Delusional disorder: an under-studied condition
If you want to get into the scientific nitty-gritty, listen to this presentation on delusional disorder by Erik Messamore, MD, PhD, Associate Professor of Psychiatry, Northeast Ohio Medical University. Dr. Messamore compares and contrasts schizophrenia with delusional disorder, explicates the DSM-5 chapter relating to delusional disorder, and he explains the results of several studies relating to prevalence and etiology. The efficacy of medications is also discussed. I note that I have been taking aripiprazole (Abilify) with success.
In some of my posts, I’ve chosen to refer to myself as “crazy”, in reference to my mental health condition(s). I feel OK with this. But am I contributing to stigma by using that term about myself? I hope not, but there is enough of a doubt that I feel that I should write about it. So, I did a little research.
According to the Merriam Webster online dictionary, “crazy” is defined as an adjective meaning 1) full of cracks or flaws: unsound; 2-a) not mentally sound: marked by thought or action that lacks reason: insane; 2-b) impractical; erratic; 3) being out of the ordinary: unusual; 4-a) distracted with desire or excitement; 4-b) absurdly fond: infatuated; 4-c) passionately preoccupied: obsessed.
Well, some of this sure seems to apply (in the context of my mental illness)! So what’s wrong with using the word “crazy”? I’m afraid that I may be contributing to the perpetuation of stigma by using that term in the context of mental health discussions (even just in my blog). There is an icky feeling about it that I can’t ignore. My spidey senses tell me something is awry in using the term “crazy” to describe myself, even on my own blog.
What is stigma?
The basic definition of stigma, per the Merriam Webster online dictionary, is “a mark of shame or discredit: stain”. The dictionary goes on to explain that, “Stigma was borrowed from Latin stigmat- , stigma, meaning ‘mark, brand,’ and ultimately comes from Greek stizein, meaning ‘to tattoo.’ Earliest English use hews close to the word’s origin: stigma in English first referred to a scar left by a hot iron—that is, a brand. In modern use the scar is figurative: stigma most often refers to a set of negative and often unfair beliefs that a society or group of people have about something—for example, people talk about the stigma associated with mental illness, or the stigma of poverty.”
In their work, “Public stigma of mental illness in the United States: a systematic literature review“, Parcesepe and Cabassa explain public stigma to be “a pervasive barrier that prevents many individuals in the U.S. from engaging in mental health care.” They state that “Public stigma refers to a set of negative attitudes and beliefs that motivate individuals to fear, reject, avoid, and discriminate against people with mental illness (Corrigan and Penn 1999).” Discrimination sucks. Thus, I want to be careful to avoid perpetuating stigma in my writing. It would be counter-productive for me to do so.
In their article, “[The stigma of mental illness: Α historical overview and conceptual approaches]“, M. Economau, et al state that, “Regarding lay respondents’ correlates of public stigma…of outmost importance is personal experience/ familiarity with mental illness.” Given this, I hope this blog provides familiarity with delusional disorder and ADHD to help to reduce public stigma. In doing so, I want to be careful not to perpetuate any stereotypes – but I also want to be free to express myself creatively.
Per Penn Medicine News, “Stigma…is a situation that arises when two key ingredients are present: a negative stereotype about a group of people or condition, and actions people take to distance themselves from being associated with that group or condition. Stigma is a kind of social distancing that happens when we perceive a group as ‘other’ and ‘not like us.’”
Further, “…the ideas about mental illness perpetuated by words like ‘crazy’ include the idea that people with mental illness are divorced from reality, irrational, or incapable of making decisions. These stereotypes and the sense of blame they place on a person with mental illness tend to cast people in a category of ‘others’ that few people want to claim as their identity.”
Oh. But what if I do claim it as just a part of my identity – on my own terms? Am I screwing myself over in doing so? Worse, am I hurting others in the process? Clearly, I’m taking a risk of experiencing stigma by disclosing my conditions to the world. Am I thus entitled to use the word “crazy” about myself if I please? Or is it damaging to others like me to do so?
The other “C word”
In her article, “No, You Shouldn’t Call Someone ‘Crazy.’ But Do We Have to Ban the Word Entirely?“, Dr. Jessica Gold concludes that “At the end of the day, there aren’t universal rules about whether and how we should use the word crazy.” She goes on to compare the word “crazy” with curse words.
This makes me think of the “time, place, and manner” doctrine of the United States Supreme Court. In Cox v. Louisiana (1965), Justice Goldberg delivered the opinion and stated, “From these decisions, certain clear principles emerge. The rights of free speech and assembly, while fundamental in our democratic society, still do not mean that everyone with opinions or beliefs to express may address a group at any public place and at any time.”
I personally feel that it’s the context in which the word is used – the time, the place, and the manner – that determines whether use of the word is “OK” in my book.
So, how do you feel about using the term? Please share your thoughts below!
I first recall episodes of skin picking, or dermatillomania, at the age of 13. I went straight for the little bumps on my arms, above the elbows. Especially on the right side. Search and destroy.
The skin picking got worse over time, and I moved onto other parts of my body including my legs, but the compulsion to skin pick would come and go. I’d turn to skin picking as an escape, especially when bored or anxious. I believe it gives me a dopamine release, like scrolling through Facebook. According to LumenLearning.com, “Studies have shown a linkage between dopamine and the urge to pick.” You know the feeling when you feel like you’re sucked in, and you can’t seem to look away? That’s what it’s like for me. It’s hard to stop once I’ve started.
I have used make-up to cover up the redness, but I’ve given up on that now. I only bother with makeup on my face. It’s otherwise too much effort, and it gets on my clothes. So I leave it be. But it’s still embarrassing. I wear long sleeves and pants that are difficult to roll up when I just can’t stop myself from picking, which helps to a marginal degree.
I’ve looked for answers on the cause of my skin picking. According to Medical News Today, “People with ADHD may develop skin picking disorder in response to their hyperactivity or low impulse control.” However, it wasn’t my ADHD medication that helped me to get the skin picking under control. I believe it was the antipsychotics that helped me, and not until my mid-thirties, when I was diagnosed with delusional disorder, a psychotic disorder on the schizophrenia spectrum.
While I was still ignorant of my psychotic disorder, I had concluded that my skin picking was a manifestation of Obsessive Compulsive Disorder. But that didn’t seem to be accurate, and despite being under the care of psychiatrists going back to age 18, I’d never received an OCD diagnosis. According to the International OCD Foundation, “Skin picking is not considered a disorder unless it is often and/or bad enough to cause significant distress or problems in other areas of life.” And it wasn’t that bad. But it was no doubt problematic. The scars on my arms say so.
A few years ago, my psychiatrist prescribed me antipsychotics. He knew that I didn’t believe that I was psychotic yet, so he mentioned that the medication may help with my skin picking. Nevertheless, I didn’t take the medication, mostly because I didn’t believe I was psychotic. Boy, was I wrong. Of course, it can be hard to understand that you’re psychotic when you’re psychotic.
Eventually, during a major episode of delusional disorder (complete with every subtype of delusion and including audio, visual, and somatic hallucinations), I started taking Seroquel because my primary care doctor prescribed it for what appeared to be post-traumatic stress disorder (PTSD). It only took about two days on Seroquel for most of my persecutory delusions to be debunked. And before I knew it, my skin picking habit changed. Since then, I’ve been taking Abilify to treat delusional disorder, and only taking Seroquel occasionally at nighttime to help with sleep. Both medications are antipsychotics, and I believe they both help with controlling my urge to skinpick.
I still skin pick every now and then. Old habits die hard. But it’s under control now that I’m on antipsychotics. I can stop myself much faster than before. When I realize I’m doing it, I tell myself “one, two, three, STOP.”
Maintaining friendships with delusional disorder and ADHD
I have experienced mental illness to the point where I have experienced hallucinations and delusions while sober, yet I’m stable enough to still function in society (well, I have a job…). Unnoticed for what it is for decades (or at least years), my mental illness insidiously destroyed friendships, relationships, and jobs.
I knew I had ADHD, predominantly inattentive type since grad school. At least that was when I was diagnosed officially. ADHD is known for being taxing on friendships and especially on work relationships. Unaccommodated, ADHD wreaks havoc on work productivity and thus, one’s career. Same goes for psychotic disorders, generally speaking. I was diagnosed with delusional disorder only about two years ago.
Good thing for the Americans with Disabilities Act, giving those of us living with mental illness the legal protections at work that we need in order to maintain employment. The Job Accommodation Network does a good job of explaining accommodation needs for those with ADHD, as well as how to accommodate an employee with schizophrenia.
This tip sheet by the University of Massachusetts School of Medicine provides a chart to help you think through the pros and cons of when to disclose to your employer, if you choose to do so.
But how can we seek accommodation for a mental health condition in our personal lives? It hurts to lose friendships and relationships.
Understanding friends and family are saints. I find that some people can intuit my needs, while others need to be communicated with. Unfortunately I couldn’t provide a full disclaimer until recently.
How to accommodate a friend with ADHD is already somewhat documented. Patience is key, in my book. In her article, “How to Support Someone with ADHD“, Bridget Freer suggests that “studying up” on ADHD, including learning about its symptoms, is essential for supporting someone with ADHD because “these symptoms can easily lead to misunderstandings, frustrations, and resentments building up between you.” Well, they can’t “study up” on something they don’t know is present.
When it comes to parents and other close loved ones, they already know you’re “different”. However, when it comes to new friends and colleagues, disclosure of the condition(s) is necessary (or they will find out the hard way). Finding out the hard way is how resentments build up.
Is it worse to be “the person who self-disclosed as having [mental health condition]” (and whatever that means to them), or, “the person that is always late/ unprepared/interrupting/laughing inappropriately/spaced-out, etc.” (for whatever reasons they can only imagine)?
When it comes to friends/family, of course I’m going to self-disclose about my ADHD. But, disclosing to colleagues is trickier – especially when it comes to disclosing a psychotic disorder to boot. This is largely because of the stigma, which is worse for psychotic disorders than ADHD, in my opinion.
How to accommodate a friend with delusional (or other psychotic) disorder: there is some info on this available, mostly pointing at how to gently guide them towards professional help. BrightQuest Treatment Centers offers some tips on caring for someone with delusional disorder, including, importantly, educating yourself on the condition.
This would lead me to believe that one of the most important things we can do, whether it be in a professional or personal context, is to simply disclose the diagnosis. Understanding the diagnosis is preliminary to adjusting ones behavior and expectations accordingly – and sometimes people need a “why” in order to make sense of what they’re being asked to do.
Even when faced with employment termination otherwise, disclosure takes courage, given the stigma associated with mental health conditions (if for no other reason). Friendships don’t have a written disciplinary procedure they must follow like my employer does. So I can’t wait until they call me into their office to disclose my conditions. I need to do it before the symptoms show, to avoid resentments and misunderstandings.
Finding a non-awkward time to bring it up is not necesarily going to happen, so I just do it, ideally when I find time alone with the person. I usually feel relieved after I say it, and I feel it brings me closer to people the more I talk about it with them.
Diamond in the Rough
In her article, The Three Cs of Disclosing Serious Mental Illness at Work: Control, Conditions, Costs, Dr. Baldwin states that “The disclosure decision is multifaceted, organized in dimensions of control, conditions, and costs. Control refers to the extent to which a mental illness is concealable, so that a worker may choose whether to disclose. The conditions workers impose on disclosure determine when, to whom, and how much they choose to say. The costs, both monetary and emotional, are a manifestation of the pervasive stigma associated with mental illness.”
This reminds me of a diamond. I feel like I couldn’t really shine at work until I had accommodations – and especially, the ability to come in to work at the time I’m ready to begin (a flexible arrival time). This probably looks bad to anyone that doesn’t know I’m being accommodated. But I’ll take that over getting fired for tardiness.
My disclosure was colored by necessity. I was facing disciplinary action. The conditions were cut by HR, in conjunction with my direct supervisor. They knew something was up with me, but I hadn’t disclosed yet. Lastly, the costs are made clear retrospectively: I had nothing to lose disclosing by that point, but the worry still rested heavy in my heart. It’s always a little uncomfortable disclosing my psychiatric disability. It feels like I’m making an excuse for poor work ethic. I hate that.
Per an article on SmartBrief.com, Mental illness can be more difficult to accommodate than physical illness, in part, because the way it affects someone’s work can differ from person to person, employment attorneys tell the Journal. And stereotypes and stigmas around types of mental illness also may prevent people from receiving what they’re entitled to, according to the Society for Human Resource Management.
Fortunately, I’ve overcome the stigma and allowed myself to request what I need. I also have an understanding employer. My clients benefit, my employer benefits, and I keep my employment. Beautiful.
Delusional Disorder v. Schizophrenia
Per psycom.net, in 2013, the American Psychiatric Association adjusted the Diagnostic and Statistical Manual (DSM-V) to reflect the growing consensus that schizophrenia exists on a spectrum of psychotic disorders. Delusional disorder is on this spectrum. This makes sense to me, as I have had many of the symptoms of schizophrenia, however – quite fortunately – not all of them.
Down the rabbit hole
According to the Merriam-Webster online dictionary, a spectrum is a continuous sequence or range. This brings to mind a quote from The Matrix Trilogy: “You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in wonderland, and I show you how deep the rabbit hole goes.” In fact, while I was experiencing psychosis, I felt as if I had taken “the red pill”.
Going by this spectrum model, how do we know that delusional disorder isn’t simply a mild version of paranoid schizophrenia? A study originally published in 2010 by Andreas Maneros, et al of the Martin Luther University of Halle-Wittenberg in Germany endeavored to answer this question. And, the results of the study, “Delusional Disorders—Are They Simply Paranoid Schizophrenia?” (Schizophr Bull. 2012 May; 38(3): 561–568) had reassuring results:
Significant differences between DD and PS were found: DD patients are, in comparison to patients with PS, significantly older at onset. Less of their first-degree relatives have mental disorders. They less frequently come from a broken home situation. First-rank symptoms, relevant negative symptoms, and primary hallucinations did not occur in patients with DD. Patients with DD were less frequently hospitalized, and the duration of their hospitalization was shorter. Their outcome is much better regarding employment, early retirement due to the disorder, and psychopharmacological medication. They more often had stable heterosexual partnerships and were autarkic. They had lower scores in the Disability Assessment Scale and in Positive and Negative Syndrome Scale. The diagnosis of DD is very stable over time.
The researchers went on to conclude: The findings of this study support the assumption that DDs are a separate entity and only exceptionally can be a prodrome of schizophrenia.
Well, that is a relief. I certainly have no interest in developing negative symptoms, and this study’s results give me hope that my delusional disorder diagnosis isn’t simply a prequel to paranoid schizophrenia. Yay.
Consistent with the above study are the conclusions of Differences between delusional disorder and schizophrenia: A mini narrative review (World J Psychiatry. 2022 May 19; 12(5): 683–692) in which the authors endeavor to ask three questions: (1) Do epidemiological data differentiate DD from schizophrenia? (2) Do clinical features or psychiatric comorbidities differ in DD and schizophrenia? And (3) Are there data that show differences between DD and schizophrenia with respect to treatment response to either pharmacological or non-pharmacological treatment?
We found an overlap between the diagnosis of DD and schizophrenia, with boundaries often very blurred. As characterized in DSM-5, the middle age onset of DD distinguishes it from the earlier onset in schizophrenia. The literature gives a prototypical picture of schizophrenia as one of hallucinations, cognitive, and negative symptoms in addition to delusions, with function deteriorating over time. Relatively good function is maintained in DD. While this disorder is also characterized by symptoms other than delusions (mainly affective symptoms), delusions predominate. Treatment response to antipsychotic medication appears to be similar in the two conditions, although DD patients, as a group, are older, and would be expected, as one study has shown, to require comparatively lower doses to achieve symptom reduction... Specific symptoms, when targeted by cognitive behavioral therapies, respond in both DD and schizophrenia, although efficacy trials in DD are, to date, limited.
The content of delusions seems more understandable in DD than it often is in schizophrenia but the major theme is one of persecution in both conditions. In general, the prevalence rate for delusional disorder is significantly lower than that for schizophrenia.
Based on all of this information, I feel it’s safe to conclude that delusional disorder isn’t simply “schizophrenia light” – they are distinct diagnoses with distinct characteristics, however overlapping those characteristics (or symptoms) may be.
It’s not working
A Beautiful Mind
I found myself deeply relating to the main character of this film. I strongly recommend this film to anyone who wants to learn more about what it’s like to experience psychosis.
I too have suffered persecutory delusions and have had hallucinations (and have been a graduate student at a prestigious university). In fact, I thought I was receiving subliminal messages from music and videos, much like the main character of this film thinking he was cracking codes from newspapers.
My biggest takeaway from the film is that psychiatric medicine has come a long way – I am so grateful that the medicine I needed was available to me when I was ready to start taking it – and that electroconvulsive therapy is no longer the norm.
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