Coping, Society

Blaming the Patient

Commenting on Food Triggers & Unrealistic Expectations, Kate responded to a part of Heal Your Headache that I skipped over. A part that makes my blood boil and fills me with shame for having put the book in my recommended list.

“Diets aside, I have a HUGE problem with Buchholz’s book. It’s Chapter Nine: ‘When Treatment Fails.’ In this chapter he speaks of ‘hidden agendas’ for treatment failure, such as ‘…when we reap the rewards from being in the sick role. When we’re sick, others give us their attention, concern, affection, sympathy, help, forgiveness, and permission to be excused from work and other responsibilities. As a neurologist friend of mine has noted, we all like having our pillows fluffed.’

“He states that ‘we all struggle with our identities,’ and suggests that the title of ‘headache patient’ gives us at least ‘SOME identity’ and ‘distinguishes’ us. Can you even imagine this??

“He goes on to put forth reasons that headaches are ‘hard to let go of,’ producing patients who ‘don’t try hard enough.’

“This is an outrage. And he is being touted as a ‘headache expert,’ was given an hour on Larry King Live, and patients everywhere are being given his book to read. And I wonder how many DOCTORS without enough headache training are using his book as a guide??

“Even worse, in the same chapter is a section entitled ‘The Trap of Disability Status.’ He states that no doctor should support long-term disability claims based on headache complaints. ‘The patient who walks out of a doctor’s office with a signed disability form is grateful and content, in contrast to the one who departs angrily with an unsigned form.’

“He states that he understands that we are suffering, but that we are suffering because we have never had PROPER treatment, such as his ‘1-2-3 Plan’ (which I can’t say has much in it that I haven’t heard before). He writes: ‘Disability is a trap: it guarantees that you’ll be complaining of headache until you choose to set yourself free.’ SET MYSELF FREE???

“Kerrie, is anyone else insulted by this?? When I walked out of my doctor’s office knowing I had to apply for disability, I was crying, not ‘content’ by any stretch. Having to stop working was horrifying, and produced NO rewards and certainly no improvement in my ‘sense of identity.’ Oh — and how about the big windfall of cash-flow that we pillow-fluffers on disability get to live on?? My-oh-my, sometimes I just don’t know what to do with ALL OF THIS MONEY!!! Guess I’ll just have to go out and buy some more fluffy pillows and bon-bons.

“Sounds like blaming the patient to ME, which is precisely what he chastised the medical establishment for doing at the opening of his book.

“I just don’t get why this book is getting so much acclaim. I don’t care HOW fabulous his dietary and rebound ideas are for some people; this is profoundly insulting, degrading, pompous, disrespectful, and bizarrely ignorant. I fear most for new patients who may read his book and, once again, look poorly on THEMSELVES when the Great Doctor’s big Plan doesn’t cure them.”

6 thoughts on “Blaming the Patient”

  1. I wrote to your blog (great job by the way!) a few (many) months ago in response to the topic of secondary gain and headache patients. Then I got very busy and did not return to your site until a few days ago. Upon reading my post and your response, I realized how negative and disparaging I appeared and I wanted take the opportunity to explain my perspective. In your response you correctly pointed out that headache specialists, like most physicians, are variable in practice style and personal attributes. In fact, I have met some truly wonderful headache specialists and I feel badly for disparaging the entire crowd.

    My concerns relate far more to the process of selecting treatment recommendations and developing guidelines than to physicians and specific treatment recommendation. I recognize that current treatment recommendations help many headache sufferers. However, unfortunately, they also fail to help many others. People, including headache specialists, often respond to my concerns by defending the legitimacy or effectiveness of chronic headache treatment recommendations. Whether intentional or not, such a focus evades and confuses the issues.

    Much is lost along the way to defining final treatment protocols. Treatment options that help too few individuals or are deemed inappropriate for unknown or unclear reasons are omitted. Physicians are often unwilling to consider omitted treatments no matter how compelling the argument. Treatment protocols take on a life of their own and practicing physicians take significant risks when deviating from them no matter how little they actually help.

    There are some very compassionate headache specialists who are willing to adapt treatment plans to meet individual preferences and needs. I regret the cynicism and negativity of my prior communication especially because I did not acknowledge these physicians. I used the term “headache specialist” in the context of members of professional organizations that develop treatment guidelines and promote certain recommendations. Over time I have become increasingly dismayed by how rigidly many headache specialists adhere to treatment they know is flawed and ineffective and by how stubbornly they refuse to consider alternate perspectives.

    In fact, physicians can become almost cult like in their tendency to repeat mantras (eg. Opioids cause rebound) and ability to shut out even the most convincing arguments. In the past I have been tempted to assign motive for these behaviors;. for example, the need to remain loyal to colleagues and animosity or distrust of patients. Recently, I realized that not only is motive irrelevant but I cannot possibly identify what actually drives individual choices and behavior. Besides doing so only allows the opportunity to divert the focus from the original issues.

    What is relevant for example is that opioids are very effective at helping some chronic headache sufferers regardless of the risks. Furthermore, since individual headache sufferers are the ones actually assuming the risks, or at least most of the risks identified by headache specialists, their opinion matters and ought to be an important consideration in the final treatment plan.. Frequently, the lack of serious consideration regarding opioids for chronic headaches is masked by the seemingly magnanimous way in which headache specialists address patient concerns and questions. Actually, I’ve noticed that headache specialists usually talk at rather than to patients and abruptly end conversations or outreach before relevant issues are even raised.

    For all the talk of allegiance for patient preferences and participation, headache treatment remains largely paternalistic I don’t object to authoritative or paternalistic medical practice as long as physicians base treatment upon the most scientific and objective information and guard against too much imposition of personal values and biases (at least conscious). Headache specialists, however, are often capricious in the way they decide treatment and interact with patients. Furthermore, I have seen very little in the way of personal reflection regarding the approach they take. They are of course very willing to second guess the headache sufferer who presents treatment challenges, but apparently unwilling to reveal personal doubts regarding the treatment and advice they provide.

    Headache sufferers know often sort of intuitively how little is actually certain regarding management of their symptoms. They become accustomed to the unpredictability regarding life with chronic headaches. Therefore I believe many of them recognize that overly confident assurances regarding treatment or attempts to bluster are suspect. I find honest admissions regarding just how limited chronic headache treatment really is far more tolerable than disingenuous pretenses of new and effective treatment approaches or compassionate, “we feel your pain” platitudes..

    I did not start my search for headache information with this much criticism or condemnation. In fact, through medical school, residency, and well into practice, I had the highest regard for neurologists and headache specialists. I also see that as a profession they have wonderful attributes like enthusiasm and overwhelming dedication, There is no doubt that many headache sufferers are better off for the efforts of headache specialists. All these realizations, however, only make my disappointment that much more acute. Imagine the potential help they could offer if only they could reconsider and reorient the approach to chronic headaches just a little.

    Carol Kennon, MD

  2. Hi Kerrie –
    I just want to thank you for posting my thoughts on this book. It’s really validating for me to read the comments of others. Thanks, -Kate

    You’re welcome! It was such a great comment that couldn’t let it just get buried.


  3. I am a doctor (peds) and a CH sufferer. I had to quit practicing medicine 6 yrs ago because of CH. Since then I have been reading info on CH treatment and getting more and more dismayed by most headache specialists. CH therapy is mostly predicated upon unfair and largely unfounded assumptions about CH pts (eg. have psych problems, manipulative, cause our own HAs by taking too much medicine, not sleeping enough, too much sleep, what we eat (or don’t), our expectations, poor compliance…and on and on.

    I love your website. Thank you for doing such a nice job. I think you are just a little too nice to doctors but I am very cynical at this point.

    Keep up the good work

    Thanks for the kind words.

    There are definitely a lot of bad headache docs out there, but I know there are some good ones too. It is hard for anyone with headache to find good care, but I think it’s even harder when someone has chronic headache — searching for a good doc often takes more energy that you have.

    I’ve often wondered if people think I’m too nice to doctors or patients or drug companies or whatever. I know everyone has a good side, so I’m always hopeful it’s just hidden. But even I think that I’m too nice at times!

    Take care of yourself.


  4. Like any other book on Migraine some parts of “Heal Your Headache” are smart and some are off-base and should be ignored. Overall I think the book does a great job presenting a model of headaches that is understandable by someone with a non-scientific background. It is very cocky at points (especially in the introduction and the last chapters of the book) but the way the model itself is described is excellent.

    Other aspects of the book that pissed me off:

    (1) his anti-diary stance, how can you detect seasonal patterns in your headaches without a headache diary?

    (2) his position that his method can not be proven and it should be taken on faith

    (3) the attitude that you can realistically stop eating *all* of the foods in the trigger food lists. go try to get a meal at a restauraunt without any of those foods in it. good luck.

    I agree with you about the book having some good information and appreciate your comments on what you don’t like it. Your second point is one of the big things that bothers me about the book.


  5. I totally agree with this comment on the Buchholz book. While there are some excellent sections in it, I found some sections to be unrealistic and some that defy large bodies of both scientific and anecdotal evidence. Buchholz also says that acetaminophen doesn’t cause rebound and to limit triptan use to two days a MONTH. I consider this a “buffet” book — take what’s reasonable and helpful and leave the rest.

    Great point, Teri!


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