EPISODE 14: MARCELLO AND LISA
[Andy Miles] Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Studio C.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
On this episode, we hear from 24-year-old Marcello, who, prior to being severely injured by a prescribed antidepressant, was a healthy and happy college sophomore at The New School in New York City. Just days after starting the prescription, he suffered a catastrophic adverse reaction to the medication that led to akathisia, inappropriate polypharmacy, and years of suffering.
[Marcello] The experience for the sufferer during all of this is nightmarish. It’s unbelievable because you know what’s happening. You know that there’s incredible injury and you also know that there’s likely no help.
[Andy Miles] We also hear from Marcello's mother, Lisa, who has watched her son suffer the devastating effects of akathisia for more than two years.
[Lisa] What it looks like from the outside is like a horror show. It’s unfathomable. You know, he’s a very normal looking, functioning young man and suddenly he’s rocking, grimacing, in torturous pain as though someone were torturing him. I know that people with akathisia use the word torture a great deal, and it’s apt.
[Andy Miles] We’ll have Marcello and Lisa's full story in a moment.
MISSD would like to thank you for listening to this monthly podcast, which we're pleased to provide, along with all of MISSD's educational materials, free of charge. After today's podcast, please check out our latest video which was released February 23 and available on YouTube. The collaborative public health video breaks new ground, given that it marks the first time akathisia and medication-induced suicidality are mentioned in a suicide prevention video. When we recognize the symptoms of akathisia and are aware of the various drugs that can cause it, we can help reduce akathisia suffering and avoidable deaths.
We encourage you to share the video and this podcast, as well as to take our free, accredited course at MISSD.LearnUpon.com, and consider supporting us through a tax-deductible contribution at MISSD.co.
And now my interview with Lisa and Marcello. We spoke in January over Zoom.
Andy Miles: Marcello, you're now well over two years off the drugs and still deep in the struggle.
And Lisa, you've been witness to all of it.
Before we go back in time and talk about how all of this came to be, can you tell me what life is like today as you both deal with the akathisia that has afflicted Marcello?
Marcello: Sure. So, at this point, a little over two and a half years in, it’s still very much a holding pattern of, you know, myriad symptoms, daily, constantly, as well as an undercurrent of what I can only explain as brain injury. You know, it’s so abstract that to try to describe some of this stuff, to put it into words almost doesn’t work. But I experience akathisia on a constant basis, and every day is a challenge that I never could have imagined prior to this injury.
Andy Miles: And before I have you comment on that as well, Lisa, Marcello, are you experiencing – like, is each week different from the last in terms of the sort of panoply of symptoms that you have and the severity and that sort of thing?
Marcello: So every day is mostly the same, which is unbelievable on a constant basis.
Andy Miles: Yeah.
Lisa, what about your day-to-day?
Lisa: Well, I suppose it starts out with how bad is he today, which is a terrible way to start your day. (Laughs.) As he describes windows and waves, I see windows and waves, but what I see often doesn’t matter because I will – if I were to presume that well, it’s a little bit better today, he’s maybe cooking something or taking care of the plants, it does not, unfortunately, reflect that he feels any better, which is a very – it’s one of the many, many tricky things about akathisia. I can’t make any assumptions or assessments, although I’m very, very glad for a day that even looks better. (Laughs.) If it looks a little better, great, you know. But every day begins with a certain apprehension, a kind of measuring of the temperature, how is he, and sometimes it’s quite visible that there’s a lot of pacing, a lot of clenching; the movements can be more dire from one day to the next. And then, every once in a while, there’s a window. I count them like pearls; they’re very precious, where there have been a couple of times in the past year where we’ve actually driven up to a mountaintop or gone someplace out into nature or he’s been able to cook up a wonderful meal. I mean, there are moments.
Andy Miles: And it’s interesting that you are sort of witnessing more of a variation day to day, but, as you said, Marcello, it’s — you know, every day kind of, in many ways, seems the same.
Marcello: Yeah, it’s definitely – you know, the difference between severe and less severe is not necessarily obvious to an onlooker. You know, most of this is an internal show, which makes it all the more, you know, difficult to sort of get a – you know, have people gauge around you what’s going on. You know, I’m sure many people on some of my worst days with akathisia would look at me and likely say, you know, he seems OK.
Andy Miles: So to back up then, Marcello, you're 24 years old and just three years ago you decided to take some time off from school, do some traveling and kind of figure out what to do next, and you began having what you called garden variety anxiety and some trouble getting moving again after taking the time off and thought it would be beneficial to see a psychiatrist. So if you could pick up the story from there and give us that backstory.
Marcello: Yeah. I think that pretty much covers it. I just spent some time traveling, and like many people my age felt some trepidation and anxiety about what was next and, you know, sort of had trouble getting going again and thought that it would be beneficial to at least see a psychiatrist with an open mind. I’m not someone who has in the past been, you know, so open to the idea of medication. I think seeing a lot of my friends have success with medication sort of motivated me to at least try it, because I think we think that there’s no harm in trying. Right? There’s no harm in trying an antidepressant; if you don’t like it, you get off.
Andy Miles: And you also told me that at the time all of your friends had either been helped by psychiatry or were on a psych med and doing well, and in fact, some of your friends were becoming rich at a very young age, I mean one in particular. So you were only seeing positive outcomes.
Marcello: I was only seeing positive outcomes, yeah. Yep.
Andy Miles: So what – I know that you were prescribed an SNRI and had what you called a paradoxical reaction to that about 10 days in, and from there it was just this spiral of being poly-drugged to try to suppress the akathisia and the damage that was occurring from the medications.
Marcello: Yeah. The first drug that I was prescribed was Cymbalta, which, as you said, is an SNRI, so, similar to an SSRI, works on norepinephrine as opposed to serotonin, or in addition to serotonin.
Lisa: So you missed a dose and how did you feel when you missed the dose? What was the first –
Marcello: Right. So the first indication that I knew something was terribly wrong was I had been hiking with a friend and I had missed a dose of the Cymbalta and took a dose, and this was just before we went on a hike and had thought I’d caught some sort of insect bite or something along the trail. Vertigo, extreme, extreme nausea, extreme dizziness – it felt like acute poisoning. It felt like I was being killed by something, completely, completely different from any symptom of anxiety that I had ever experienced. So that was immediately ruled out for me.
Andy Miles: And I think you mentioned an inner terror.
Marcello: Yeah. Again, this subjective component of akathisia that people talk about as terror takes on many forms. There’s obviously terror caused by what is happening, caused by not being able to understand what’s happening, and there is inherent terror, chemical terror created by the injury itself, like I said, completely different from anything I’d ever experienced with anxiety, just not comparable.
Andy Miles: And you went to the hospital and you were diagnosed there with heat exhaustion.
Lisa: Right. They offered him an Ativan and sent him home. He came back to L.A. and his psychiatrist switched him to Prozac. There was no mention of akathisia at this point. She switched him to Prozac. He was on Prozac for two weeks and then he experienced another episode.
Do you want to talk about that?
Marcello: Yeah. I should mention that the hospital made no effort to investigate any medications that I was on, so that was overlooked initially.
Andy Miles: Was that in your mind?
Marcello: Truthfully, at the time, no. I don’t think it was until the effects of the adverse reaction had cleared somewhat. I could tell that something was very wrong and very different in the weeks following, which is why I, you know, in hindsight stupidly agreed to get on Prozac, at the suggestion of my psychiatrist who didn’t know anything about what was going on. And that is when I noticed textbook akathisia for the first time was just a few doses into Prozac.
Andy Miles: And so at that time was that the terminology that you had or was it, in retrospect, akathisia?
Marcello: You know, I think I had done some research on my own, just fishing around trying to make sense of what had happened. There’ s far less medical literature on adverse reactions than there is on akathisia, it seems. So I can’t remember exactly – I think I found the word akathisia before I had had the extremely noticeable akathisia reaction to Prozac.
Lisa: I remember the timeline a little bit differently, or at least in terms of my – because I remember that first time I heard that word and we were in Portland and Marcello had an interview for college the next day, and he experienced again a kind of inner and outer restlessness, terror, and, as he described it, a kind of anxiety that was a hundred times worse than anything he had ever experienced that felt like anxiety before. I called the psychiatrist and I remember this clearly. She said, gee, this sounds like akathisia. That was the first time I heard the word akathisia. Then we went back to see her in L.A. She prescribed Xanax. I wasn’t privy to the discussion. He went on a trip, a hiking trip, again was not himself, felt just terrible, and, you know, this was – hiking had always been his joy and his happy place – came back, and then we had a family meeting with the psychiatrist and –
Marcello: At that point I was in full-blown akathisia.
Lisa: Yes, you were.
Marcello: It was incredibly obvious what was going on, yet, going to the psychiatrist with this, we were, you know, essentially gaslit, which is, again, not uncommon. You know, you hear this is your underlying anxiety coming up; this is – you know, there’s no way that this could be coming from the medication is what we were repeatedly told by –
Lisa: She told us that we could not – he could not get akathisia from antidepressants, that that was very, very, very unlikely; that they came from – you could get it from an antipsychotic, not an antidepressant. She said that what he was experiencing was likely somatic.
Andy Miles: This was the same woman, though, who had said over the phone, gee, this sounds like akathisia?
Lisa: Yes.
Andy Miles: So to her mind, it sounded like it but it wasn’t akathisia.
Lisa: Exactly, or maybe she thought about it some more, but yeah, this was the same person who said it sounds like akathisia. She said it was not akathisia, it was somatic, suggested we get a second opinion. While we were trying to wait and find a person to get a second opinion, she was still prescribing medications for him, for the movements.
Andy Miles: So at this point, Marcello, you say that you had done some research, you had familiarized yourself with akathisia, had identified your symptoms with that condition.
Lisa, what was your sense and your sort of intuition at this point in terms of what was afflicting your son? You were getting this sort of contradictory information from the medical profession. I assume that you were probably doing a bit of your own research or at least –
Lisa: I was just starting, just starting. I knew that something was very wrong. I have – I still have videotapes because I would tape it – tape him in order to call the psychiatrist or when we left her we called our family – an old family doctor; I sent him the tapes. What it looks like from the outside is like a horror show. It’s unfathomable. You know, he’s a very normal looking, functioning young man and suddenly he’s rocking, grimacing, in torturous pain as though someone were torturing him. I know that people with akathisia use the word torture a great deal, and it’s apt. So at this point in time, I knew something was frighteningly wrong. We began what I now consider to be a Kafkaesque journey towards a diagnosis.
Andy Miles: And before we go there, I wanted to just back up a little bit and ask you what your initial reaction was to your son being prescribed the initial SNRI. Did you have any concerns or did you kind of share the same sense of confidence that he had that this probably would do something positive?
Lisa: I am not someone who is prone to going to a medication first. I felt that he could heal this, what he was going through, through exercise, through diet, through supplements, through therapy. I did not think he was mentally ill. I thought what he was going through was in some sense age-appropriate. He was becoming a man and he was asking questions that a lot of young men ask: Who am I? Where do I fit? What’s next?
Andy Miles: Well, and prior to taking the medication, you write, Lisa, that Marcello had never gotten into a physical fight, never had a suicidal urge, and had always had a warm, close, and playful relationship with his father, who slept in his room now to keep watch, and loved him more than life itself.
Lisa: Yes.
Andy Miles: Could either of you address the question, you know, kind of elaborate on the sort of pre-drug times and the pre-akathisia times in terms of characterizing the person that Marcello was at that time?
Lisa: He was funny, charming, original, outspoken, said what he thought. He had a lot of friends. He was adventurous. He climbed mountains. He backpacked through Europe on his own. He was a night sky photographer. He would go up – when we were living in Oregon, he would go up to the top of a mountain at three in the morning to get a good shot of the Milky Way. He was very open about his emotions. He was someone that I could talk to. He was not closed off. Creative, loved to cook, loved music — seriously loved, loved, loved music, which is so painful to think now that music to him sounds like cacophony. Charming, honest, just a great kid, very, very popular, you know, very charismatic.
Marcello: From my perspective, I had my health and now I don’t. You know, akathisia and medication injury leaves you with almost nothing to give for yourself or for others. I can’t imagine going through this as a parent, going through this having to care for someone else, because you are unavailable because 100 percent of your energy goes into making it through the next hour. So I think — in that way, I think, had this happened to me at any other point in my life, I likely would have died. I think because I was already taking time off and was in a transitional period, I think that it gave me enough distance to be able to say, OK, I’m not in a job that I love; I’m not – I don’t have kids; I’m not in school right now. I think there’s so much loss precipitated by akathisia and because of this injury that that would have taken it over the top. So, in a way, I think if this had to happen at some point, you know, this is the time.
Andy Miles: And it seems to me that this period that you’ve been living through these past few years has both strengthened and been a great strain on your relationship.
Marcello: I don’t know that I would categorize it that way. I can’t imagine something more difficult for an individual or for a family, so yeah, there’s strain, of course. But also, I think there’s now more trust maybe that in the beginning maybe there wasn’t when, you know, my parents were hearing the complete opposite from what I was saying in total desperation, hearing the complete opposite from basically the entire medical establishment, which does trickle down to doctors, which trickles down to families, so I think there’s more trust maybe. Not too much good, not too much to come out of this.
Andy Miles: Yeah.
Lisa: He is the strongest person I know. I can’t feel what he feels. There have been times when I’ve had a completely sleepless night. I’ve had moments, I’m trying to say, that I feel I can identify with being unable to control your thoughts. I can identify with that and how maddening that is – maddening. I can’t identify with the pain. I know he’s in pain. But I have such – having had just an inkling, maybe one one-thousandth of what he feels, I know he is the strongest person I know. I know that I could not – I couldn’t do it. You know, I just wouldn’t have the strength to do it, to get up every morning and, you know, go through something that hard.
Has it strengthened our relationship? I don’t know. (Laughs.) Has it? I don’t know.
Andy Miles: Yeah. I want to have you each talk about a metaphor or an analogy that you’ve used.
Marcello, you told me in the previous conversation that we had, preparing for this interview, that the experience of – the experience of you going on this medication and having had what happened to you is like a Band-Aid on a scape and it gives you cancer.
And Lisa, you wrote in your article for Mad in America that in the simplest terms, you could think of it like a peanut allergy.
So I was wondering if you could each elaborate on those metaphors.
Marcello: Sure. Well, you know, it’s no secret that these drugs are being given to people for off-label reasons, for, you know, everyday stress; you know, everyday human experiences are being pathologized and people are being handed these extremely powerful medications that do not come without risks. So I guess my analogy with the scrape on your leg, putting on a Band-Aid and having your leg fall off from the Band-Aid feels apt because I did not go on these drugs for serious issues. You know, not until, you know, pretty recently these drugs were reserved for the severely mentally ill, and only in the past few decades have all of these off-label uses been discovered by the pharmaceutical industry. But people are definitely being inappropriately prescribed and not at all given proper informed consent.
Andy Miles: And I thought the peanut allergy was quite effective in the way that you laid it out.
Lisa: I think I came up with that because I was faced with my friends, most of whom – (laughs) – are on something, or their husbands or their kids are on something, saying, how could this be? “How could this be? Because I’m fine with my Lexapro.” “I’m fine with my Lamictal.” “How could a drug that a class of drugs that I’m fine with produce this kind of result?” To say there was skepticism is an understatement, even among our friends and family. So the peanut allergy simply came to mind because most people are OK with peanuts, but some – if you’re allergic to them, if your body cannot metabolize a peanut, you could die. So it was just a simpler way of explaining to people that we’re all different. We’re genetically different and one person might do fine and for another person, the same medication could be a poison.
Marcello: I have to interject that that is one avenue to try to understand this with. I think it’s overly reductive and simplistic just because of the fact that the drugs are inherently toxic, to anyone. You know, a desired effect from these medications, a numbing effect, which is, you know, the best-case scenario that one could hope from one of these medications, is a neurotoxic effect. You know, the peanut allergy doesn’t really work for me because, you know, peanuts are organically evolved and evolved alongside us, and these medications are chemicals that were created in a lab.
Andy Miles: Yeah. We talked a little bit earlier about the tapering and you did it in a matter of days, and the day after the last eighth of the pill, the outward symptoms started to appear. I have here in my notes that there were purposeless repetitive movements, as if you’d been set on fire, and weepiness, pacing, gruesome images and sounds in your mind and impulsive suicidal urges you’d never experienced before. Does that set of symptoms characterize any given day over the last several years?
Marcello: To some degree, yeah. Definitely. The beginning was far more intense. You know, to say that I am – I’m not out of the woods. I’m not out of the woods by any means. But the first few months off the medication were unthinkable. The only comparison I can really draw is like a bomb went off in my body, and you know, shrapnel is tearing through vital organs and –
Andy Miles: But unlike a bomb, it never stops. I mean, a bomb explodes and you deal with the consequences, but –
Marcello: Exactly. It is a bomb that detonates perpetually. Even in the absence of the medication, which is – to anyone who’s trying to understand this – puzzling, because that doesn’t make sense. Right? It goes against everything we want to think about either a toxin or a medication, that once it clears the system you’re good, and this breaks all of those preconceptions that I had initially when I thought, oh, I could just try this drug and, you know, if it doesn’t go well, I’ll stop it and that will be it.
Andy Miles: And eventually, you started to develop strong chemical sensitivities as well.
Marcello: Yeah. Again, not uncommon and definitely something that I would have been highly skeptical of before this.
Andy Miles: Had someone else told you –
Marcello: Yeah, had someone else said, oh, you know, I have extreme chemical reactivity; it sounds hokey, but it’s very real.
Andy Miles: And what forms does that take? I mean, are we talking dryer sheets and perfume and –
Marcello: Yeah. Detergents, dryer sheets. You know, when we were trying to find a place to live, after moving, new buildings, new building materials would basically exacerbate the feeling of being acutely poisoned to the point where I literally could not tolerate the environment, and it’s – I’ve come to understand that it’s all part of mass cell activation and that there is an innate response in the nervous system to an insult like this that basically activates, you know, these systems that are usually dormant, that usually are not hyper-reactive. Same thing with light sensitivity and sound sensitivity. It’s all just compensatory – you know, your brain and nervous system trying to figure out what the hell just happened.
Andy Miles: What about sitting in front of a computer like you’re doing now?
Marcello: It’s not easy. (Laughs.) You know, I recognize how crucially important it is to talk about this openly and publicly, so there’s – the motivation there overrides the huge, huge discomfort of trying to stay still and sit in front of a computer. Yeah, it makes everything unthinkably difficult and there are so many things that are impossible with this.
Andy Miles: Yeah. Lisa, you started to mention earlier the “Kafkaesque journey” towards proper diagnosis and treatment. I don’t know how much you want to get into the sort of blow-by-blow on that, but is there something – is there some sort of summary that you might –
Lisa: Let me see if I can do it quickly. (Laughs.) Let me see if I remember it.
Psychiatrist number two thought it was somatic. Psychiatrist number three looked at him for five minutes and said, oh, my god, this is akathisia and you better do something about it quickly because akathisia is a pain like no other and people with akathisia are highly prone to suicide. This was the first psychiatrist, the first doctor who understood it, who recognized it, who validated what he was going through, so there was a horror on my husband’s and my part that, oh, my god, it is this, but also a sense of validation.
Where did we go next? We went to an integrative psychiatrist who treated him supplements. But unfortunately, his system was such a mess from the akathisia that the supplements made his condition a hundred times worse. She recommended someone who was micro-dosing medication, thought we should see her. This woman was only seeing patients at a drug rehab where she was the psychiatrist. We went to the drug rehab. It was run by graduate patients; in other words, it was run by people in recovery and that didn’t work out. The place reeked of Clorox. It was frightening. Full of smoke —
Marcello: And also just totally inappropriate. I mean –
Lisa: Totally wrong. We took him home. So we were at a point – we were becoming a little desperate. We saw another integrative psychiatrist who said that pot would be fine. He had an almost psychotic experience on pot. And then he made a suicide attempt and wound up at a very — a leading hospital in Los Angeles. No one could agree on the diagnosis, but they all wanted to give him something. Something. They couldn’t agree on which med but they all wanted to give him something because that’s what you do in a 72-hour hold. You can’t do therapy. You want the patient to go home with the proper medication and the plan. So he went to a place that agreed to treat him without meds. The only problem there was he was required to sit still in group therapy and he was required to get to group therapy on time. Now, he has this thing called non-24, which means he goes to sleep an hour later and gets up an hour later every single day. So he couldn’t be awake for his group therapy sessions. Plus, he couldn’t sit still because he had akathisia. Plus, he did not feel he belonged in that setting because he had a neurological as opposed to a psychological disorder, and no amount of discussing his feelings was going to help him, so he ran.
Marcello: Yeah. The experience for the sufferer during all of this is nightmarish. It’s unbelievable because you know what’s happening. You know that there’s incredible injury and you also know that there’s likely no help. You know, you want to go along with what everyone else is saying in order to not seem noncompliant, basically, because that’s the last thing anyone wants to have your family believe of you. When every single person along the way is saying there is a fix, here it is, it’s a drug that causes akathisia, or there’s a fix, it’s an expensive inpatient treatment program for recovering addicts, and all the while you know that this is absolutely absurd, but the only other alternative is to lose your support structure entirely.
Andy Miles: Yeah. So I know at one point during this time you were told, Lisa, that your son’s blood was on your hands if you didn’t commit him to a mental hospital.
Lisa: Yes. You’re also dealing with friends, friends and family who cannot understand what’s going on. Marcello had a best friend who was extremely concerned for him and thought that he belonged in a hospital. He knew he had suicidal ideation because Marcello was communicating that, and there’s no way that a layperson can understand the difference between ideation, which is –
Marcello: Voluntary versus involuntary is the key point of understanding there, that, for whatever reason, people on the outside of this experience, be it friends or anyone who doesn’t know about akathisia or know about the harm that’s being caused here by these medications, cannot seem to fathom the fact that this causes suicidality. It’s imposed. It doesn’t belong to you. It’s caused entirely by the immense suffering precipitated by akathisia. It’s caused by the neurotoxic effect of being injured this way. It’s unthinkable.
Lisa: So when he ran, he ran to Oregon, where he grew up, and I remember him – he texted me and he said, oh, the air is clear; I can breathe; maybe I’ll have a shot of healing here. [At] the same time, the hospital advised us, the one he had run from, to seek an intervention. They knew someone in the Midwest who would come out and get him in a car or on a plane and get him back to UCLA where they were ready, would be ready with a court order to medicate. This was for my husband and me I think the hardest, most critical, most profound decision we ever had to make: Who do we believe? Do we believe the experts who felt that it was dangerous not to medicate him, or do we believe our son? And we chose to believe our son and we chose to support whatever course of healing he wanted to take because he was at this time 22 years old, he had not seriously hurt himself, and he had never hurt anyone else. He did not suffer from delusions. He was not – he did not meet the criteria for someone who was incapable of reason. And so that’s what we decided to do.
And one of the reasons why I wanted to do this podcast is we are – I’m in a support group online for families, for caregivers of people with akathisia, and one of the key questions that people have is, who do I believe? Do I believe the doctor or do I believe my child? And I am an advocate for believing your child, believing the person who is going through it, because, for one thing, the doctors really don’t know much about akathisia at all. And at some point, he’s a human being. You know, and the idea of forcing medication, which is — the FDA itself deems to be dangerous, forcing someone to take that I think robs them of a very basic dominion over their mind and their body, and we couldn’t do it.
Andy Miles: Is there anything that you want to still bring up in terms of the chronology that you were talking about, Lisa, or is there anything you feel like you didn’t address?
Lisa: Well, I would say that we are still hopeful that continuing research will at least help us have informed consent, true informed consent, which I wish that Marcello had had. And I still remain optimistic that there will be treatments for akathisia. Likely they won’t come from drug company trials and studies; they won’t necessarily be medications. I know he feels differently about this, but, you know, call me crazy; I’m going to keep hoping.
And I also have faith in time. I have faith that the human brain will heal, and I have an incredible amount of faith in my son’s strength to persevere one day at a time.
Andy Miles: Marcello? Do you share that faith?
Marcello: I know and believe that the only way to get to the other side of this is through it. I know that there’s no quick fix. I know that there’s no drug fix. I know that there’s no operation, procedure that’s likely to fix this level of damage. I think giving your body and your brain as much distance from the toxins that caused the injury in the first place is first-line. That is first-line treatment. And it’s an unsatisfying answer for anyone in this, to say the least, but that’s what I believe in because I know that there is no immediate fix.
I think it’s important to recognize that symptoms of akathisia can and often do look like symptoms of a mental illness and it’s an incredibly important distinction to make because to the person experiencing akathisia, it is not – to compare this to any form of anxiety or depression or darkness is – it’s incomparable. But unfortunately, on paper, a lot of the symptoms can sort of overlap with those of mental illnesses. And I think this is likely causing a huge number of people to be either misdiagnosed or entirely gaslit to their deaths.
Lisa: Yeah, that’s true.
Marcello is committed to raising awareness about this cause and reversing what he says has become "deeply ingrained into the Zeitgeist" and the perception that "being on a psych med is trendy," which he says is quite prevalent on social media and among people his age.
Lisa, a successful and prolific playwright, is currently working on a play about this experience, which you can hear more about in the Podcast Extra available at www.studiocchicago.com/akathisia-stories [and directly below]. There you can also find a link to the new MISSD video that I mentioned earlier in this episode.
You've been listening to the “Akathisia Stories” podcast. We'll have another episode next month. If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast, rate it, and subscribe.
I'm Andy Miles, and I'd like to thank Lisa and Marcello for their time and candor, and I'd like to thank you for listening.
PODCAST EXTRA
Lisa: I’m writing a play about our story. I’ve written a first draft. I know this sounds incredible but it’s actually very funny at times because this has been an absurd experience and that’s just the way my mind works. I seem to find comedy not in the situation but in human beings. I start out by breaking the ice by asking the audience, you know, just to break the ice here, how many people took an antidepressant this morning? Did you take a Lexapro or a Zoloft or an antianxiety, maybe popped a Klonopin? And, you know, I say, I know how you feel; I have this one quarter of a Xanax; I’ve had this thing for, like, a year, and boy, you know, with COVID and all, I would have taken it in a heartbeat, except I have this son, you know, and I see what’s happened. In other words, in the play, I’m going to talk about akathisia but I’m also going to talk about where we are, I think, as a culture, especially right now where anxiety and depression are way up. You know, drug sales are up, but we’re scared and we’re anxious. And the whole idea of when you are scared, when you are anxious, there’s a pill. You know, you turn on the TV, there it is – “you don’t have to feel this way.” And I do wonder, I wonder in my son’s case, what exactly were we medicating? He was diagnosed with an adjustment disorder and I have to ask, adjustment to what? You know? To what? What are we trying to get him to adjust to?
I think we’re pathologizing life as a culture and, you know, along with telling his particular story in the play, I also want to look at what we’re doing as a culture.