean that people like me who have, in effect, had the flu for ten years straight aren’t terribly sick. I agree that Chronic Fatigue Syndrome is not one entity. It’s probably three-four different illnesses or conditions and until some serious research money is allocated to try and figure it out, little will be done to help its victims. I urge you to read this short piece I wrote on the subject at Psychology Today: http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome

  • James Purdy

    I must have three conditions that are very easy for doctors to diagnose and label.

    Whenever I start with a new doctor (which is often), I immediately tell the doctor that I don’t want, and will not take, any drugs. I just want to work on lifestyle. After all, my health problems (diabetes, high blood pressure, obesity) are caused by lifestyle, so it seems reasonable to me to expect that they can improve with lifestyle changes. 

    Not so, say the doctors, who ignore what I just said. They diagnose me as a “non-compliant” patient, and they print a bunch of prescriptions that I just throw away in their trash on my way out.

    At my next visit, they ask, “Are you taking your medications as prescribed?” I sigh and tell them again that I do not take medications because I want to work on lifestyle. The doctors then make two more diagnoses “crazy” and “suicidal.” 

    So, I’m labeled “non-compliant,” “crazy,” and “suicidal,” just because I want to work on lifestyle?

    At that point, I have a label for the doctor: “my ex-doctor.”

    A couple years ago, doctors insisted that I needed a leg amputation and quadruple coronary artery bypasses or I would die very soon. I refused the surgeries, and I went to work on lifestyle. The leg healed, and the chest pains stopped.

    I don’t know why I even bother going to doctors.

    • http://nonmaleficence.wordpress.com Nonmaleficence

      I’m sure your “ex-doctor” is just as glad to call you his is “ex-patient.”

    • Anonymous

      I hope, one day, you’ll find a doctor who’s willing to compromise, work with, and take the time to explain etc. It can be about lifestyle.  But, there may be lasting damage if your sugars aren’t under control in the mean time.  If your body’s grown resistant to the insulin it produces, it would also be increasingly difficult to reverse the natural course of Diabetes and Hypertension and etc.  And, that’s what your doctors are worried about. 

      Cheers to lifestyle changes~

    • http://twitter.com/USMCShrink Kevin Nasky, DO

      If you don’t want any medicine, why do you go to a physician? Seriously, there are far easier sources of information on lifestyle changes to benefit various conditions. Your local bookstore likely has one or two aisles on disease-specific books on how to manage xyz condition sans medications. I don’t mean to be insensitive. I really don’t think it makes sense to seek the care of a physician if you’re wholly unwilling to subsribe to current medical guidelines for management of whatever illnesses you have. Your doctor HAS to try to recommend standard of care treatments. You have put him/her on the hook for that when you became his/her patient.

      Here’s my thought: some patients, for reasons too lengthy to go into here, enjoy conflict with their physician. Every doctor has a a few of these on his or her panel. Some people just want to “fight it out” with their doc at every turn. James Groves described “self-destructive deniers” in his famous 1978 “Hateful Patient” NEJM article, which is always worthy of a re-read. Enjoy:

      http://www.psychresidentonline.com/NEJM%20Taking%20Care%20of%20the%20Hateful%20Patient.html

    • Michal Haran

      You are right, if physicians keep on blaming their patients that their diseases are not well-controlled (or have occurred in the first place) because of their lack of making proper life-style changes, than the other side of the coin is for patients to blame their patients for not guiding them regarding what those changes should be. 

      The sad truth is that unless you have extremely unhealthy habits, most likely your illness is not caused (and therefore can’t be healed) by altering your life style habits. 
      A “non-compliant” patient is a patient that was not given proper explanation as to why he/she should take a certain medication. Every medication has potential side-effects and discomfort, so the patient should feel the potential benefit exceeds it. 

      I am sorry that you had such experiences with your physicians, even though you have potentially treatable (even if not curable) diseases. 

  • Michal Haran

    What I think about the paper you cited is that it was written by a burnt out physician (and we all have those times, because medicine is a very demanding profession), who instead of taking some time-off decided to blame his patients for his inability to continue working according to his standards. 

    The example he gives (with labels which are much more damaging than RLS of CFS), are extremely superficial . For example: we know nothing about this 51 year old attorney, other than what is implied- that it probably took a very long time and multiple frustrating (and possibly humiliating) encounters with his physicians, until the proper diagnosis was made. 
    We know nothing about the dancer, and we know nothing about the kind of answers she received from her physician when she “nagged” him. Possibly her concerns were not properly addressed and instead of recognizing and alleviating her fear of death it was ridiculed? Possibly the next resident received some “information” about her from her previous physician which influenced the way in which he treated her?  
    And denial with continuation of unhealthy habits? How many physicians smoke? including those that have seen and taken care of patients with severe COPD? 

    It is true that we all have times in which, as physicians, we are just tired of hearing about the miseries of other people, we are tired of encountering their (understandable) anger, frustration, fear and hopes on a daily basis. We are tired of having to constantly find the way to give them the best medical treatment and supportive care. 

    But, that is because we too are just people, working in a very demanding environment, and with (many times) unrealstic expectations from ourselves. 
    There are many studies that show (and I have seen it more than once in my own clinic) that when we honestly tell our patients that we are having a bad day (for what ever reason) they will me more than understanding; when we share with them our own frustration with our limitations and the limitations of medicine  they will be much less demanding; when we acknowledge their fears and concerns and try to help them find the best way to realistically live with their illness they will be much less dependent and clinging. 

    But, in order to do that we have to be able to acknowledge our own emotions, admit our own limitations, truly get to know our patients and their support systems, and during our training we are taught and expected to do the exact opposite. 

    • Anonymous

      How anyone can read Dr. Groves’s paper and come up with your interpretation of what he says is beyond me. First, these are not his patients that he is describing. Second, his conclusion is the same as yours: that docs should, when dealing with a patient that they label as “hateful,” use that unpleasant feeling as a cue to do some serious self-examination. Give the good doc a break. 

      • Michal Haran

        I may (or may not) have been wrong in his incentive to address this issue.  But, the end result was that intentionally or non-intentionally he created 2-D patient types/labels that when used incorrectly can cause much more harm than good. 

        He gave physicians the legitimacy to blame the patient’s personality for their frustration. It is not you (the physician), it is not the patient’s disease, it is the person (who is your patient) that is making you (and anyone else who will encounter him) feel that way.

        more times than not, our reaction is not toward the patient, but toward his/her disease and the way it responds (or doesn’t respond) to our well-intentioned interventions. 
        The same applies, in my opinion to the response of our patients to us. Their anger and frustration is because they have an illness we are unable to cure, or has relapsed, not because we didn’t do our best, but because this is the way their illness is. 

        Hippocrates, very wisely said that the art of healing has three components-the physician, the patient and the disease. 
        Many times in modern medicine, physicians and patients forget that third component. 

        We know, but forget that diseases are not caused by physician nor by patients. They are accidents of life. We fortunately have ways to treat and control many of them but unfortunately, with all the advances since the time of Hippocrates not all. 

        Given the choice, I believe physicians would choose to treat only diseases that require some thought process to diagnose (but are not too intriguing involving a long and frustrating diagnostic process), and respond very well to their brilliantly chosen management approach. The patient personality under those circumstances would be of much less importance. 
        I believe that most patient would be very glad to have such easy to diagnose and manage diseases as well.  

        Unfortunately, physicians and patients are not given this choice, and that is how we end up having “hateful patients” and “incompetent and uncaring physicians” much more than their true numbers in the population. 

  • http://pulse.yahoo.com/_UDJTUH45CFUC6LKCBLB6FGRDKU Diane

    You know, for the past 18+ months, I’ve had the misfortune to suffer some very real and serious medical problems after living a decently healthy lifestyle by all standards. We are still trying to get to the bottom of what is going on. I have been very fortunate to not miss any work days, though I have dragged into work like a beat dog on so many occasions it’s ridiculous. Since I work PT, I make my endless medical appts on my days off but had to schedule an upcoming test on a work day and therefore had to tell my boss about one of my problems. Boss is actually aware of some of the most serious of problems and has shown great concern, but on this particular day, boss threw up those hands in exacerbation and asked, “What’s next, restless legs syndrome?” 

    Uh, little does boss know about that other problem I have to discuss with my PCP this week. Not RL per se, but along those lines that keeps me up many a night and drives me insane. Don’t know what it is so can’t tell you if it’s badly named or not! But I sympathize COMPLETELY!!  I did have a friend years ago who had RLS and all he could take at the time was clonazepam so I guess treatment has evolved now. I sympathized with him then b/c I got the same creepy crawly feeling while studying late at night in college and I was awake. I’d pace the library (ironically at the med school since it was open late though I was in undergrad). Not even a caffeine problem in those days! Somehow running seemed to solve that problem for about 15 years though I quit that when I had kids a while back.

    But, despite boss’s annoyance at my need for an afternoon off (and another employee’s sudden, unexpected hospitalization) or more so, as my husband said when he came on a recent desperate visit to the PCP concerning extreme nausea and weight loss that I’m “obsessed with figuring out what’s wrong” – uh, who wouldn’t be? Needless to say, the PCP took my side, did not send me to a psychiatrist but rather to 2 specialists b/c of said problem and bad labs. I feel blessed to have such caring people in my life and I’m a glass half full person these days. I didn’t ask to be dealt this hand of cards, but in the past month, I’ve decided to take better charge of my life and if it can’t be my innards, gratitude has got to be one of them.

  • Mary Schweitzer

    Thank you for an excellent article.  Leonard Jason of DePaul University once sent graduate students to various emergency rooms in the Chicago area with one of three diagnoses (and identical symptoms) – chronic fatigue syndrome, myalgic encephalomyelitis, and Nightingale Disease (for Florence Nightingale).  The only ones who were taken seriously were the ones who said they had M.E., and they were taken VERY seriously.

    The focus on “fatigue” was not a scientific choice.  The decision was made by CDC, when two demographer were sent to look at the cluster outbreak of a “mysterious” disease at north Lake Tahoe.  They were told to just focus on fatigue, and by doing so, they were able to reduce an outbreak of over 140 patients to just 7.  Voila!  No cluster outbreak!  (then they went skiing, or so the story goes)  [thanks to Hillary Johnson and “Osler’s Web,” and personal stories from those who were there.

    This disease HAD a name, myalgic encephalomyelitis.  It was called epidemic neuromyesthenia in the U.S. until 1970, then that diagnosis was dropped.  At a meeting in 1988 to name the disease, at least 3 of 18 in attendance knew what M.E. was and said that’s what these patients had.  That information never even made it to a footnote.

    After it was clear that the cluster outbreaks were not Chronic Epstein-Barr, the late NIH researcher Stephen Straus, who had embarrassed himself by saying so publicly, decided it was psychogenic.  Straus was in NIAID (National Institute of Allergies and Infectious Disease) at NIH – if the disease was psychogenic, shouldn’t it have gone over to NIMH?  But he kept it at NIAID, and had a veto on every request for funding that would have disproved his theories.  He also would go over to England on a regular basis and stand up with the psychiatrists who had created the Oxford definition – six months of chronic fatigue and no physical symptoms, and anybody with a psychiatric diagnosis could be included.  (very different from the CDC definitions for which psychiatric diagnoses were exclusionary, and four of 8 physical symptoms were required).  Straus should have been supporting CDC – but instead he was in England, supporting the psychiatrists.  To make this more interesting, the psychiatrists were also working for major insurance companies.  One remains chief medical officer of a multinational re-insurance company to this day.  

    SO – you asked WHO creates these names?  See who created CFS?  See who liked it?  and … hmmm … who saves money by a disease name that implies there isn’t anything really serious there?

    CFS was such an obvious wrong turn – why not go back to M.E.?  because, they said, there was no evidence of “itis” – no evidence of inflammation of the brain.  Inflammtion is a proxy for infection, and there was indeed evidence of infection in the brain, brain stem, and central nervous system.  In the years since, many patients have been found to have active cases of diseases known to have negative effects on the CNS – EBV HHV-6A, CMV – but the CDC refuses to even consider it.  They stick to chronic fatigue syndrome and to theories about too much childhood “stress” leading to an inability to “handle stress” in the future.  Look at their website on CFS – http://www.cdc.gpv/cfs/     – The thing is ridiculous.

    In the U.S. alone, one million adults and perhaps 150,000 school-aged kids have this disease.  Many will have it their entire lives.  Of those who currently have it, half cannot work AT ALL.  We don’t really know how many are completely bedridden except many of us know some who are.  

    Hasn’t that name done exactly what it was supposed to?  Nobody knows about all these sick people.  Even CDC admits that 850,000 HAVE NO DIAGNOSIS.  

    BTW, try “nocturnal myoclonus” instead of “restless leg syndrome,” and I have been helped with small doses of clonazapam.  (I take it when in a confined space like an MRI, too – not a good place to get an attack!)

  • Anonymous

     In my experience, truth about a medical condition does not serve labeling.  Labeling serves a human need that resonates with a denial of knowing and asking questions.  In other words, the conscious choice of being conveniently ignorant dominates, since there are no penalties and no law has been violated.  Therefore, I am asking you why humans label?  Do we fulfill a need to justify the discrimination, or the exclusion of the label?  Does labeling reflect the abstract society we live in?  Does labeling serve the ones with no medical condition?  To return the favor, I can share with you my most recent label that I received as a whisper behind my back.  I was labeled an alcoholic because of my visible wide gate walking.  My wide gate walking is the result of my multiple sclerosis.  Needless to say, I did not turn to to inform the the ignorant labelers about my medical condition.  I laughed loudly, knowing that I might have another label on my back:  she’s just crazy.

  • peter pope

     all to often the standard of care treatments are not made well.ignorance of best practice and keeping up to date, which so often isn’t that hard to do, particularly with the more common conditions that medical asisstance is sort for .
    The sense in seeking a Physician is someone to work with and thru medical issues,it seems to me sound and sensible .To not to be able to discuss well with a practitioner is ludicrous.
    Yr remarks re patients enjoying conflict  etc is quite valid but is only one side of the coin.consumer rights are often submerged etc to the often more powerful position of the Practitioner.
    people are not always able to articulte well ,this is true of both sides of the coin.with a patient if they cant advocate well for themselves it is very easy to be sidelined at best and ill treated at worst,with significant conseqences
    obviously there is much more to the topic.