Getting a diagnosis for a rare disease is hard. Not many people are familiar with the many obscure symptoms and manifestations of these diseases. Because of this, patients with rare diseases often suffer because they are not believed or understood. Patients may be told its all in their head, that they are an addict looking for pills, it’s due to mental health issues, or that they are overreacting. So to see the validity of this experience mocked? This is the kind of mentality that gets patients ignored and puts lives in danger.
One patient tweeted, “this is what gets people killed.”
A TikTok video went viral last week that featured a health-care worker mockingly dancing as she fakes a cough, imitating patients with the caption “We know when y’all are faking.” This was not taken well. Patients are sick, and they are sick of not being taken seriously. They are coming to doctors for help, not to be ridiculed for asking for it. Being accused of lying only adds insult to injury.
So began the hashtag PatientsAreNotFaking that became one of the top hashtags of the week, as people added their own story of not being believed by healthcare professionals. There were many stories of people coming to medical professionals with symptoms and turned away only for the disease to progress into some sort of medical crisis. @SimonoffBob tweeted “wife went to the ER. Bad headache for days. Nausea. Tinnitus. They did blood tests and imaging. The doctor said, “we can’t find anything,” Then to me, “are you paying her enough attention?”. She stood, collapsed. Later dxed with intracranial hypertension #PatientsAreNotFaking
.” These are crises that could have been avoided had staff been attentive to what the patient had said.
Others describe coming with symptoms and receiving diagnoses of anxiety or depression or some other psychological disorder and then having their underlying disease dismissed as in their own head. @ActuallyRoo wrote, “Suddenly wasn’t able to walk at 22. Multiple Doctors told me I was making it up for attention. Turns out my spine dislocates in multiple places, my brain is falling out of my skull, I’ve had multiple mini strokes and need life saving surgery. #PatientsAreNotFaking.”
Patients discuss the careful balance of seeming legitimate; how they must censor themselves to be heard. @Bennessb tweeted, “A really f****d up thing about how credibility works is that when we feel like people don’t believe us we start to get desperate, but when we sound desperate people are even less likely to believe us. #PatientsAreNotFaking
Others are sharing methods they’ve learned to employ to get through to doctors that they are serious. @Aurashakes tweeted a list of tips
including using third party confirmation, omitting any history of mental health issues, mentioning family members with similar symptoms, and many more.
Race, Gender Identity, and Health Care
Often people with less privileged identities such as those who are black, indigenous, trans, or queer have more obstacles when dealing with the healthcare system. The black and gay communities have not forgotten when the AIDS epidemic which largely affected their communities went unaddressed and hundreds of thousands of people lost their lives. People with privilege also get the benefit of credibility. Women post their symptoms being attributed to menstruation or hysteria, and how having a man to confirm their symptoms helps them. Patients of color contribute how much it helps to have doctors of color too. @Olas_truth added, “#PatientsAreNotFaking
is why I get excited when I have a black doctor in the hospital. I know they’ll actually believe me when I say I’m in pain and take my symptoms seriously.” I know they care when they say they do.” Others add that even if there are addicts wanting painkillers, they deserve compassion too.
There is debate on the feed, with some doctors tweeting ‘not all doctors,’ and some patients just asking them to listen and not argue. Of course there are many healthcare professionals who are attentive to patient concerns and are joining in with their own. Dr. Eugene Gu added to the conversation, posting, “Doctors are human beings who make mistakes and can dismiss the concerns of patients out of ego or pride because we think we know better than you do for your own bodies. It’s wrong.”