Why #PatientsAreNotFaking Began And What It Says About Health Care

Over the past couple days the hashtag #PatientsAreNotFaking has been trending on Twitter. What exactly are patients “not faking”? “Not faking” belief that our current healthcare system is somehow working well? Nah, no one should really believe that.

No, instead, the hashtag is actually the start of a sentence that was meant to conclude with, “their symptoms and medical problems,” or something similar to this phrase. Yes, many patients around the country have encountered doctors and other healthcare professionals who have either ignored or discounted their symptoms that in many cases turned out to be signs of serious underlying medical conditions.

If you are wondering how common and big a problem this may be, just look at what happened after the following video was posted on social media:

As Yoda might say, open floodgates this video did. First off was this response from @Imani_Barbarin who included the #PatientsAreNotFaking hashtag:

And thus the new hashtag was born, which then quickly accumulated lots and lots of short stories of medical diagnoses being delayed because patients were not taken seriously enough. For example, here is what @Ashtronova was apparently told by a doctor:

Huh? Standard medical advice should not be “try to sleep over half the day away.” In fact, there is no activity that you should be doing for more than half a day each day. Having to sleep for 14 hours a day should have suggested that something was seriously amiss. At the very least, there should have been some type of sleep work-up as soon as possible.

Then, there was @tori_saylo’ s story of being told to “calm down”:

Even if someone were having a panic attack, just telling that person to “relax” or “calm down” is probably not the best course of action. It can be a bit like telling the captain of the Titanic to “just avoid the iceberg.”

Unfortunately, the tweet above is not an uncommon story for conditions like multiple sclerosis (MS). As I wrote previously for Forbes, movie and television star Selma Blair suffered “not being taken seriously by doctors” for years before finally being diagnosed with MS. And Blair is a well-known celebrity. Imagine what those who feel ignored in general and don’t have resources have to suffer.

Such delays in diagnosis can not only prolong suffering and confusion but also put patients at serious risk for missing treatment opportunities. It wasn’t clear from @TVWatchtower’s tweet what delays in her diagnoses may have cost her:

But @hattiegladwell was more explicit about what ended up happening to her:

Yeah, just being told to eat bananas may be helpful if you are asking for something to accompany your ice cream. But for bleeding, severe weight loss, and chronic constipation? A bowel perforation is a major, major life-threatening medical emergency. Having your large intestine removed and a stoma placed are life-altering events. So the question is could all of this have been averted had doctors taken a closer look at her condition in the first place?

These were just some of the heart-wrenching stories that emerged from the hashtag. If you were surprised by these stories, then you haven’t spent much time with our healthcare system. Sure, walking into the emergency room with your arm falling off may typically get attention. But studies have shown that many doctors and other healthcare professionals aren’t doing great jobs at listening to people. For example, a study that I covered before for Forbes showed how doctors on average interrupt patients after only 11 seconds. That’s barely enough time to release and recover from an extended fart let alone listen to a patient’s complaints thoughtfully.

Certainly, some doctors and health professionals are naturally too quick to judge patients, relying on stereotypes and pre-conceived notions. I have seen this numerous times throughout my medical career. For example, I once heard a doctor claim that a young Asian American patient was probably tired because he was studying too much, without knowing much about the patient. The doctor was not Asian American and to my knowledge still isn’t. It turned out that the patient had a thyroid condition and really didn’t study very much. Stereotypes, sexism, racism, ageism, body type-ism, and other -isms can prevent people especially women, racial and ethnic minorities, those of various sexual orientations, and those of certain body types (e.g., those with obesity) from having their concerns being taken seriously.

Here are just some examples of the many, many #PatientsAreNotFaking tweets indicating these issues:

Indeed, it is telling that the majority of the #PatientsAreNotfaking twitter posts seem to have been from women.

Moreover, many health professionals may be ill-informed about and thus overlook medical conditions that have more subtle symptoms such as Lyme Disease or fibromyalgia or are rare such as Ehlers Danlos Syndrome. For example:

Some health professionals may not even consider conditions outside the realm of what they are used to seeing. The following tweets echoed this sentiment:

However, the larger problem may not be individual doctors and other health professionals but rather the healthcare systems around them. Many clinics and hospitals put doctors and patients on what essentially are assembly lines that allow only 15 minutes for them to see each other, as I have also covered for Forbes. This just isn’t enough time for a doctor to really get to know you or your situation. Plus, insurance companies, hospitals, and other healthcare organizations can keep doctors distracted from actual patient care with things such as mounds and mounds of paperwork.

Additionally, how much emphasis and incentive do healthcare organizations provide doctors and other healthcare professionals to really listen to patients and recognize and avoid biases and snap judgments? How much diversity is there in leadership of healthcare organizations and medicine so that the overriding culture is to be sensitive to and understand all kinds of people, including those who are from potentially overlooked demographic groups such as women and minorities? A tweet by @colleenmfarrell suggested that the opposite is often the overriding culture:

Finally, many doctors and healthcare professionals may feel burnt out and under too much pressure. As I have written for Forbes previously, this then can get passed along to patients as doctors may not have the time and energy to listen carefully to patients. The following tweet alluded to this problem:

The “D Rose” video and subsequent hashtag shed more light on what is a major problem with our healthcare system. To be fair, “D Rose” did not seem to ever suggest that all or even the majority of patients are “faking” problems and did follow up with the following tweets:

Certainly, some patients may be exaggerating symptoms or even faking them. Indeed, there are reasons why certain patients may do this such as to get attention or to get healthcare professionals to do something. If you have worked in healthcare long enough, you will encounter such patients. So perhaps “D Rose” was referring to these specific situations.

Nonetheless, as the response to the #PatientsAreNotFaking demonstrated, the video did touch a major nerve or rather many major nerves, not surprisingly. Just because you may have seen one or a small proportion of patients faking an issue, doesn’t mean that this should apply in general. There are many, many, many, many more patients who do not fake or exaggerate their symptoms but rightfully feel ignored. In fact, you’d expect the vast, vast majority of patients to not be faking or exaggerating anything. After all, why would they take time out of their busy schedules to see a doctor in a clinic, a hospital, or an emergency room, places that are neither “fun” nor free places to be?

In fact, many patients may not be telling doctors enough about their symptoms. It can be very difficult for patients to reveal what may be perceived as embarrassing issues or things that take time to explain. Or they may not even recall some problems that they have been having. Heck, try telling your whole story when you are sitting in a cold and uncomfortable examination room, wearing one of those gowns that exposes your backside, all within a few minutes or even 11 seconds.

The last thing that a healthcare professional should do is discount any symptoms that a patient may be having. In fact, the opposite should happen. Patients need an atmosphere where they feel comfortable and safe and are encouraged to discuss everything that may be bothering them. The relationship between a doctor and a patient should be one with mutual trust where they communicate with and truly understand one another. Many healthcare professionals may want such a situation but may not necessarily be in a system where this is easy to do.

Therefore, healthcare systems need to change to allow and encourage such doctors and other healthcare professionals to hear patients out, to really get to know patients’ situations, to not make snap judgments, and to work with patients more closely to problem-solve together. If this isn’t the case, then what’s really faking things is the healthcare system.