Recently Glenn Beck has revealed that he has been struggling with medical issues for the last five years or so. On his show he states:

“Tonight’s show is not for the casual fan or, really, anyone in the press,” Beck said. “This is a one-on-one between friends. No one in the media ever does a show like this, because it is crazy. … But I believe that by not talking with you openly, it destroys everything of real meaning and value — namely, our trust.”

What follows is a common narrative we have heard before. Beck was very sick with a mysterious illness. His symptoms were mainly pain and numbness in the hands and feet, lack of sleep, mental fog, muscle problems, and vocal cord paralysis. He saw many doctors, who were unable to make a definitive diagnosis, while he slowly deteriorated.

Finally he saw a maverick doctor with unconventional treatments. He was able to explain all of Beck’s symptoms, and gave him a comprehensive treatment program which has reversed Beck’s illness. Now Beck is back with a “clean bill of health.”

Even though I am a neurologist and I have my suspicions about what was really going on, I am not going to attempt to diagnose Beck from afar. What I want to discuss is the issue of public figures using their own health to tell a moral narrative. It’s very problematic for several reasons.

The first is that medical stories, especially those involving a complex or difficult-to-diagnose condition, are, well, complex. There are often many nuances to such stories and they are not easily captured with simplistic narratives. For example, it is very difficult to know what Beck’s various physicians were thinking without either talking to them directly or having access to his medical record. Second-hand reports of the what other doctors are thinking are never, in my experience, accurate.

Further – a diagnosis is not an all-or-nothing phenomenon. However, the common misperception is that it is, that doctors either have a very specific and comprehensive diagnosis to explain what is going on, or they have no idea. I reality we often live in the vast gray area between these two extremes. It is often possible to know what kind of a process is going on, or what category of disease is present, even though the specific diagnosis is not known. Specific diseases can also at times be confidently ruled out, narrowing the list of possible diseases that remain.

At the end of a comprehensive evaluation and diagnostic workup, it is possible that doctors will have lots of information about what is and is not going on with a patient, and perhaps they may have a short list of the most likely possibilities (called a differential diagnosis), even though there is no smoking-gun evidence for a single diagnosis. There are also often diagnoses that can’t be ruled out by any test, and so they remain on the list. At this point doctors may know enough to recommend treatments that are likely to be helpful. Following the course of the disease, and response to treatments, also provides further diagnostic information. Sometimes it just takes time for a disease to fully declare itself.

It is difficult to convey all of this to a patient. Sometimes, even after and extensive conversation trying to carefully lay out the situation, patients walk away hearing, “they don’t know what’s wrong with me.” That is understandable – to be clear, I am not blaming patients, nor the doctors. It’s just a difficult situation, often laced with emotions, making it very challenging to convey highly technical and nuanced information.

In any case, patients walk away with their own narrative of their medical history. Memory then takes its toll, as the narrative is continuously reconstructed. Almost on a daily basis I have the experience of soliciting a history from a patient, and also having the opportunity to compare that history with the recorded medical record. It is interesting how divergent the two can be.

Therefore, when a medical narrative becomes part of the public conversation, it is highly problematic because the public is being fed one person’s narrative, and the doctors (bound by confidentiality) are not able to tell their side, nor is the accuracy of the story compared to the medical record. We don’t, therefore, really have accurate information about Jenny McCarthy’s son’s autism diagnosis. We don’t know what Justina Pelletier’s doctors really think is going on. And we have no idea what the differential diagnosis was for Beck, what diagnostic information was available, or any other details that would help put his story into context.

This is concerning when the narrative that the public figure chooses to make public is serving an ideological purpose or is being used to promote quackery. McCarthy’s narrative regarding her son was used to promote her anti-vaccine agenda, for example.

In Beck’s case his narrative is promoting someone who, in my opinion, is a dangerous crank. Carrick calls himself a “chiropractic neurologist,” which is not a legitimate specialty, in my opinion. Ted Carrick himself and promoted extremely dubious ideas that do not hold up to  scrutiny. His gyrostim treatment appears to be nothing but quackery. Beck’s story also has many red flags of dubious treatment. For example, the diagnosis of “adrenal fatigue” is essentially a fake diagnosis.

Conclusion

In my opinion, celebrities and other public figures who disclose their medical information have a certain responsibility. It’s one thing if they are simply disclosing that they have a medical condition, and choose to give out certain details about their condition as they see fit. I have no issue with that.

However, if they use the story of their medical condition (or that of a loved-one) in order to promote a specific narrative or ideology, in order to advocate for a position, or to promote a specific practitioner or treatment, then they should also (in the name of public discourse) release their medical records and/or give their physicians permission to speak publicly and openly about their case.

Otherwise they can tell whatever fiction they choose knowing that the objective record of their medical history is sealed, and their doctors are gagged from ever setting the record straight. What Beck has done is, in my opinion, irresponsible.

I suspect that he believes the narrative he is telling, and I don’t really blame him. No matter how you interpret the story, it seems like he was suffering from a serious condition that was confusing to his doctors, and now he has fallen prey to a dubious practitioner who exploits celebrities for self-promotion. He has likely also just not thought through the implications of telling his version of events while being protected through confidentiality from ever being corrected. He likely does not realize that his narrative is anything other than the objective truth. (At least I am willing to give him the benefit of the doubt.)

However – now that his story is out he is sure to learn that Carrick is a controversial figure and his treatments are considered dubious by the scientific community. If Beck cares about the truth, about being responsible, then he will make his medical records public, or at least let his doctors explain what was really going on. Consider this a public request.