There is opportunity for learning here. Are we using it?

A recent video on Twitter, originating from TikTok user damndrosetiktok, started to circulate. It stirred anger from healthcare workers and patients alike.

It was meant to be funny. It shows a woman with a stethoscope across her shoulders beatboxing and dancing to the sound of a woman dressed in hospital gown hyperventilating. It’s captioned, “we know when y’all are faking,” implying the hyperventilation was being faked, and that people in healthcare are actively judging patients as faking on a regular basis. At the moment, the video has over 21.3 million views on Twitter. Check it out:

Before I dig in much further, and so we are perfectly clear, my feeling on this is that it is very much not funny, and here’s one big reason why:

There is a severe issue in this country where patients are feeling ignored when they come to us. In fact, this has been researched because it is so prevalently reported. There appears to be a gender disparity here, too. While women report more symptoms than men do, their reported concerns are more frequently blown off. They may even receive different plans of care than men entirely. Ethnic minorities also face these disparities, which becomes a “double whammy” for women of color.

For those with a not-yet-diagnosed chronic illness (or illness with their legitimacy questioned, such a fibromyalgia), the assumption starts to be made that the patients are faking their symptoms. Studies like this one demonstrate that fact when results reveal that healthcare workers start to question whether the patient really is sick.

Women have more symptoms, but don’t worry: they’re all in the women’s heads.

It is within that context that many are viewing the above video. The hashtag #PatientsAreNotFaking started, and the stories on there are disheartening, some tragic, some downright alarming.

Look, we’re not perfect, and yes, quite unfortunately, things will be missed sometimes. That said, it is not okay to ignore a patient. It’s especially not okay to do this:

Now, you’re probably wondering, why have I brought this up?

This next tweet caught my eye:

When you’ve been ignored so many times in the past, what do you do?

Patients, especially those with chronic illnesses, resort to extreme methods of trying to get us to hear them when they reach this point of desperation. There are multiple tweets just like that one, people indicating how they change their behaviors to achieve a result. While on one hand, this ironically is actually faking, on the other, we’ve broken this relationship where trust should be.

Have you ever experienced being ignored by a nurse or a doctor? I have my own experience with this. In 2013, I had taken a seizure-threshold lowering medication. I’d been on it for awhile, but a dosage increase was too much for my body to handle. I am now diagnosed with epilepsy but at that time, I had no idea what was happening. My seizures are located in my left temporal lobe. I don’t have convulsions, but instead, have really weird effects that are unseen to others. I lose nouns, and hallucinate smells. On this particular occasion, and the reason it got me diagnosed, however, is I had gone into status epilepticus.

For days, I was having cyclical losses of memory, 1-2 times per 1-2 minutes. It was non-stop and terrifying. I was told by 3 separate people that I was just anxious and I needed to calm down. Finally, I went to the ED out of desperation. The ED doctor contacted one of the people who had blown me off, and when he came back to tell me he’d talked to him, I lost my temper. I told him quite clearly in a raised voice that I was there for his opinion, not the other guy’s. Thank goodness that worked because we ended up being given a place to start: stop the medication, this might be seizures.

I saw my GP, who was also one of the ones who had blown me off, two days later and she disagreed with the ED doctor completely. I could just feel in my bones that he had been right. She refused a referral to a neurologist. I felt like I was losing my mind. The seizures had actually been slowing down since beginning a quick wean off the medication. I knew that doctor was right. I didn’t argue with her refusal, but after getting back home and feeling the seizures subside completely over the next week, I called and demanded the referral. I got it, and months after that nightmare, an EEG confirmed that I do have epilepsy.

I always like to say I’m lucky because I have the easiest epilepsy there is. I am very, very grateful for that, but where that experience left me psychologically is not a good place. I felt traumatized by the experience. Even today, I’m afraid of what happens if I lose my ability to clearly describe what is wrong with me when seeking medical attention. Experiencing this level of vulnerability while feeling fear simultaneously takes me out of my rational mind and into “trauma brain”: that place where I just can’t advocate for myself well and I know that could potentially hurt me. I’m terrified of this happening again.

That is how I feel as a nurse. Now imagine that feeling as a patient without prior healthcare experience or knowledge.

Let’s say you’re a patient or a visitor. You are powerless to make the people around you understand what is happening. They seem to be ignoring you. You know that what they’re saying and treating is wrong. You protest, but the doctors and nurses become even more adamant that they are right. You don’t understand medical jargon, and you understand physiology even less. The more you talk, the less they listen. You become angry because you just need someone to hear you, to take you seriously.

What do you do?

Disclaimer: what’s being said next is not, nor will anything I ever say, be meant to justify violence. These next sentences are intended to build empathy for the prevention-minded.

While violence is obviously never an answer, imagine being in the place of a patient or family member afraid of a wrong decision being lethal. These are the emotions that lead to some of the assaults we encounter. A person may be so afraid that in their powerlessness, they lash out. As tweeter @Imani_Barbarin illustrated: people will engage in exaggerated or threatening behaviors in order to be heard.

What we need to do is listen. Deescalation skills are the top priority in this situation, not just for your safety, but for the patient’s accurate diagnosis and treatment as well. If the escalating conversation begins with you actively listening, they are given the opportunity to be heard, but it can’t stop with just that.

After listening, repeat back what they are saying in your words to ensure you understand fully. If you get it wrong and this frustrates them, apologize, and ensure they know you want to understand and you want to help. Validate them, and make sure they know they are validated. When you both know that you understand, then you can assess what they’d like to happen next. If you can present them options at this point, then do so. If you cannot, then let them know that you need to find out what options there are. Unfortunately, there will be times when the options you are able to present will not make them happy. It’s up to us to make sure they understand why their options are limited, and what benefits or risks exist to each.

All of this, of course, needs to be done with you in your calm, rational brain. If you walk in angry, they will know, and this will just make the conversation go downhill quickly. Take a minute to chill. It’s okay to walk away for a minute and come back. Remember: this is preventing injury to you, and it could be lifesaving for them. It is urgent that you pay attention to your own mood and temper before you can help someone manage their own.

As for the video, it turns out the person who shared it is a mental health technician. Other areas of the internet, including most of Twitter, have been calling her a nurse. Regardless of her role, it is abysmal when anyone, anywhere in healthcare makes a video or meme that disparages any part of our patient populations. We should know better. We should do better. But, as far as this one goes, it has given a learning opportunity, and an opportunity to take a personal inventory on our own practices and beliefs as we approach patient care. Ensure you are listening actively to your patients, and recognize any sign that they may believe you’re ignoring their concerns. #PatientsAreNotFaking.

To read some of the stories shared under the #PatientsAreNotFaking tag, visit: https://twitter.com/search?q=%23PatientsAreNotFaking

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