NPR recently reported on a study in Nature Communications that provided new insights into long COVID. It’s a real disease, and patients aren’t making up these symptoms.
The study “Muscle abnormalities worsen after post-exertional malaise in long COVID” explored the biological factors contributing to a common symptom of long COVID called “post-extertional malaise.” This “is associated with a worsening of fatigue- and pain-related symptoms after acute mental or physical exercise.” By comparing pre-and post-workout data from patients with long COVID and control patients, researchers found biological factors that contributed to patients’ “limited exercise capacity and post-exertional malaise.”
These findings suggest not only that patients aren’t faking symptoms, but, as the NPR story points out, providers should think twice before advising long COVID patients to hit the gym.
The fear that long COVID patients are faking it is not new. Last July I had an interview on this topic with disability law professor Doron Dorfman. Dr. Dorfman studies the phenomenon called “fear of the disability con.” He and colleague Dr. Zack Berger recently wrote a paper in New England Journal of Medicine on long COVID and the widespread fear that patients are faking symptoms. He describes the impact of this fear on the day to day life of people with disabilities, and what health professionals can do about it.
It’s Disability Pride Month. Today I talk with Professor Doron Dorfman who specializes in disability law. Dr. Dorfman tells me about the widspread fear that disabled people are “faking it,” the impact of this fear on the day to day life of people with disabilities, and what health professionals can do about this.
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Anne Marie: I’m live via Zoom with Dr Doron Dorfman. Dr Dorfman is an Associate Professor of Law at Seton Hall University Law School. He specializes in health law, disability law, and employment law. he is going to talk to us today about the relationship between providers and their patients and how the law fits into that. Dr Dorfman welcome to the show!
Dr. Dorfman: Thank you so much for having me.
AM: Thank you for being here with us today. I’m excited to have an attorney on the program who is able to talk about disability law. Because that is something that is on the minds of a lot of people, especially this month. So I’m going to go ahead and jump right in. What is the issue or problem that you are facing related to communication or patient education?
DD: Even just communication with people who are not physicians about disability law could be difficult. And there seem to be a gap between how people think of disability, and the different–there’s multiple legal standards that apply in disability law. And as a law professor, and a legal academic, I will tell you that the legal definition of disability under the Americans with Disabilities Act–which just celebrated its 33rd anniversary–is much broader than people might think. Now it’s also very important for me to emphasize that the ADA, the Americans with Disabilities Act, is an anti-discrimination law that protects from discrimination in the workplace, and in places of public accomodation like movie theaters or stores. And the definition of disability is different under the ADA then the definition that we have under the Social Security Act. When the Social Security Act determines eligibility for benefits. And there the definition of disability is narrower and is related to the inability to work.
AM: Thank you for that. Thank you for starting there. Because that’s you are speaking to what I thought disability was, and it is closer to what the Social Security Act has in it. And what you’re saying is that it’s commen, people thinking it’s that narrow, is common. The American for Disabilities Act not only is broader, but the Americans with Disabilities Act is an anti-discrimination law specifically.
DD: Right. and the definition under a disability under the American Disabilities Act, under the ADA, is consisted of three conditions or three prongs. The first one is that we need a physical or mental impairment that substantially limits one or more major life activities. We need a record of that impairment. And a person could also be regarded as having such an impairment. What I want to focus on today is what is a major life activity that an impariment needs to limit. And I want to say that it’s a very broad category that includes professional activities, like for example, someone who is screwing screws in the workplace or is talking over the phone as part of his job. This could involve disabled employees as well.
Ok
But this definition of a major life activity also includes more mundane tasks, like standing or breathing. And it’s a broad definition that includes all of those activities a person does when going to work–even if the activity is not the actual act of working.
So how is this an issue for patient communication?
So what it means is that, when a patient comes to see a doctor, to ask them for a note that will help them, for example, get workplace accommodations, it’s important to understand that Physicians are gatekeepers for allowing disability rights to actually manifest on the ground. So if a patient comes to the doctor and says, “I can’t stand, I can’t breathe, I can’t talk over the phone,” the physician might think: “well, you might still be able to do your job.” And they might not give the patient the note they need in order to get the accommodation. So it’s an issue for communication, because physicians who do not fully grasp the extension of the legal definition of disability under the ADA, will stop right there, and say “well, this really is not something I can help with, this is not really a disability that I should prescribe accomodation to, or give a note for the person to get an accomodation.” And that, you can imagine, could very devastating the patient who’s also an employee.
Right, of course it would be! That makes a lot of sense. So how have you been facing this significant issue?
So there is a phenomenon that I have been researching for a few years now and which I call “fear of the disability con.” Con like con-man. It’s the widespread concern that disability law is constantly being abused by, quote-unquote, “non-disabled fakers.” Everyone is trying to get something more, an unfair advantage, especially in our competitive and capitalist society.
Yeah
And it’s not just about people cheating or abusing Social Security. You can see it everywhere you go. So think about parking in disabled parking spots that are closer to the entrance. And how many people are being shouted at. And how people, how many people who actually park in those places are being suspected of “faking it.” Think about people who receive more time on exams in college or universities. Or think about people who use service animals, who other people think that they’re pets when they take them to other places that do not allow pets. So there’s this idea of “fakery” that’s just, it’s very widespread. And having a disability is seen by a lot of people today as having a golden ticket to getting something extra. When in reality, accommodations–which are another invention, another development in the American with Disabilities Act–accommodations are there to level the playing field for people with disabilities.
Thank you for that. I just, that really just blows me away. “The fear of the disability con.” And how widespread you’re finding it is. And that it’s something that any one of us could harbor.
So what I would like just to say about it, you know, if we want to you know talk a little bit deeper about the topic, is that fear of the disability con is very deep. It’s very ingrained. It’s a prominent cultural phenomenon that really plays a big part in how disability rights law is being practiced on the ground.
It’s everyday people going up to those folks on the parking lot and saying, “do you really need to park here?” So we’re not just talking about how the law is practiced by attorneys, we’re talking about, like every one of us has the potential to be acting on or implementing what we think of as disability law.
That’s exactly right. And that’s exactly the meaning of this research, right. That’s us in everyday life are enforcing and creating disability law, everywhere we go. Right? Think about the security guard who doesn’t allow the person with a service dog to enter the place, right? So yeah, you just hit the nail over the head with that.
So what are you learning from your research? You’ve been working with this for years, so what are you learning from facing it in this way?
Yeah, so I have a new New England Journal of Medicine article that I’ve written with Dr. Zack Berger from Johns Hopkins. And what we’re trying to do is to get physicians to think about their own role as gatekeepers, and how it relates to health communication, and to the fear of the disability con. And in this article, we’re talking about specifically about Long Covid, which is a new condition that is considered a disability that is also hard to diagnose, and it is also less visible. And we know with less visible disabilities sometimes increase the fear that someone is faking a disability.
I’m going to go ahead and link to that New England Journal of Medicine article in our show notes. But what are the next steps for you, or do you have words for people who are facing this issue? For providers who are being asked to make these accommodations or write these employers’ notes?
Yes so we’re trying to give some advice to physicians to use their power to get people with disabilities–their patients– their rights. So for example, we urge physician to use the diagnostic code for Long Covid which is currently being underutilized. We believe that as more physicians use this code that would increase the legitimacy of Long Covid as an independent diagnosis.
Do you happen to know that code off the top of your head?
Yes it’s UO9.9
Just in case you need to know, listeners, just in case, UO9.9. Thank you for that, thanks for that code. So that’s a great piece of information. What else are you telling physicians?
We’re telling physiscians how to describe the disability, the health condition, here, long Covid, in their doctors notes. And a physician who can’t really find a formal diagnosis for the patient, what they can do is to rewrite the narrative that the patient is telling them, using medical vocabulary. And that will help employers understand that there is a record of the disability. Remember, in the ADA definition, there needs to be a record of the disability. So there is a real medical issue at play here. And physicians need to remember that also they are, then, themselves, are not immune from “fear of the disability con.” That this bias might have crossed their minds when they see patients and they might think that the patient might be faking it. And I think what we’re doing today is we let physicians know that this bias, this idea about fakery and abuse of the law, exists. And now they that they are aware of it, they can hopefully, you know, get past it. And specifically with conditions like Long Covid, but not only with Covid, help people with disabilities get their rights and promote disability justice and disability equality.
Thank you so much for being on the show today!
Thank you very much for having me.
Dr. Doran Dorfman, Professor of Law at Seton Hall University Law School. Thanks again to Dr. Dorfman for sharing his research and remarkable insights. This has been 10 Minutes to Better Patient Communication from Health Communication Partners. Audio engineering by Joe Liebel, music by Joe Liebel and Alexis Rounds.
