Understanding Factitious Disorder and Medical Skepticism
Living with Chronic Pain and Neurodivergence: A Personal Perspective
This blog post was originally a podcast episode. You can listen to it here, if you prefer audio over written word.
The Challenge of Constantly Being Told You're Wrong
I think it's important to talk about how hard it is to live in a body or a mind that constantly gets things wrong. So hear me out. If you live with chronic pain, if you have any kind of neurodivergence—from autism to ADHD to OCD to bipolar disorder to any of the diagnoses that fall under neurodivergence—the world in which we live constantly tells us that what we're thinking is wrong.
You know, with chronic pain, we often hear we are "catastrophizing." This is the clinical research term that people use when they're trying to understand the experiences of people with chronic pain. Catastrophizing is, you know, basically making a catastrophe out of something that isn't actually that bad.
This is hard to live with. It's this lens which constantly—because the fact of the matter is the pain feels the way it feels and is debilitating on our worst days and just constantly there and annoying on our best days. There's no faking that. You're not faking what you're feeling.
Understanding Factitious Disorder and Medical Skepticism
I was very disappointed to attend a CEU (for people who are not therapists or medical professionals, a CEU is a continuing unit of education, and we have to go through continuing education hours each year in order to maintain our clinical licenses). I attended a CEU on factitious disorder.
Factitious disorder is basically—it goes along the lines of hypochondria, somatic symptom disorder, malingering—all of these really, really what have become nasty terms, because it is now equated with somebody lying about their health in order to gain something: attention, money, or whatever it is.
And so, it's not that these people don't exist. Of course there are people out there who truly don't have anything wrong, but they see a cash grab. If you've watched "Apple Cider Vinegar," you know exactly what I'm talking about. They learned that leaning into a medical diagnosis, even if they don't have it, really gets their emotional or financial needs taken care of.
I am not saying that this doesn't happen. I just don't know a single person in my entire life that this has ever been the case for. And I work entirely with people with chronic pain and chronic illness. I've never once worked with somebody—in my hundreds of clients and people in my own life, even people who I grew up thinking were hypochondriacs because as a kid, that's what I was told—who didn't truly have something wrong with them. It's just that the medical system didn't have the answers that person needed.
My Journey Through the Wellness Movement
This leads us into the blow-up of "Make America Healthy Again" and the wellness movement. Now, I was in this movement ten years ago. It wasn't called that at the time. I had no idea it was a movement. I just decided to go to a college down here in Georgia. I moved from Connecticut to Georgia because I just wanted to get away from where I grew up.
I looked for a school that had an accredited dietetics program, ended up at Life University, and that just so happens to be a chiropractic college. So I basically was smack dab in the middle of holistic wellness culture. And I really truly believed things like our government was trying to poison us with Red #40 in all our foods, and MSG, and what were some of the other big ones at the time—it was seed oils. I mean, everything that's blowing up now in the wellness industry, that was my life ten years ago, and I really thought that.
The Problem with Research Interpretation
Basically, I kind of had moved on from that bubble. I went to grad school. I learned—I'm not a research scholar by any means, but I learned a little bit more about how to actually read scientific papers and how to look for bias and how to also look for replicated studies in order to prove or disprove a hypothesis. And I think that's the biggest problem with the wellness scene right now.
And again, ten years ago when I was in it, basically if the study was funded by anything that was connected to Big Pharma or, say, McDonald's (they do some research stuff), then that meant the entire study should be thrown out the window. And that's just not true. Yes, that is a pretty big conflict of interest, but let me just say: if you voted for Donald Trump because of RFK Jr., and you are hoping that they are going to get rid of corruption based on removing conflicts of interest, I just don't really understand how that's the case. When Elon Musk is in charge of Doge and his companies were being audited by the government, there are so many conflicts of interest there with the government and his contracts. Same thing with RFK Jr.—he has a lot of conflicts of interest based on his previous work experience. And again, I just don't know how you can say that this is any better.
Media Sensationalism and Medical Reality
So I digress, because I think that's really important, but my point back to people who are "faking it" versus not faking it: the media is always going to grasp onto sensationalizing things because that's what's going to sell. And while I cannot say what the motivation was of the people putting on this continuing education unit about malingering and factitious disorder—I can't speak to their motivation—to me what it felt like sitting there was "let's go ahead and talk about this disorder" because it was a residential mental health facility putting on the CEU. So of course they want to basically promote their company and say, "Hey, this is a disorder that we work with."
But the problem is they didn't once speak to the rate—like how many people this is occurring in in the country. And so it made it look like basically all of us with chronic health conditions that have not gotten answers from doctors and have been searching for answers for five, six, seven years—it makes us look like we are the ones they're talking about. And you have to know that that is not true.
Understanding Pain and Validation
Because when your therapist or your medical doctor is looking at you saying, "Your labs are normal, nothing's wrong, I don't know why you're in pain, we can't give you pain medication," blah, blah, blah, and you start to feel like "maybe it's in my head, maybe I'm crazy," please know all of these things are true:
One, you're not crazy. You are feeling the pain that you're feeling. Two, our medical system does not have any way of giving you an exact answer for your pain because pain is a subjective experience. It is both real and subjective. You feel what you're feeling, but two people can have the exact same condition and feel entirely different pain in entirely different areas of their body.
And the wellness industry—think chiropractic, massage, functional medicine, naturopathic medicine, therapy even—it offers guidance. It offers the social piece that is incredibly important in the biopsychosocial model of healing.
And so when you live in a body that constantly gets told, "We don't have answers for you" or "Your pain can't really be that bad," or your brain says over and over and over again because you have something like OCD that tells you the same thing on repeat—that you're right about this thing or you're wrong about that thing—and the people around you are like, "What world do you live in? This is not the reality that we live in."
You know, in our world, like in someone who doesn't have OCD or really any neurodivergence, it's really easy for them to kind of hear something one time and then just be like, "Oh, okay," and move on with their day. A lot of times neurodivergent people need to have a lot of extra reassurance. And so: one, the world often isn't set up to reassure us over and over and over again; two, the world is not only not set up to reassure us of the things we want to be reassured about, they are often also telling us the opposite.
The Reality of Medical Gaslighting
And that can be really confusing in your brain because it constantly makes you question your reality. This is why "medical gaslighting" has become such a term. Some people really hate it because they feel like it's not the real meaning of gaslighting, which was very vindictive. And I don't think most medical doctors are being vindictive, but the problem is it still feels like our reality is being questioned over and over and over again. And that was what gaslighting was—it was somebody who was vindictive in making you question your reality, and it was very on purpose. The only thing that's changed now is it's no longer quite on purpose by the individual sitting in front of you.
But it wouldn't be totally wild for you to make the assumption that our system is set up to make you question whether you're right or wrong, especially given that insurances don't want to pay for anything. So of course they send denial letters. They tell you that they don't care what your doctor's recommendation was. This is what they will or won't pay for. All sorts of things. So it's very systemic, and it is not your fault.
Conclusion: The Impact on Personal Growth
I think I started this off by trying to give a lot of compassion to those who struggle with feeling like they're wrong all the time. This can actually make it really, really hard for you to change—to change your thought process, to change what your emotional patterns are, to change to become more emotionally regulated, to regulate your nervous system, to do all of these kind of health and wellness things. It can be really, really hard when it feels like your reality is constantly questioned.
So, I would love to hear what your experiences are on this, and I've also created a journaling prompt worksheet for you—you can find the link for that here.
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Meet Destiny - The host of The Chronic Illness Therapist Podcast and a licensed mental health therapist in the states of Georgia and Florida. Destiny offers traditional 50-minute therapy sessions as well as therapy intensives and monthly online workshops for the chronic illness community.
Destiny Davis is solely responsible for the content of this document and the views expressed herein.
