Hold On: My Diagnosis, My Self
This is Death, Sex, & Money from WNYC. I’m Anna Sale. This week we’re continuing our Hold On series – for the month of May, I’ve been hosting live national call-in shows with WNYC about the state of our mental health. It’s been so energizing for us to hear from listeners in real time, to have people call-in from their parked cars, their kitchens, in their living rooms on the street… to have live conversations without editing…and see who happens to reach out and call in.
For this episode, we focused on the impact of getting a diagnosis for a mental health condition…when it’s helped and when it hurts. University of Michigan psychology professor Craig Rodriguez-Seiijas joined me in answering calls…He’s studied bias in mental health diagnoses, particularly how LGBTQ+ people are more likely to be diagnosed with borderline personality disorder…a broad diagnosis that can describe a constellation of behaviors including impulsiveness, persistent feelings of emptiness or a pattern of unstable relationships.
On Saturday, we’ll drop an episode in your feed with your calls about prescription medication and your mental health…
And if you want to join our next live call-in show, it’s on May 18th at 8pm EST. You can stream it at WNYC.org…and see more about this series, including resources at wnyc.org/holdon. You can also share that link with anyone in your life who you think might benefit from hearing other people share about their mental health.
ok here’s the show…
Anna Sale: This is Hold On. A live national calling special about our mental health from WNYC and Death, Sex, and Money. I'm Anna Sale. All this month of May, which is Mental Health Awareness Month. We are talking with you about mental health on public radio stations across the country and on the podcast I host Death, Sex, and Money. This hour we are taking your calls about your stories about mental health diagnoses. What were the effects of having a name for a set of behaviors and symptoms? In what ways did that help? Did different diagnoses over the years change how you understood the origins of something about you? Whether it was something inherent in your brain or the results of something that had happened to you, did a diagnosis lead you to treatment that's been helpful? Did it make you feel more stuck with a condition? Tell us your stories this hour.
Of course, before you can get a diagnosis, you have to have access to mental healthcare, and that can be difficult. Maybe because of the restrictions of your insurance or there aren't enough providers where you live. We have desperate needs in our mental healthcare system.
In the White House Proclamation for Mental Health Awareness Month issued two weeks ago. Biden acknowledged the myriad of mental health challenges we are facing in the United States. There are record overdose deaths. Two and five adults reporting anxiety and depression, two and five teens experiencing persistent sadness or hopelessness, suicide as the second leading cause of death among young people. It does not have to be this way, the White House proclamation said.
So we're actually beginning this hour with what is happening to try to improve mental health outcomes in our country, and here to talk about that policy landscape is an Aneri Pattani senior correspondent for Kaiser Health News, where she covers mental health in the mental healthcare system.
Welcome Aneri. Thanks so much for being here with us.
Aneri Pattani: Thanks for having me.
Anna Sale: I want to start to ask you about the bipartisan gun safety legislation that passed Congress last year. Your outlet, Kaiser Health News, quoted a psychiatry professor at Duke calling it a gun safety bill, wrapped in a mental health bill. Um, what was included in that big legislation and is it something where we can begin to see the policy effects now, or are they still to come?
Aneri Pattani: I think that quote that you picked out is really apt. Sort of, it was gun control, but there's so many mental health policies tucked into that bill. So there was $1 billion for funding that would go to programs to boost, um, mental health counselors in schools. There was over a hundred million dollars in there to train pediatricians and primary care doctors to better recognize and treat mental healthcare, either in person or via telehealth for kids. There was like almost 10 billion dollars to try to increase the number of community behavioral health clinics, which are places that treat people for mental illness and addiction, regardless of their ability to pay.
Anna Sale: Mm-hmm.
Aneri Pattani: In terms of whether we're seeing the impacts of those, I think it's just too soon to tell, you know that legislation just passed.
Sometimes it allocates funding, but the funding won't start until 2024 actually. So the programs are just beginning or will begin next year, and once they get into place, it takes time to implement them, then to evaluate them. So I think right now there's a lot of hope that this influx of cash will make a difference in terms of access to mental healthcare, but it's just too soon for us to know.
Anna Sale: And do people who are mental health advocates, do they feel like this was game changing legislation? Do they expect this to be transformational?
Aneri Pattani: I think I'm hearing a lot of hope from people, a lot of excitement that not just this legislation, but I think Covid overall has focused a lot of attention on mental health because like some of the stats you just read off, you know, things have gotten worse. But also I think when people were home, they saw the mental health impacts on their lives more concretely.
And it focused attention on this issue. You have the gun legislation, but there was also covid dollars that states used to improve mental healthcare or telehealth. There was, um, the implementation of 988, which is the country's new number for what was already the existing National Suicide Prevention hotline, and that came with federal funding.
So I think there are a number of initiatives that advocates feel excited about that have brought attention and money to the mental healthcare system. But I think a lot of people are still cautious because this has been, for many decades, there's been these issues of access and there have been different policies, legislation that have been tried over that time and it hasn't quite solved the problem.
Anna Sale: And the Biden administration is also talking about insurance coverage for mental health care services. What is possible to change there to make it easier to access care when you have health insurance for your mental health?
Aneri Pattani: So, to what I was just saying about, you know, things have been tried over the years. This has been sort of the white whale in mental healthcare where, how do we get insurance to cover mental healthcare the same way they do physical healthcare? And there have been, you know, laws around mental health parity, it's called to get insurers to cover both similarly. Those have been in place for more than a decade at this point, but it's often hard to enforce them because it's difficult to measure how an insurance company covers a surgery is that equivalent to how they cover therapy sessions? Sometimes it's just very difficult to compare. And so that enforcement piece is lacking, and I think the Biden administration is talking about stepping up enforcement. Advocates I've spoken with for years have been, you know, wanting stricter enforcement. And what that means is when an insurance company doesn't cover mental healthcare the way it does physical health, they want to see fines. I think we have seen some fines, United Healthcare was fined a few years ago, but some advocates will say these insurance companies make profits in millions, billions, and the fines are just not enough to get them to change their policies.
Anna Sale: I mentioned overdose deaths at the beginning of this hour, and I know you've covered closely what states are doing with the settlement money they are getting with their settlements from opioid manufacturers. How much of that is being directed at the state level to improvements in the mental healthcare system?
Aneri Pattani: It's difficult to know. Honestly, there's no great mechanism in place to track where this opioid settlement money goes. However, that being said, I think there are many states and local governments, counties and cities that get some of the settlement money as well. So there are many governments that are thinking, we want to put this money towards mental health access to solve the root causes of mental illness and addiction and revamp this system.
I think one example is Rhode Island. In 2022 when they released their initial plan for the settlement funds. The largest, single bucket was 4 million to go towards community and mental health community and school based mental health programs.
Anna Sale: Mm-hmm.
Aneri Pattani: So there are places that are doing that, but we don't really know across the board how much of the money they're using and they're not required to use it for that purpose.
Anna Sale: And when you look nationally at what states are doing to try to figure out how to deal with people with severe mental illness in a new way, or with compounding crises in their life in a new way, um, are there any interesting experiments happening at the state level that are worthy of sort of looking at and following to see if they're gonna deliver care in a new way?
Aneri Pattani: Absolutely. I think there are two and these are not exactly specific to mental healthcare, but they're looking at the way we approach healthcare in general a little differently and advocates hope will have a big impact on mental health. So these are things happening in California and North Carolina.
So in North Carolina it's called the Healthy Opportunities Pilot. In California, they call it CalAIM, but there are similar programs that both states started in 2022, so just last year, where they're aiming to use Medicaid dollars, which is the public health insurance program for people with low income.
And they're trying to use those dollars to pay for things that are not traditional healthcare. So instead of using that insurance to pay for a drug prescription or a procedure, maybe use those dollars to pay someone's security deposit so they can have stable housing or deliver boxes of healthy food to their doorstep, or get them a case manager if the family's experiencing domestic violence or something like that.
And the idea is sort of if we use the healthcare dollars to pay for non-medical services, but that improves people's lives, do we improve their health and maybe decrease the cost of healthcare over time.
Anna Sale: That's interesting and it's interesting to me that it's California, blue state, North Carolina leans more red. It's interesting that those are the two states. Did they sort of independently develop this idea or did one of them steal it from the other?
Aneri Pattani: I'm not quite sure about that.
Anna Sale: (chuckles)
Aneri Pattani: But I think the fact that the states are different but taking this approach kind of goes to show there is a lot of research over the years that's been talking about, you know, we can't just intervene at the point when someone is in mental health crisis or once they've had a diagnosis.
When we're doing that, sometimes what happens is you send someone to therapy or you give them medication, but then they go back home and maybe they don't have a place to live or maybe they don't have food to eat. And so there's a limitation to what we can solve with just the medical interventions.
And I think more states are starting to realize we need to try to get in at the earlier level, at the ground level. If we create more stable lives for people, maybe we avoid some of those costly and more difficult to solve problems down the line.
Anna Sale: Well, it's interesting to me Aneri because one of the things we've heard about so far in this call-in series is how people enter the mental healthcare system, often when there's some other kind of crisis in their life, the threat of losing their housing or feeling really stressed because they're not able to earn enough money to take care of their family in the way that they had hoped.
And how to figure out how to address the anxiety and the mental health distress that comes about because of those material conditions, um, is quite interesting. And to me it suggests an encouraging way of looking at how often when we talk about mental health, I think often it can feel like we are saying, if you are experiencing distress, it's because you need to change the way you're taking care of yourself by going to your own doctor instead of looking at things as a structural issue or as something that is the result of very large forces that are not under your own control.
Aneri Pattani: Absolutely. I think there's a balance of both, right? There are certainly folks who will say there's a biological aspect to mental health and we have to be acknowledging that. And there's some parts that, you know, certain individuals are at greater risk. But when you look at the numbers in our society, before Covid but especially since, with how many people are experiencing anxiety, depression, thoughts of suicide in young people and youth especially, then we need to be thinking about some actions we can take at a societal level, not just putting it on each individual.
Anna Sale: Aneri Pattani covers mental health for Kaiser Health News. I want to thank you so much for joining us to start off this hour to help us understand where we are in the policy landscape, because this is something we're all trying to figure out how to navigate one-on-one so it's nice to hear this bigger picture from you.
Thank you for your time.
Aneri Pattani: Thanks for having me.
Anna Sale: After the break, we're gonna take your calls about your experiences with mental health diagnoses. We want to hear when it was helpful to have a label for something you were experiencing when it gave you a sense of understanding about yourself that you didn't have before. When did it not feel like it was all that helpful and you felt stuck in a way that you hadn't before you had that new label for how your mental health worked?
I'm Anna Sale. This is Hold On, a live national call-in series about our mental health. And again, after the break, we're sharing our stories about mental health diagnoses and when they've helped and when they haven't helped so much.
Anna Sale: This is Hold On, a live national call-in series about our mental health from WNYC and Death, Sex, and Money. I'm Anna Sale. The podcast I host is called Death, Sex and Money, which we often abbreviate as DSM. That's also the abbreviation of the Diagnostic and Statistical Manual of Mental Disorders, the big diagnostic manual used to identify and treat disorders in the United States. It's been considered a principle guide since its first edition in 1952. We are now on the seventh edition. The last one came out last year and in it there were lots of changes. It relaxed ADHD criteria and added symptoms to look for in PTSD and also authors took into consideration for the first time how racial discrimination might contribute to a given disorder.
When it comes to diagnostic process and practice though, evidence shows that what you look like and how you present can factor into how you are labeled. Black children and adolescents, for example, are more likely to be diagnosed with a disorder involving hostility or aggression than their white peers despite showing the same behavior. So we’re taking your calls this hour to talk about your stories about mental health diagnoses. What were the effects of having a name for a set of behaviors and symptoms, and what ways did that help? And in what ways did you question it or feel confused by it?
And joining me to take your calls is Dr. Craig Rodriguez-Seijas, he’s a psychology professor at the University of Michigan. He's trained in assessment and diagnosis, and he's a researcher. His latest paper is all about how LGBTQ people are more likely to be diagnosed with a personality disorder and how we should think about that.
Welcome, Dr. Craig. Thanks for being with us.
Dr. Craig Rodriguez-Seijas: Hi Anna. Thanks for having me.
Anna Sale: I understand you rushed to the radio just after volleyball practice. Is that right?
Dr. Craig Rodriguez-Seijas: That is correct. It's a queer men's just recreational league, and this is our first game of the season that is nice. We've finally gotten some good weather here in Michigan, so left a little bit early and came straight across here.
Anna Sale: Wonderful. We endorse taking care of your mental health in all sorts of ways on Hold On, this series.
And when you have been with a client and when you are first beginning to discuss a diagnosis after observing presenting symptoms…
Dr. Craig Rodriguez-Seijas: Mm-hmm.
Anna Sale: And maybe for insurance reasons, you're starting to talk about what their constellation of symptoms might look like.
Dr. Craig Rodriguez-Seijas: Mm-hmm.
Anna Sale: How do you start that conversation about saying, I think this might be the diagnosis of what you're experiencing.
Dr. Craig Rodriguez-Seijas: So I suppose it somewhat depends on the purpose. So a lot of my work was doing these assessments before people started the more intensive kind of a, like a partial hospitalization type of program. And to a degree, it's giving a name, it's a language that helps other clinicians understand a little bit about the case, to a degree.
Anna Sale: Hmm.
Dr. Craig Rodriguez-Seijas: When I'm working with clients one-on-one though, you know, most of the clients I work with are LGBTQ+ folks. So the training I've had has been thinking about how social and structural processes that LGBTQ+ folks tend to face because of just the societal factors that stigma that we face might be related to the eventual diagnosis.
So I usually try to couch, personally, try to couch the diagnosis in, well, some of these things are somewhat understandable. Doesn't mean that they're helpful, it doesn't mean that they're not causing distress, but they could be understandable. If you think about the context and the type, the ways that stigma insidiously compromises mental health for LGBTQ+ people specifically, but other folks who come from backgrounds that are marginalized or minoritized, you can think through these social processes in a similar way.
Anna Sale: And what does your research show about who gets diagnosed with personality disorders?
Dr. Craig Rodriguez-Seijas: So this is still building, I suppose, but it's seeming to suggest that LGBTQ+ people may be more likely to be given a borderline personality disorder diagnosis. And initially when I was looking into this, I was thinking of the word bias. And over time, and this is still developing, my understanding of biases changed quite a bit, you know, and it changes every day.
So at this point in time, it makes sense that there are certain processes that LGBTQ+ folks face that might make them more inclined to just endorse the criteria of borderline personality disorder. So an example, for instance, is one of the criteria is about unstable interpersonal relationships. And you can think about LGBTQ+ folks kind of exist or develop in this proverbial closet, and develop in this way of always having to be on the lookout for rejection. In its simplest forms of just people don't like you, to the most extreme that you could lose your life because of rejection based on your sexual orientation or gender identity.
So it's not surprising then that LGBTQ plus folks might be more likely to experience interpersonal difficulties or interpersonal relationship difficulties. We could talk about difficulties with being assertive and how that impacts functioning and that's just one criterion, but I would argue there are several of the criteria that would be more likely given the context. So they might be more likely to meet that criteria for BPD, borderline personality disorder.
There's another piece that seems like, and we're still kind of trying to investigate this with my own students in my lab, providers or mental health clinicians might be just more inclined to give the diagnosis. And there are historical pieces, especially for trans and gender diverse folks, where historically in the psychiatric literature, they've kind of equated having a trans or gender queer identity with Borderline PD.
So I don’t know if that's to blame. It's still kind of developing, but those are the pieces that come to mind. And because most of my training has been in providing evidence-based care for LGBTQ+ folks, my thinking has always been what are the structures, what is the context, what's the environment, and how does that compromise health? Rather than thinking of it as something within the person, something that they had a flawed personality as opposed to this developed in a context that it makes sense this would develop and it's still not helpful and it's still distressing.
Anna Sale: And help me understand if I get the diagnosis, say I'm an LGBTQ+ person who gets a diagnosis of borderline personality disorder…
Dr. Craig Rodriguez-Seijas: Mm-hmm.
Anna Sale: What then? What does that change for me in my pathway forward of understanding the kinds of treatments that I ought to look into, the ways I ought to understand, the patterns of relationships I've had? What then for me, when I think about my future?
Dr. Craig Rodriguez-Seijas: So one of the most, I guess, efficacious treatments that was developed for BPD is dialectical behavior therapy, DBT. That being said, DBT has shown to be effective for many different disorders, like most of our interventions, they're pretty effective across the board. The place that I have some concern is the prevailing way we talk about and think about personality disorders and particularly borderline personality disorder, it's heavily stigmatized in medical literature and, uh, medical professionals, but also just in wider society. Um, the assumptions we make about folks is that something is flawed in their development of their personality. And I guess that has always been slightly different, but I would argue fundamentally different to how I was taught to think about mental health with LGBTQ+ folks.
In many cases, not always, but in many cases, these behaviors that are not helpful, developed as learned ways of dealing with stigma. And now the context that you live in might be different so they might not be adaptive anymore. And my job then as a therapist is to think through, okay, how do we figure out when it’s adaptive, when it's not, how do we create some more flexibility? So maybe I don't need to apply these assumptions or these ways of thinking to every single situation so maybe I can go with a more nuanced way of looking at the world that helps me better meet my needs.
Anna Sale: Uh-huh. And in the most simple way, you described dialectical behavioral therapy – what does that mean when I go into a room with that kind of therapist?
Dr. Craig Rodriguez-Seijas: Sure. DBT isn't my typical, but it is a form of cognitive behavior therapy, which is mainly what my training has been in. But a lot of DBT involves this holding, this dialectic, like holding two things at the same time.
So yes, things are distressing – I'm doing my best and I need some changes. So it's kind of acknowledging things can happen and I find that very helpful with the folks that I work with because the pieces acknowledging absolutely some of these behaviors might have been adaptive given the context, given you had to, you know, learn to hide maybe what you were feeling or what you expressed or your needs because there was danger, and right now that's not serving you in the same way when you're trying to interact with your boss and your job or your romantic partner and getting your needs met.
Anna Sale: Hmm.
Dr. Craig Rodriguez-Seijas: So it's kind of holding those, those two, I guess two sides of the same coin.
Anna Sale: I hear you describing, validating what's brought someone to where they are in that moment, and also the possibility for saying there could be an opportunity for responding in a different way and holding those two at once.
Dr. Craig Rodriguez-Seijas: Yes.
Anna Sale: I want to bring Kimberly in Melrose Park, Illinois into this conversation.
Kimberly, what's been your experience with a mental health diagnosis?
Kimberly: Hi, good evening. Thank you for taking my call. Um, for me it's, uh, I had struggled with anxiety and depression at an early age. And was on medication and seeing a therapist and psychiatrist. Um, and then about six years ago I had, uh, gastric sleeve surgery and lost 180 pounds.
And then within two years after that I just started to kind of change a little bit and I was just kind of not acting my normal self. I started kind of spending a lot of money and just doing things that I normally wouldn't have done. And my family basically turned their back on me thinking that I had started doing drugs and I ended up going inpatient, in a mental health facility and found out that my depression – through vitamin deficiencies and I ended up needing iron infusions – the depression had turned into bipolar, and so I needed a whole new different set of medications. And there was a lot of trial and error while I was in the hospital. Um, that was for four weeks that I was inpatient away from my children.
Anna Sale: Hmm.
Kimberly: Um, and then, you know, from the outside, everybody thinking that I was doing stuff that I wasn't, and it was just clearly an undiagnosed condition.
And then once the diagnosis was made and the medications were regulated, now being out of the hospital three years and doing well and, and you know, took a year to get back working and, and working full-time again and back to my normal self. That diagnosis was so critical because I don't know where I would've ended up to be very honest with you.
Anna Sale: Yeah, Kimberly, um, congratulations on all of that work you have done to take care of yourself, and I'm glad that you've had a good outcome.
Dr. Craig, what do you want to tell Kimberly about her experience going through the mental healthcare system and finding that, finding that diagnosis that really helped?
Dr. Craig Rodriguez-Seijas: Yeah, I'm really glad to hear that things have worked out for Kimberly. I'm really, really glad to hear that, finding that you have been able to access the mental health that's been useful for you. The thing that comes to mind for me is, these diagnoses are, they're fuzzy. The boundaries between them are quite fuzzy. And just psychiatry in general, it's a relatively young science still.
So when I think about what diagnoses, diagnosis is supposed to convey some information, but as you get more information, as we get more symptoms being met, the diagnosis might change. And it's a piece of it because we're trying to have a way to make sense of what a person is bringing to us.
And one piece of where diagnosis kind of came from is, you know, previously every hospital, you know, you can think quite a while back, would have its own idiosyncratic diagnostic system so communication across people is just a nightmare. But one thing Kimberly brings up is, you know, transitioning to a bipolar disorder diagnosis and you know, that would make sense if there are more symptoms coming in that then makes sense to realize, oh, this isn't unipolar depression as we might think of it. This is more a bipolar or would correspond with a bipolar disorder diagnosis. And then there are some different medications that might be helpful.
Medication isn't my specialty, but this is where having at least having access to a team, um, psychologists, psychiatrists, hopefully social workers as well to think about social support and other services one could access. So those are the things that come to mind about the challenge that we have when we're trying to get a diagnosis.
Anna Sale: Kendra in Pittsburgh, what's been your experience with a mental health diagnosis?
Kenda: Hi. So my experience, um, I was diagnosed with premenstrual dysphoric disorder or PMDD.
Anna Sale: Hmm.
Kendra: And it cycles based on the menstruation cycle and so there were periods of time where everything would feel normal, I would behave normally, and then for two weeks, you know, seven to 10 days, 14 days, I would just kind of shut down completely or become very irritable and just really unlike myself. And so I would cycle through that for months and each time think, okay, I'm just gonna do a little bit better this month and it would just come back again.
And so once I got that diagnosis, it was very relieving. It kind of explained why these behaviors were off and on. It really made sense and so it was very relieving for me to have that diagnosis and sort of an explanation for my friends and families who had seen me in those times, it gave them a little bit, like something that I could say, you know, that wasn't me.
I think with mental illness, it doesn't feel normal whenever we have those actions and sometimes it doesn't make sense. So knowing okay, I could at least attribute it to something was helpful. But then I did have later on an experience with – I kind of had to come to terms with having this disorder and I was taking medication for it – but then later on because of having this condition, it became a burden for disability insurance through, as a job, I'm in the medical health profession.
And because I had this diagnosis, a couple companies denied me coverage because of simply having it, other companies restricted…there's a medical or a mental illness clause or a qualification that you can fall under for disabilities. And they limited and removed that from my policy because I already had this diagnosis. And so it was at a time where I was excited about getting better, the medication was working, but then upon hearing that news, it just kind of put me back into that space and thinking, wow, this is something that these companies are making it seem like it's a bigger deal than what I feel like it is, or just having someone else define what that means for my future. Um, yeah.
Anna Sale: And Kendra, so I hear you saying that it gave you a way of explaining yourself to your loved ones. It helped you understand the patterns that were happening in your life in a new way, and then it also became something that was haunting you on paper in a bureaucratic way that you felt then limited by and that limited your agency.
Dr. Craig, is that a reality for a lot of people who get a mental health diagnosis, that it both can be an emotional lift for them and then also to navigate in the healthcare system in about 30 seconds?
Dr. Craig Rodriguez-Seijas: Oh yeah. I think that that's part of the challenge. There are many folks when you like, you know, give them a pamphlet about the diagnosis and they come back saying, this is me. This explains it. This is so helpful that there is a name, because the entire time, there's the internalization that there's something wrong with me. So sometimes it's really helpful to have a name that it's not me. I have this thing.
At the same time, and this comes up with LGBTQ+ folks thinking about, well, if a group is more likely to be given a diagnosis, the diagnosis carries a stigma, which Kendra was talking a little bit about, and then the stigma, the way we talk about the diagnosis, the way the stigma plays out is because it's assumed to be something wrong with your personality. Rather than understanding how this might happen in the context, then we're just adding more and more stigma to already marginalized group.
Anna: Jacob, what's been your experience getting a mental health diagnosis?
Jacob: Hi. Thank you so much for taking my call.
Anna Sale: Sure.
Jacob: I just wanted to bring up my situation. Basically I’ve been diagnosed with depression and anxiety for probably 10 years now. And I also suffered from alcoholism for about five years. And then about three years ago, I finally got sober and I'm really confused now about whether I'm still suffering from depression and anxiety, or if it was just the substance use disorder that was causing everything because my life is infinitely better now. Good job, own a home, lots of friends, everything is good. But I still have those moments of depression and I'm on Zoloft for it and I'm just not really sure about my diagnosis anymore. And when I talk to my psychologist, um, or psychiatrist about it, you know, I kind of get pushback about going off like, well, if things are going so well, why would you want to change anything? And I'm really not confident in this diagnosis anymore and not really sure where to go.
Anna Sale: Yeah. And I hear you. You have a confusion about not only the kind of medication you ought to be on, but also how you should understand yourself as it sounds like as so much in your life has changed. Congratulations on your sobriety.
Dr. Craig, what would you say to Jacob?
Dr. Craig Rodriguez-Seijas: So the thing that comes to mind is maybe a little bit of research evidence. You know, we often think of these as kind of really separable diagnoses. So like alcohol problems versus depression versus anxiety but the reality is most people who have one disorder diagnosis are gonna have a second.
Most people with a second or about half with a second are gonna get a third, and so on and so on. So again, they're really fuzzy. And sometimes separating them is really difficult because, you know, does the diagnosis relate to the drinking? Is it the other way around? And even when folks decide to terminate, um, psychotherapy or any kind of mental health treatment or even seeing the psychiatrist, there's nothing wrong with coming back later on.
Sometimes people get in crises later on in their life and it's knowing that I can reaccess this when I need it and there's nothing wrong with it. It doesn't mean you failed. This is actually more the norm. It means that now you have the tools to know, oh, I need external help right now and that's okay. But it's also knowing the tools that maybe I don't need the help right now and I could start tapering off. But that's definitely a decision and a discussion for you and your mental healthcare provider some more, and perhaps even being assertive. It's okay to be assertive and say, you know what? I really think I would like to try tapering off. And then having that discussion about what their thoughts are, what are the caveats, what are maybe some issues you think could come up? How do I plan for when things get challenging in the future?
Anna Sale: Yeah. Jacob, thanks so much for your call, because I think that is something a lot of people relate to as their lives change and look different from when they first got a diagnosis or started a particular treatment plan.
I want to bring in Kevin in Washington D.C.
Kevin, what's been your experience with a mental health diagnosis?
Kevin: Well, for me, my diagnosis was dissociative identity disorder, uh, multiple personalities. And I had experienced, uh, quite a life of frustration. And I lived through the kind of episodes as a child that create dissociative identity disorder.
I lost the memories. I joined the Air Force one day, and in the course of flying to Texas, I totally forgot I had the associate of Amnesia. And from the ages of 18 to 55, I had no memory of what went on.
Anna Sale: Hmm.
Kevin: At 55, the memories started to come back and I was devastated. I had no idea what was going on. I was able to, through my good wife's work, secure a therapist who is a pioneer in incest and dissociative identity disorder and the day that she told me what was going on with me, I came out of the doctor's office to meet my wife and I was sobbing and crying and crying, and I kept shouting over and over again, She knows me, she knows me, she knows me.
And it was the first time in my life that I had ever spoken with somebody who understood, understood what, uh, devastation I had lived through and what the consequences were.
And that was the beginning of a long road of therapy that, with the diagnosis, I began to understand, really understand, it’s a deeply serious kind of an issue as we all have on this show tonight. But it was the breaking point, it was a changing point. Without that diagnosis, I simply would've ended up, I'm sure in a mental hospital someplace, I would've ended up divorced on the street and penniless. I was just coming apart.
Anna Sale: Yeah, Kevin, thank you for your call.
Kevin: You’re welcome.
Anna Sale: That, she knows me, she knows me – what a deep sense of relief, I could hear in your voice there. And also thank you to your wife for her work to help navigate your healthcare there.
Dr. Craig, anything you want to say to Kevin?
Dr. Craig Rodriguez-Seijas: I mean, the exclamation, she knows me, she knows me – what comes to mind is: it is tough coming to see a mental health provider. You know, I much prefer to be on the side of the chair of like, I'm the therapist. But being on the other side, it is tough because you're coming in to a complete stranger and the expectation is you're gonna unburden all these really intimate details that are scary at times.
Usually we're coming in, folks are coming in when they're not in their best places, when they're in crisis. And the expectation, at least from the provider, is that, well, you're gonna trust me. But I'm a complete stranger. And there is that piece of being known by somebody and being understood and feeling that validation and that normalization that somebody gets this. When many folks coming in are usually, oftentimes, feeling ostracized, feeling like it's just them feeling like they're on the outside of everything and there's something wrong.
And there's just that validation that could be powerful to realize that somebody gets it, somebody else gets this. And it's not just me alone in this. And I have somebody in my corner at least. Although luckily, Kevin also had his wife in his corner, which sounded like a really, really good social support as well.
Anna Sale: Yeah, and it also sounds like it wasn't just sharing the narrative of what you had gone through Kevin, but also then having a professional say, these ways that you have responded psychologically to the story you have is this name, this is the name of what you’ve notice, of what's happened with your memories.
Dr. Craig Rodriguez-Seijas: Yeah. It gives you something to grasp something, to put your hand on something that's not, the way I think of it: it's not you, it's this thing that you happen to meet criteria for maybe you are diagnosed with, but that gives an explanation. It gives a story that I can cling to when there's so much chaos and confusion. That's how I see it at least. I think it's usually very helpful in that sense.
Anna Sale: Kevin, thank you for sharing.
Pierre in Jersey City. I understand you have a question about a mental health diagnosis?
Pierre: Yeah, so I just wanted to say that I have OCD. It's pretty severe and a lot of people in my family, like a huge amount of people in my family, have very different diagnoses. But all extremely severe and all extremely life threatening and stuff like that. And I just noticed that we all kind of deal with some central issues that are not covered by the healthcare system or really brought up by our providers in general, our mental health providers.
I mean, I really, I'm very grateful to them. They've saved our lives. The medications have really helped us a lot in temporary ways. But for example, we've never been prescribed, there's no like, out-of-box solutions like. You know, like prescribing a gym membership that's covered by insurance where they kind of make sure that you comply by coming in.
Or something like groceries and cooking classes that might help us feed ourselves better instead of with junk food and substances. And also you know, sleep disorders are really common. So I guess what I'm trying to say is we all have very different diagnoses in my family, but I feel like they're very narrowing and they kind of lead to certain medications, but we all struggle with the same things that are really central and kind of haunt us for decades and decades.
Anna Sale: Hmm.
Pierre: And I just wish there was more room in the medical system and in the mental health system for addressing the more basic things that I think, you know, there's some research that says that it's just as effective as medication, as therapy, and sometimes more effective. And I just feel sad that you know, so many people in my family don't get that support and have, like, just awful suffering as a result. And in really concrete medical ways too, you know.
Anna Sale: And Pierre, what I hear you saying is that it's both affected the kinds of treatment that different members of your family and yourself have taken on. And also that maybe, um, having these different diagnoses and the vocabulary that each of you have for yourselves, it's limited you in being able to have vocabulary for what is common among you because you have these different diagnoses. Is that what you're saying?
Pierre: Yeah, I mean, of course differentiating is very important, you know, because some people have very different issues and they need highly specific treatment for that. I guess what I'm saying is that I feel like there are more basic issues that we all suffer from in the mental health community and within my own little community and my family with all of our different diagnoses, like we all have severe sleep problems, eating problems, exercise problems, and like those, even just those three things without even going down a further list, like there's just so much research about how it helps all of our diagnoses, you know what I mean?
And I just don't understand why the doctors don't bring it up and they just kind of send us home with medications or very specific treatments instead of going back to the basics like diet and exercise is kind of like a passing thing that you say in the first 30 seconds and it just never, there's no budget for it. We're just supposed to take care of it all by ourselves.
Anna Sale: I understand what you're saying. Pierre, thank you so much for your call.
And Dr. Craig, what would you say to Pierre about what he's saying and identifying about how a diagnosis sets you down a particular treatment path that can be very specific, that doesn’t include other things.
Dr. Craig Rodriguez-Seijas: I would say what comes to mind is the limitations of some diagnosis. You know, when I'm working with a client, I'm not treating the diagnosis. The diagnosis is helpful to a degree, to be honest, personally, it is sometimes helpful, sometimes not so much. I'm really thinking about what are the symptoms, and getting a really strong case conceptualization.
So what are the maintaining factors? Pierre mentioned sleep. That is what I was trained as one of the first things you think about regardless of diagnosis, how is sleep? Because sleep is fundamental for folks, and we have interventions for sleep.
So what comes to mind to me – and it depends on one's training as well. How are you trained to think through the conceptualization? There's also the piece that, the diagnoses are really heterogeneous, meaning two folks with the same diagnosis don't really look the same. And the illustration I always bring up is, oh, and people have brought up, I should say, is borderline personality disorder. There are nine criteria. You need five to get the diagnosis. That means two people can have the same diagnosis and overlap in one criterion. And there are actually 256 constellations of borderline personality disorder that are possible. So this is a limitation of a diagnosis. It doesn't explain everything. It gives you like a little bit of information, but there's a lot more that needs to be personalized and thinking about what is the context this person is existing in, how do I use that to think about the treatment that would be helpful for them.
Anna Sale: I want to bring in Kate in Minneapolis. You have a story about a diagnosis not being helpful in your family. What happened in your family?
Kate: Well, I want to be clear that of course, I believe in mental health and diagnoses, so I think that's important. What happens sometimes is that in my particular case, I have a 15 year old kiddo who's been in one form of crisis for the last several years. And, at one point somebody told us, well, they're a little young at 12, but we think they have borderline personality disorder.
Somebody else met them for what we thought was maybe obsessive compulsive disorder and recommended, oh, they need to go into a residential treatment program right away. Um, we were given several diagnoses of anxiety and depression, all of which we then followed the prescribed treatments for. And it made things worse and worse and worse, and not until going through several providers we got to the, um, with luck, and a little research somebody suggested, you know, your daughter might have autism.
Anna Sale: Wow.
Kate: Your daughter might be autistic. And, a very particular kind of autistic called pathological demand avoidance, and suddenly lots of things have clicked. That being said, they are still within the throes of what they call autistic burnout and won't see a provider because of the trauma, most likely unintended by well-intentioned experts, including their parents, who let them down.
Anna Sale: Yeah, Kate, thank you for sharing your story because it can be a long road to get a diagnosis.
And Dr. Craig, this is the story for many people, many families. And quickly, what would you just say to someone who feels like they have a diagnosis they haven't found, doesn't feel like it clicks? Um, what's the next step?
Dr. Craig Rodriguez-Seijas: Yeah, that is the challenge. I think in terms of, at least for psychotherapy, there is a piece of shopping around to find the psychotherapist that works, the therapist that actually kind of jives with you.
In terms of diagnosis, this is the challenge that sometimes diagnoses, especially like borderline PD that sticks, when that gets put on a file, on somebody's chart, it often just takes a long time to get off. And this is where I feel very cautious about assigning diagnosis, especially ones that carry so much stigma.
Anna Sale: Yeah.
Dr. Craig Rodriguez-Seijas: There’s also a piece of expertise, like I don't have expertise in autism spectrum disorders specifically, so I wouldn't be able to assess things like that personally. So there's the piece about what's somebody's expertise and are they kind of operating in their lane, I suppose.
Anna Sale: Dr. Craig, thank you so much for joining us during this hour.
This is, Hold On. It's a live national call-in series about our mental health. We've had previous episodes about adolescent mental health and also about the long road it can take to find the right kind of provider that you click with. And as we heard this hour, to find the diagnosis that's helpful for you and your family. Thank you to everyone who called.
Dr. Craig Rodriguez-Seijas, assistant professor of Psychology in the clinical science area at the University of Michigan. Thank you so much for being with us.
Dr. Craig Rodriguez-Seijas: Thank you for having me.
Anna Sale: I saw on social media you have aspirations for a Frasier Crane-like radio show someday, and I'd like to say you're well on your way.
Dr. Craig Rodriguez-Seijas: Getting closer and closer.
Anna Sale: This is Hold On, a live national call in series about our mental health. We will be back next Thursday for our final two hour call in talking about mental health at work, pushing through stigma for populations less likely to ask for mental health support, and also where your mental health has gotten taken care of outside of the healthcare system.
Thank you for listening and thank you for joining in our conversation. I'm Anna Sale, and this is Hold On from WNYC and Death, Sex and Money.
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