Dear Newly Diagnosed: What We Wish We Knew
In today’s show, Gabe discusses what he could have done differently as a newly diagnosed bipolar patient that may have made his life a little easier. He and Lisa also discuss some common pitfalls a new patient may run into.
For example, what’s the problem when patients are told they need to be med-compliant at all costs? Should you be open at work about your illness? Join us to hear Gabe’s experiences and learn from his rookie mistakes (which actually ended up working out in the end anyway).
(Transcript Available Below)
Please Subscribe to Our Show:
And We Love Written Reviews!
About The Not Crazy podcast Hosts
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies are also available directly from Gabe Howard. To learn more, please visit his website, gabehoward.com.
Lisa is the producer of the Psych Central podcast, Not Crazy. She is the recipient of The National Alliance on Mental Illness’s “Above and Beyond” award, has worked extensively with the Ohio Peer Supporter Certification program, and is a workplace suicide prevention trainer. Lisa has battled depression her entire life and has worked alongside Gabe in mental health advocacy for over a decade. She lives in Columbus, Ohio, with her husband; enjoys international travel; and orders 12 pairs of shoes online, picks the best one, and sends the other 11 back.
Computer Generated Transcript for “Newly Diagnosed” Episode
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Lisa: You’re listening to Not Crazy, a Psych Central podcast hosted by my ex-husband, who has bipolar disorder. Together, we created the mental health podcast for people who hate mental health podcasts.
Gabe: Hey, all, my name is Gabe Howard and I am the host of the Not Crazy podcast, which you are listening to right now. And as always, I am here with Lisa Kiner.
Lisa: Thank you, Gabe, and today’s quote, the two most powerful warriors are patience and time, and that is from War and Peace by Leo Tolstoy.
Gabe: What happened to the pregnant quote? I kind of dug that one better.
Lisa: Really? That was just for you, I didn’t mean that one for the show.
Gabe: Well, what was it? I really do think that it illustrated an excellent point.
Lisa: Ok, so Warren Buffett said no matter how great the talent or efforts, some things just take time. You can’t produce a baby in one month by getting nine women pregnant.
Gabe: I like that one because I do think that it is a good analogy, and I, I get it, Leo Tolstoy versus Warren Buffett. I’d like to point out that they’re both old white men, so.
Lisa: But it’s a slightly different feel, one you’ve got patience and time, not just time, and also it’s about the warring aspect of it and this is your strongest tool in the fight.
Gabe: I think the point, though, is, is no matter how hard you try, how efficient you are, how much you want it, how hard you work, baby takes nine months.
Lisa: No amount of extra effort gets it to be less than nine months.
Gabe: Right, and in terms of mental illness recovery, no matter how hard you want it or how hard your family and friends want it for you, it takes as long as it takes. And I think this is often missed when people are diagnosed with severe and persistent mental illness. Which leads us to our show topic.
Lisa: Yes, the topic today being things I wish I had known when I was diagnosed, the chief among them being just the sheer amount of time everything would take.
Gabe: Wasn’t that like a shocker to you?
Lisa: Yes, very much so.
Gabe: It was a huge shock to me. I sincerely believed that I was going to leave the psychiatric hospital one hundred percent in recovery and perfectly well, I had no idea it was going to take four years.
Lisa: Well, certainly, I didn’t think it was going to take four years, but really, you honestly thought it was going to take zero?
Gabe: Of course.
Lisa: Like the next day would be done?
Gabe: Well, yeah. Consider this, every other time I had ever had a medical problem, I went to the doctor, they diagnosed me, they gave me the treatment, and within a few weeks, I was fine.
Lisa: But that just goes to show how good your health had been up until that point.
Gabe: Yeah, you asked me things that I wish I knew when I was diagnosed, that’s one of the major things that I wished I knew when I was diagnosed. And I got to tell you, the average age of diagnosis of a severe and persistent mental illness is 16 to 24. For the average group of people to have excellent physical health are people who are the ages of 16 to 24. That’s why they’re all the athletes, Lisa. It’s no surprise that all the athletes are young. It’s not
Lisa: Well, but I’m just
Gabe: A bunch of old people
Lisa: I’m just, I’m trying,
Gabe: Except now Mike is fighting and he’s like really old.
Lisa: I’m trying to show
Gabe: You know what I mean?
Gabe: Like like like old people
Lisa: You are such an ass
Gabe: Are getting out there more, but still the best are the young people.
Lisa: What I’m trying to say is that this isn’t unique to mental illness. This is true with all illnesses because we all watch too many medical dramas on TV. We all just expect that as soon as someone leaves the hospital, it’s over, it’s done. They don’t need long term care. Their problems are completely resolved. I had surgery yesterday, but today I’m ready to go back to normal life. In real life, healing just takes a really long time and that is not represented in media.
Gabe: You’re right, young people, we believe that we’re invincible. I thought I was invincible. I thought that any problem that befell me could be resolved with, you know, drops or pills or, you know, an outpatient stay.
Lisa: Well, because you only had acute problems, you never had a chronic problem, that was one going to take long term management or even that just takes a long time.
Lisa: The kind of things that you’re
Lisa: Talking about are things like a sprain or needing stitches
Lisa: Or something like that.
Gabe: Yeah, that was my only understanding of medicine, but let’s move that back for just a little slight, tiny moment, even though that was my experience, you recognize that if I would have gone to the hospital for three days and had been diagnosed with breaking both of my legs, I would have recognized that that was long term. So when you say, well, everybody thinks this. Yeah, everybody thinks this about things that they understand. I didn’t understand mental illness. I didn’t understand it was going to take this long. Nobody taught me anything about it. Or perhaps, just perhaps, I would have been diagnosed before the age of 25, considering I had symptoms of this insidious disease at 15.
Lisa: Well, and as we all heard of the last episode, though, it wouldn’t have been appropriate to diagnose you at 15.
Gabe: It would have been at 20.
Lisa: Yeah, it would have been. Yeah, you were definitely symptomatic by then. Yeah. Like I said, I didn’t recognize my own mental illness until I was in my 20s. And that was a long, long time of symptoms.
Gabe: I like the point that you’re making, Lisa, where you say, look, one of the reasons that that we have such a hard time understanding and managing mental illness is because we’re young and we just we just don’t understand the process of our bodies and minds failing us. But I don’t like what you’re implying that, yeah, we’re stupid about everything and mental illness is just exactly the same. I do think there’s another level.
Lisa: I do think there’s another level.
Gabe: I did, in fact, have symptoms that nobody recognized. I do believe that my family would have recognized symptoms of other illnesses. The example that I always use is my mother took me to a dermatologist from the time that I was very young because she understood that her red head, translucent son burnt easy and had a lot of skin problems. Well, how did she learn that? My mom was not a doctor. Enough people came up and told her and said, hey, your son is a redhead and very fair skinned. You’re going to want to put a lot of sunblock on him and get him a dermatologist, like on call. Why did nobody teach them this about mental health just as a precautionary measure?
Lisa: Well, but there’s got to be somewhere in the middle. The number one thing, when people tell me that they have a new diagnosis or a friend or family member has a new diagnosis, that I want to impress upon them is the amount of time this is going to take. And I had absolutely no concept of that. And I think things would have been a lot better, a lot different if I had, although I’m not sure I would have listened. If one of your doctors had sat us down and said, look, this is going to take four years. I don’t think we would have believed it. We would have thought that, oh, no, that’s ridiculous. We can knock this out in six months, tops.
Gabe: Yeah, I mean, it’s going to take nine months to have a baby, but that’s ridiculous, we can knock this out in three months, tops.
Lisa: All right, good point.
Gabe: The reason that we know how stupid that sounds is because we openly talk about pregnancy. We’ve met people who were pregnant. We’ve seen people who were pregnant. We’re willing to discuss and learn about pregnancy and not for nothing. I recognize that nothing in pop culture is displayed accurately, but pregnancy is displayed fairly accurately. Never once have I seen a show where they said, oh, I will only be pregnant for one month and I won’t gain any weight and I’ll have a baby. No, they always show the baby bump. They always imply that it’s been nine months. The baby ages fast. ou know, the woman has way too much energy in most cases. I
Lisa: Never gains any weight.
Gabe: No, no, she does gain weight, but it’s that perfect little baby bump.
Lisa: Yeah, her face is exactly the same.
Gabe: Face exactly the same, arms exactly the same, and of course, she’s still walking around in high heels like it’s not a problem, I recognize that it’s not a perfect analogy, but never once have I watched a show where they said, hey, this woman is pregnant on Monday. She’s going to work really, really hard and be really, really efficient and give birth on Friday because everybody’d turn it off and call that stupid. Just go back to my personal experience and the personal experience of a lot of people. They don’t realize how long it takes. And that leads me into my next thing that I genuinely and honestly wish that I knew on the day that I was diagnosed. I wish I knew that the term be med compliant was bullshit.
Lisa: Well, I don’t know that you can say that it’s bullshit, but I would say that I wish I had known that medication wasn’t the end of the story.
Gabe: The reason that be med compliant is bullshit is because it’s not complete. First off, being med compliant doesn’t do anything. For example, let’s say that all you had to be was med compliant. Well, then every psychiatrist should just prescribe every single mental health patient, M&M’s, and say, listen, wake up and eat a bag of M&M’s and go to bed and eat a bag of M&M’s. And as long as that person does that, they will in fact, be med compliant. But we all know that that’s not going to help them with their mental illness. That’s complete nonsense. I don’t understand why the term isn’t being med compliant on the correct medications. I feel that it’s be med compliant only because that puts all of the pressure and responsibility on the patient while giving none of the pressure or responsibility to the doctor. The minute you add be med compliant on the correct medication, well, now you’ve got a combo deal. Now the doctor has to be right and the patient has to be right. I think that it is this little insidious thing that puts all of the pressure on the patient, because after all, if it’s not working, it’s because you weren’t med compliant. It’s not because the medicines didn’t work or were wrong or you were prescribed incorrectly or diagnosed wrong. No, no, no, no, no. It’s you weren’t med compliant. That’s why I hate that so much. And that’s why I say it’s bullshit.
Lisa: That is a good point, I did not have a good understanding of how long it would take to find the right medication.
Gabe: I remember, Lisa, when I was first diagnosed, you did a really good job of saying to me, listen, people with bipolar disorder, they have this habit. You understood this very well because, well, you had done it. You had done it with depression. You told me that under no circumstances was I to stop taking my medication, that I must be 100 percent med compliant. I needed to be perfect, you said. And that as long as I took my medicines as prescribed, you would stick with me, you would help me. I am so thankful that you gave me this message because I do believe it was a good one. But I would like to point out that even though I was perfect on my medication, it took four years.
Lisa: Yeah, you were always perfect.
Gabe: And this was a big shock to my system, because all I could think was, is I’m doing what I’m told, I’m listening. This hurt me a lot because I started to believe things like, oh, I must have treatment resistant bipolar. I must have such a severe case that it can’t be cured. And you’re thinking, why did you believe that, Gabe? Well, I did everything the doctors told me to do. I did everything that Lisa told me to do. I was obeying all the rules and I wasn’t getting better. And since I did not have any understanding that it could possibly be the doctor or the treatments’ fault, that only left me, it must be my fault. I must be bad. I must be wrong. That’s a lot to deal with on top of, of course, managing a chronic illness.
Lisa: So what are you saying you wish you had known?
Gabe: I wish that I would have had a better understanding that this needs to be a relationship between me and my doctor and that we need to work together to find the right treatment for me. I did not understand that. I thought that this was 100 percent on Gabe and that any failure was only my fault.
Lisa: I do have to give you a lot of credit for that, you were in fact, 100 percent perfect. You were always compliant, unlike almost every other person diagnosed with bipolar disorder we’ve ever met. That’s just a common thing. Lots of people go on and off their meds. And you never did to the point where every once in a while, a doctor would doubt that you were actually taking it. They would say things like, well, are you sure you’re taking it? Well, but are you taking it every day? Are you taking all the pills? So it’s yeah, even doctors have this very condescending attitude sometimes about, well, it can’t possibly be the treatment. It must be you.
Gabe: I know we’re going to talk about stigma later in the show, but this is one of those like hidden forms of stigma, right? It’s like systemic stigma.
Gabe: I feel like there’s only two choices for people with mental illness. Either we are unwell and therefore failing, or we got our shit together.
Lisa: Right, there’s no in between.
Gabe: It’s always our fault. If the treatment works, oh, thank God for the treatment. Yeah, yeah, it worked. If the treatment fails, you must not be taking your meds. You’re not be going to therapy. You’re not using your coping skills. You don’t want it bad enough. You need to try harder. There’s not really a space for you beat it. You’re a survivor. You’re amazing. The two choices are you are sick or you got your shit together and you’re normal.
Lisa: Yes, there is. There’s totally a space for that cheerleading, you did it, it’s over, you did it. Yay! What there’s not space for is the in-between time of treatment. And cancer doesn’t have this problem with cancer being our favorite disease analogy. You either don’t have cancer and you’re fine or alternatively, you’ve recovered from cancer, you’re in remission, but you can also be undergoing treatment. You can be in treatment. You can be getting chemotherapy right now. You can be getting radiation right now. We don’t have that. Either you don’t have mental illness or you’re successfully treated. You’re in recovery. Well, what about that in-between time where OK, I’ve been diagnosed, but I haven’t really found what’s working for me yet so that I can be in recovery and have that life that I’m looking for. What about that period? There’s no in treatment, not all the way there yet, period.
Gabe: It just really seems like there’s only two levels for people with severe and persistent mental illness, either sick or well. And when we’re well, the credit is not given to us for being well.
Lisa: You’re right. I think we’re making two separate but intertwined points where you’re saying that there’s no victory at the end
Gabe: Exactly, that is what I am saying.
Lisa: And I’m saying there’s only the two steady states.
Gabe: There are only two options and you’re either well, in which case everybody gets the credit but you, it seems. You know, your mom worked so hard for you. The doctors got all the right medicines. Research is so great or you’re sick and then it’s your fault for not wanting to be better. It reminds me of all my photographer friends. If they take a bad picture, it’s because they suck as a photographer. But if they take a good picture, it’s because they have an amazing camera. Oh,
Gabe: You must have an amazing camera
Lisa: Yeah, and that’s why no one’s willing to pay the money that it takes for good photography.
Gabe: Exactly. I think that’s very difficult because I want my moment in the sun, I feel that this, just I thought I would get it. I sincerely believed
Lisa: You did?
Gabe: That if I. Yeah, I thought that if I worked hard that I would be praised for beating bipolar disorder, for achieving recovery, that people would be like, that is amazing. Wow. You know, most people his age don’t have to deal with that. And Gabe did it.
Gabe: But when I got there, everybody’s like, what? You’re finally behaving, buddy.
Lisa: This actually makes a lot more sense on some of your behavior during that time, leading us to another thing you wish you had known when you were diagnosed, the role that stigma was going to play.
Gabe: But you know what? I can’t count this as one of the things that I wish I knew because I did know because you told me. You told me a hundred percent about
Gabe: All of the stigma, the discrimination. And you pleaded with me to change my behavior. And I
Gabe: Thought you were wrong. So,
Gabe: Yeah, things I wish I knew now. This would go under the show, advice I wished I would have taken.
Lisa: So the thing that you wish you knew was that Lisa was right.
Gabe: Yeah, I just.
Lisa: Which maintains a lesson you could use today.
Gabe: You specifically described it about the stigma that I would experience at work, and you said to me, look, Gabe, if you tell people that you have bipolar disorder, that you have mental illness, they will treat you differently, they will behave erratically and it will hurt you and your career. I had known these people. I had worked at this place for, what, four years? I did not believe that based on an illness, coworkers who held me in high esteem and who I held in high esteem would immediately turn on me. But I got a death threat, I.
Lisa: You wouldn’t shut up about it as soon as you were diagnosed, you put it on the Internet,
Gabe: I did.
Lisa: Because you were off for a couple of weeks after being the hospital. OK, where were you? Oh, well, I was at the mental hospital and now I’m back. And I had pleaded with you not to do that because, yeah, I knew that was going to turn out badly. I knew it was. I knew this would hurt you at work. And we desperately needed you to continue working. But to be fair, I did not anticipate how bad it would get and how deep the stigma in our society really ran.
Gabe: I want to defend my reason for not listening to you. It’s just.
Lisa: There’s never a reason for not listening to me.
Gabe: I can think of many. It’s you told me that people that I respected were going to turn on me. Why would anybody believe this? I just obviously I want to be right. I want to be clear. I love winning arguments with Lisa. In fact, that’s pretty much my only hobby in the new COVID world, but.
Lisa: That’s too bad you suck at it.
Gabe: I mean, I think I’m holding my own,
Lisa: I could do this all day.
Gabe: I but, you know, Lisa, if I told you, hey, your parents are going to stab you in the back, you need to not do something. You wouldn’t believe me, right? You’d be like, no, my mom and dad aren’t going to do that now. Now, obviously, that’s your mom and dad. People are like, well, yeah, that’s her parents. I recognize that I should not have had this level of faith in my coworkers. But as you know, Lisa, I was a rock star there. I was the youngest person who was ever hired. I was well respected. I was on a management track. If I never got sick, I would probably still be there.
Lisa: Yeah, doing quite well.
Gabe: I was doing quite well when I hired and they only wanted to give me more. Why on earth would I think that that would suddenly change based on a diagnosis that was given to me by a doctor? Obviously, you were right. I know you were right. I give you full props, but I’m still struggling with why? How? This is absurd that you were right. It’s absurd.
Lisa: At a certain point, dealing with the stigma and the reactions of other people for you actually did become more difficult than dealing with the illness itself. Yeah, it was terrible. I just. How did you not know this? How could you not have known that this was in our culture ahead of time? I mean, what was your own reaction to people with mental illness? Were you nothing but progressive and understood and had nothing but sympathy and compassion?
Gabe: I did not really know anybody with mental illness, so I never had an opportunity to try this out, so.
Lisa: There wasn’t anybody in your family who just couldn’t get their shit together?
Gabe: Well, yeah, that’s not mental illness, that’s couldn’t get their shit together. My family didn’t recognize mental illness in me and I didn’t recognize mental illness in me. So I was that person. I couldn’t get my shit together. And we sure as hell didn’t think it was mental illness. Once it was diagnosed with mental illness. Let’s flip it and pretend that I’m the perfectly sane one and a family member is diagnosed with mental illness. I would not have threatened them or been mean to them or dismissive of them. But I am fairly confident that I probably would have done nothing. And silence implies consent. In my workplace, not every single member of my workplace attacked me. That’s nonsense. Only three or four people did the horrible stigmatizing things that I’m talking about. The other 30 just sat there and watched and did nothing.
Lisa: Like management.
Gabe: Like management, for example, so, yes, so you’re asking me, Gabe, do you live in the real world? I don’t think I would have ever been mean to somebody with mental illness, and I would have thought that doing nothing was neutral or helpful. But in actuality, doing nothing was very painful to me because the people who I thought were my friends and allies turned out not to be in this case. But yes, I would have accidentally stigmatized my mentally ill friends, family or coworkers. I would never, ever have threatened to kill them. I want to be very clear.
Lisa: And I want to point out, you’re not kidding on the death threat thing, that is not an exaggeration. It sounds like it. Very few people believe you when you tell them. But, yeah, that actually happened.
Gabe: It happened in writing,
Gabe: In writing.
Lisa: In e-mails. Yeah, we had the emails, printed them out, took them to management, took them to H.R. and still nothing was done to stop this behavior.
Gabe: No, no. Something was done to stop.
Lisa: Well that’s true. That’s true. You were fired.
Lisa: That definitely did stop that problem.
Gabe: I was let go, they did handle it, they said that I was inviting the conflict, that
Gabe: That was the solution.
Lisa: Yeah, it is unbelievable, if I had not been there, I probably would not believe you. It was so extreme.
Gabe: And that’s another thing that I wish I would have known, it does fit into stigma. I wish I knew that people would stop believing things that I said. Look how we’ve structured this conversation. We’ve made sure that I have brought proof that somebody threatened to kill me because they got angry with me at work and that I was the one let go. I’ve got Lisa here vouching for me. Why isn’t my word enough? And I’m constantly with my friends, my family members and even on panels where I say that things happened and people are like, well, did they? Are you sure? And this is particularly traumatizing for people with mental illness when they report abuse or misunderstandings from doctors, therapists, orderlies, hospital staff, because we say, hey, X happened and the other side says, no, it didn’t. And they’re like, well, you know, yeah, it didn’t. I mean, you’re the crazy one. So we don’t have to believe you. We’re not even going to investigate. I didn’t know that before I was diagnosed with bipolar disorder, Lisa. I commanded so much respect and people saw me as somebody with so much integrity that if I said it happened, that was the end of it. After I was diagnosed, I better bring along the smoking gun, proof and, you know, something notarized from God. It was, it was very, the contrast was incredibly stark for me.
Lisa: You know, I’ve been stable for so long that that really doesn’t come up for me very much anymore, but every once in a while I’ll mention maybe offhand that, yeah, I take antidepressants, I’ve taken them for a long time, and someone will suddenly, after years of knowing me, start acting differently or say something or be like, huh? Really?
Gabe: We’ll be back in a minute after these messages.
Announcer: Interested in learning about psychology and mental health from experts in the field? Give a listen to the Psych Central Podcast, hosted by Gabe Howard. Visit PsychCentral.com/Show or subscribe to The Psych Central Podcast on your favorite podcast player.
Announcer: This episode is sponsored by BetterHelp.com. Secure, convenient, and affordable online counseling. Our counselors are licensed, accredited professionals. Anything you share is confidential. Schedule secure video or phone sessions, plus chat and text with your therapist whenever you feel it’s needed. A month of online therapy often costs less than a single traditional face to face session. Go to BetterHelp.com/PsychCentral and experience seven days of free therapy to see if online counseling is right for you. BetterHelp.com/PsychCentral.
Lisa: And we’re back, talking about things we wish we knew when we were diagnosed with mental illness.
Gabe: Another thing that I wish I knew when I was diagnosed is that living publicly with bipolar disorder has this exceptionally high cost. I just thought that being who I was enough. Like that was enough. Like Gabe, why are you telling people you have bipolar disorder? Because I do.
Lisa: Well, I think that you knew something was wrong, something was clearly wrong, you had this underlying wrongness. And so when you finally had a name to put to it, you were just so relieved. You felt that it justified a lot of your behavior and you were just so relieved to finally have an answer, to have a word, to have a way to express what was happening, that you wouldn’t shut up about it. You told everybody, which I advised against.
Gabe: I didn’t expect telling people that I had bipolar disorder to absolve me of the responsibility. I thought that it provided a clear explanation of my behavior, which would lead to forgiveness or understanding or mending the relationships and.
Lisa: Right, or a chance to explain further.
Gabe: And in some cases, it did. My relationship with my parents got a lot better once they understood that, OK, Gabe isn’t a jackass, he’s sick and he’s working on it. It gave us a starting point to mend fences. They now understood why my behavior was erratic in a way that they did not before. And I understood why my behavior was erratic in a way that I didn’t understand before. That’s what I was excited about. That’s why I told everybody. I guess I don’t want people to think that it only had bad consequences. If I could do it over again, I would only tell my family and friends and I would not tell anybody at work.
Lisa: That would also be what I would wish for you. This just gave you so much insight and understanding into yourself that you wanted to share it with others. You wanted them to also have this insight and understanding into you. It became an important thing to you that you wanted to tell other people about. We talk about that a lot about should you be open at work? Eh, good for the cause. Might not turn out so well for you. There’s a definite cost to that. And you paid it.
Gabe: Ultimately, I’m happy with my decision, I get to be me.
Lisa: But you would have liked to have done that on your own terms, I would say that you are not, in fact, happy with that particular decision. If you had it to do over again, you would not have told your work back then.
Gabe: I would not have.
Lisa: You might still have ended up in the same place or thought to yourself, hey, the very fact that I can’t tell these people means I need to go become a mental health advocate. But yeah, you would not do that over again. It was not worth it.
Gabe: This is of course, one of those interesting lemonade out of lemons things. The reality is, is I do regret it. I regret it a lot. And at times I regretted it more than others. But in many ways, it sort of reminds me of the guy who applied to be the piano player at the brothel.
Lisa: Ok, I’m not familiar with that story.
Gabe: Oh, it’s it’s.
Lisa: Oh, good a chance for you to share an anecdote.
Gabe: You know, I love anecdotes, so this guy comes to town and he needs a job, so he walks into a brothel and he says, hey, are you hiring for anything? And they said, well, we’re hiring for a piano player. Can you play the piano? And he says, no, no, I can’t play the piano. And they said, well, that’s the only job we have. So he goes out and he tries to find a job and instead he starts a business. And 20 years later, he’s a multimillionaire. He’s on the world stage and everybody loves him. And he’s just really famous and he’s really rich. And his mother says to him, you know, don’t you wish that you would have taken piano lessons? Imagine what you could have been. And he thinks about it for a minute and he says, Huh, I guess I’d be a piano player in a brothel. The point is, is that you never know how things are going to interconnect or work out or go together. And in this case, him ignoring his mother’s wishes to play the piano made him a multimillionaire. But it can turn out many different ways. In my situation, if I hadn’t told anybody, yeah, I’d still be in that job. Maybe I’d be making lots
Gabe: Of money. Maybe I wouldn’t. I don’t know. I am fairly certain that if all of these bad things hadn’t happened to me. I never would have become a mental health advocate because I became a mental health advocate so that nobody else had to go through this misery. I guess the misery, it was training to be an advocate. I’m just so sad that this misery exists. And that I had to go through it.
Lisa: But you don’t know how it would have turned out, maybe on your way to that job, you would have gotten hit by a bus.
Gabe: Yeah, you always say
Lisa: It totally could have gone another way,
Gabe: You always say stuff like that.
Lisa: Because you always go with the best-case scenario. That’s not necessarily what could have happened. Anything could have happened. You might have ended up in the exact same place.
Gabe: Yeah, we all get that. My only point is that I would not have become a mental health advocate if bad things didn’t happen to me, the only reason I was an advocate is because bad things happened hard stop. I went through hell and I saw other people going through hell and I became a mental health advocate to stop them from going through hell. Some people would argue that’s worth it. I don’t know that that’s worth it. I’m just saying that’s where I ended up. This is one of those things that people will debate until they’re blue in the face. Oh, well, if you’re happy now, it all turned out the way it was supposed to. I don’t know that I’m leading my best life, my worst life or just a life. The bottom line, though, is, is had I made different decisions, I’d end up in a different place. And people seem to like this show. So I guess the job that fired me for getting a death threat did all of our listeners a solid.
Lisa: You’re welcome. Going back to the theme of the show, you do wish that you had known that this would happen, you wish that you had known how deep the stigma went so that you could have prepared for it differently.
Gabe: Yeah, and then I never would have done it. Never would have done it. Never would have told them at work.
Lisa: If you wanted to tell people at work now after so many years of stability or recovery, that’s a whole different thing than right at the beginning when it’s still new to you and you’re still adjusting and you’re still coming to terms with it.
Gabe: And I wish I knew that conversations like this had to take place where I would be sitting at home with my wife and saying, OK, somebody asked me why I was out for six weeks. Now when Jenny was out for six weeks, she said it’s because she had a baby. And when Jimmy was out for six weeks, he said it’s because he broke his hip in a jet ski accident. Now, I was out for six weeks being treated by a doctor in a hospital. But you’re saying that I should lie. Like that’s, that feels bad to me. You know, Jimmy and Jenny, they got casseroles and cards and letters and there was a potluck when they came back, they decorated their desk. When I came back, there was nothing. There was nothing.
Lisa: No casseroles, not a casserole illness.
Gabe: Nothing, nothing.
Lisa: And at the next job, we told absolutely no one.
Gabe: Yeah, and it did turn out better in terms of none of the stigma, none of the discrimination, but I had a very difficult time making meaningful connections with my coworkers because I felt like I was always on guard and always hiding. And that juxtaposition, the openness was bad. The being closed was bad, made me pick the lesser of two evils, which I decided to go ahead and be open, knowing full well that I was inviting stigma, discrimination and chaos into my life. It was a very difficult decision and frankly, it sucked that I had to make one. I do wish that I would have understood that. And you know what else? I wish I would have understood the seething anger that accompanied this discrimination and this diagnosis and the way that it impacted my, my. Lisa, I was I was angry.
Lisa: You know what I’m going to say, this is what white male privilege is, because you’d never had this experience before,
Gabe: That is true.
Lisa: Because there’s been plenty of times that something has happened to me and I think to myself, is this because I’m a woman? Is he not taking me seriously because I’m female? I’m not sure. Maybe he’s just a jerk who doesn’t take people seriously. But I wonder. You never had to wonder these things.
Gabe: I never did.
Lisa: That’s what privilege is. Never wondering about it. So now you started thinking to yourself, huh? Is my boss giving me this problem because he knows that I’m going to be out for a psychiatric reason? Or is he just not a very good boss? You never had to think about how you were portrayed to other people. You could just relax and be yourself. You didn’t have to constantly be on guard. That was very difficult for you. You just didn’t have any experience with it.
Gabe: None, none whatsoever. I could just be who I was, and if I didn’t get the job, it’s because I didn’t get the job. I didn’t have to wonder if I didn’t get the job because I had bipolar disorder. This has been explained to me in so many different ways and so many times. And it’s fascinating to me because you’re right, this set me up higher to fall further. And in that way it’s a negative. But on the other hand, cry me a river. You had all of this free birth right stuff because of your race and gender. I struggle with this a lot because I don’t want to come off as arrogant. But that was difficult for me.
Lisa: It was. It was surprisingly difficult for you.
Gabe: I didn’t have any training or experience at this, you know, my father is a white male, too. He didn’t teach me any of this, probably because he didn’t know it existed. Nobody prepared me for this. And it made it harder suddenly wondering if people liked me based on something I couldn’t control.
Lisa: This lack of confidence was very difficult for you. It was surprising to me at how difficult that was for you.
Gabe: And this manifested as rage, just literally rage, I was angry all the time, and to try to get ahead of this, I would just explain to people why I was pissed off and why I had been wronged and how the universe had screwed me. And remember what you said there, little Kiner?
Lisa: Yeah. I said to you, yeah, God f**ked you and nobody cares, you can’t pay the bills with your sad story.
Gabe: I would like to point out you were wrong
Lisa: Yeah, yeah, yeah.
Gabe: About the second part.
Lisa: Now you’re paying the bills with the story, yes, yes, yes, anyway.
Gabe: But you were right. No, I was only alienating the few people that I had left, but I didn’t realize at the time. And truthfully, I don’t think you realized at the time either how much of this anger was symptomatic.
Lisa: Yeah, all the time.
Gabe: I think that we saw bipolar disorder as the depression and the mania and the grandiose thinking. I don’t think that we considered that anger was part of bipolar disorder. And I say that because in the early years, we never reported that level of hostility or anger to my therapist or my doctor. It wasn’t a symptom that we were on the lookout for, which is one of the reasons that it makes the list of things that I wished I knew when I was diagnosed, because I wish that I could have told my therapist, my doctors how much anger I was actually having.
Lisa: And gotten some help.
Gabe: Yeah, I could have gotten some help for it. Once we understood it, remember? I went to anger management. We started talking to my therapist about anger. And you were the start of that because I realized that I had to do something about anger. And when I started talking about it openly, that’s when I found out that there was this intersectionality or connection or symptom. And I was like, well, all stuff that would have been good to know yesterday.
Lisa: I feel that a little bit with my own diagnosis, with depression, when I first started getting treatment for depression, in my mind, depression was sadness. So the doctor said, how are you doing? Well, I’m not sad. There you go. It didn’t occur to me that there were other symptoms, the fatigue or the lack of motivation. I didn’t associate these things with depression. So when it came time to tell a medical practitioner how I was doing, I was leaving out huge swaths of the story, which no doubt led to me getting worse care than I would have otherwise. To add to the things you wish you knew the day you were diagnosed, just more about bipolar disorder, more about the symptoms, the symptomology, what was going to happen in the course of the illness. It would have been nice to just know more.
Gabe: And that leads me to another thing that I wish that somebody would have told me when I was diagnosed, that support groups are not bullshit.
Gabe: They just they sounded so I had seen 12 step programs portrayed on TV with everybody in the basement and all of the who’s going to share. And I just I mocked them.
Lisa: Me too
Gabe: Just listen to me.
Lisa: I was shocked.
Gabe: I made fun of support groups and then we got so desperate, Lisa, you made me go because we had just run out of options.
Lisa: Yeah, there was just nothing else to do.
Gabe: We had zero, zero hope that this would be effective and it turned out to be one of the most influential things in my recovery.
Lisa: It made a big deal at the time, for me too.
Gabe: And to go from openly mocking something and saying that it was stupid and wouldn’t work and it was dumb and only weak people go, that’s the other thing. I mocked the participants. I just, I feel so incredibly guilty for being such an asshole. People were doing something that was providing value to their life. And I was mocking them like, how arrogant is that? When you made me go, Lisa, as you know, we live in a big city and I was able to find a lot of support groups. And the one that I went to was called Bipolar Bears because I was scared to go. And frankly, that name, that name sounded
Gabe: Comforting to me. I went to the very first one, and this didn’t happen immediately. I was in there
Lisa: Yeah, you had to go to for a few before you started feeling there was value.
Gabe: Yeah, I was in there with a few people and I didn’t kind of know what I thought about it, but we had agreed that I would try to, I forget how many I would agree to? I Would go to a few.
Lisa: It was like three or four.
Gabe: Yeah, then the magical moment for me was when I was sitting in that room and a woman was just talking about her day. That’s it. There was nothing mind blowing or mind shattering. And she said something about cleaning the house and working with her husband and getting the kids ready. And I just looked at her and she looked so normal. She was a wife and a mother and a homeowner. Now, I have no idea this woman’s name. I know nothing about her. I would not recognize her if I passed her on the street to this day. But I immediately realized that she was a woman living with bipolar disorder, leading the kind of life that I wanted, which meant that I could do it. It’s doable. It’s so much easier to do something after you see somebody else do it first. That was probably the biggest moment in support groups. I’m a huge fan of them. As you know, Lisa, I went on to become a support group facilitator. That’s how much I believe in these. I was a volunteer for years. I meet a lot of people, especially men, especially men, that the minute you bring up support group, they roll their eyes and they think all the same things that I did the day that I was diagnosed. I wish someone would have gotten through to me and said, you’re an idiot. Go. They are amazing. There’s lots of different types. There’s lots of different options. There’s, there’s 12 steps. There’s discussion. There’s I’m not even naming them all. They’re led by peers. They’re led by therapists. There’s, there is one that will work for you where you are if you put a little elbow grease and Googling into finding them.
Lisa: That’s the thing to emphasize, that there are so many options, especially for us in a large city, if one of them isn’t working for you, the structure, the folks, whatever, there are other choices out there. You aren’t constrained by just this one model.
Gabe: And you age out, you know, I don’t go to the Bipolar Bears anymore, I went for a long time and then I stopped. I went to the Depression Bipolar Support Alliance for a while. I went to the Connections group for a while. There was a 12-step program, Emotions Anonymous, I went to for a while. And you’re thinking, well, if they’re all good, why did you switch around? Because I was in different points in my recovery. Also, you know, sometimes just groups’ dynamics change. You know, you might like a group for a while and then decide, well, you know, I’m not digging this group anymore, go away for a year and then come back. Well, there’s probably going to be all different people. That’s OK. I didn’t understand any of this and I can only imagine how helpful it would have been if I would have gone immediately after diagnosis rather than waiting, what, a year? 18 months? I guess what I wish I would have known, Lisa, is to keep an open mind.
Lisa: Well, you know, the silver lining of COVID is that a lot of support groups are online now.
Lisa: If you are in a rural area, you don’t have a lot of options where you live, there’s a lot of options online.
Gabe: Very, very true. Google it and check it out.
Lisa: I went to one of the family support groups, and you’re saying that the thing that did it for you was seeing what a vision of the future could look like, that this was a possibility. The thing that did it for me was seeing that I wasn’t alone. It was actually the very first meeting when some gentleman was talking about his girlfriend and it could have been you. And I was just amazed that even though these people, you know, they were different ages, they had different jobs, different genders, but they were having such similar problems. That was very powerful. That I wasn’t alone on this out on my own. This wasn’t completely unique, that no one else had ever dealt with before. That was very valuable to me. And luckily, that support group was free because another thing I wish I had known on the day that you were diagnosed is just more information about health care and how the health care system works and how health insurance works. That was just a whole other problem. You’re not just dealing with the illness. You’re dealing with how to access care for the illness.
Gabe: There were two fascinating things that happened for me in regards to the mental health care system, one, it was just how messed up it really was. And I had money. I had health insurance. I had a support group and resources and lived in a big city. And two, your reaction to it, because you had been battling insurance companies for a physical health problem for a long-time and.
Lisa: You were frankly lucky to have me.
Gabe: I was very lucky to have you.
Lisa: Because I had a lot more experience than the average.
Gabe: Yes, the thing that you kept saying is, oh, my God, I thought that physical health care was messed up. This is so much worse. And I just, I thought that you got sick. You used your insurance to get help. That’s how I understood it. You were smarter than that. But you thought you jump through all the hoops and you got care. But there were so many extra hoops.
Lisa: Yeah, I was shocked and I didn’t expect it to be a good system or to be easy. I thought it was going to be complicated. It was so much more than I thought. And the part where everything is separated that there’s this divide between mental and physical health just creates its own problems.
Gabe: I have this, this really good memory of you saying, OK, Gabe, we’ve got you approved to see the doctor for three visits. And I said, well, what if I’m not better in three visits? And you said, I don’t know. They said that you have to be better in three visits. And I said, is this typical? And you said, no, no, it doesn’t work this way in any other illness. You get cancer. They’re not like, OK, well, you can see an oncologist three times and hopefully you’re cured. But in mental health, they’re like, oh, we’ve approved three visits. We’ve approved six visits. The insurance company is like, what? Magic eight ball? Bipolar disorder will be cured for Gabe in oh, looks like three visits. Where are they getting this number? And listen, I had health insurance. This was the Mercedes plan.
Lisa: You did, you had amazing insurance.
Gabe: Don’t even get me started if you have Medicaid or Medicare or crappy health insurance. Like I said, I was cruising along in the Mercedes and I thought it was shit. Oh, some people, they don’t even have a car. It’s so bad.
Lisa: Well, not to mention the shortages and the wait times, every place you called would be like, oh, five months, six months. It was like, really? Really?
Gabe: I’m sick now, I’m sick right now.
Lisa: Apparently, America needs a lot more psychiatric practitioners. I just couldn’t understand why the market wasn’t satisfying this. If there’s so much demand for psychiatrists and people are willing to pay for it, why aren’t there more psychiatrists?
Gabe: Because people can’t afford to pay for it, it’s one of the lowest paying specialties in all of the medical field.
Lisa: Ok, fair enough.
Gabe: You need just as much training and it costs just as much money to be a psychiatrist as it does any other specialty. Yet here you are not only making less money, but every single psychiatrist that I’ve ever talked to is like we’re just looked at like we’re evil. You know, Lisa, we did that anti-psychiatry episode. And remember, they’re the target of this. Not only do they have to spend hundreds of thousands of dollars to get this job, they are also paid less and they have an entire movement of people calling them murderers. I’m surprised we have any. We don’t have enough doctors. I don’t know how we’re going to get more.
Lisa: Gabe, out of curiosity, is that something you wish you’d known when you were diagnosed?
Lisa: Would that have helped?
Gabe: Oh, that’s I, you know, I’ve never really thought about it before, I just on one hand saying, no, I’m glad I didn’t know that. I’m glad that I thought the world was fair and that everybody loved me. Seems
Gabe: Like I’m burying my head in the sand. Right. But that would have just been so overwhelming. Could you imagine if the day that I was diagnosed, somebody would have told me all of this, all the stuff that I’ve learned. I think it’s better that I did not know. But you recognize that a lot of people who are newly diagnosed know this is a problem because it’s preventing them from getting care. I’m saying that I think for my care, it’s better that I didn’t know, fully recognizing that the people who know the day they’re diagnosed are the most vulnerable people there are.
Lisa: I’ve been thinking about this as we’re talking about this, I do wish I had known these things on the day I was diagnosed or the day you were diagnosed, but I don’t think I would have been super receptive to some of them. I think if someone had tried to tell me any of these things, I would have dismissed it or not believed it or thought it didn’t matter.
Gabe: So, wait, you mean to tell me that if somebody would have warned you about this system, that you wouldn’t have believed them? Kind of like how when somebody warned me about stigma, I didn’t believe them? So you’re saying that you would have made a Gabe type decision because it just sounds so incredulous? Interesting.
Lisa: I don’t think that’s interesting at all.
Gabe: But just for the record, I agree with you, I don’t know that I would have understood this concept, I.
Lisa: I don’t know how you would even begin to explain it.
Lisa: What are you going to put some of this in a pamphlet? Although I do feel like the medical practitioners around us had some non-zero responsibility, because that’s what informed consent is, to tell us some of this stuff, especially the big one for me is the time aspect of it. I had no understanding of it just wouldn’t be a linear process, there wouldn’t be a clear path forward, and how long it was going to take for you to get better. I had no concept of that. And the people around us knew. Your doctors knew. They all knew. They had to know that our expectations were completely unreasonable and no one ever said, hey, that’s completely unreasonable. I don’t know that I would have believed them, but I feel like they had an obligation to let us know that. And then we could have done what we wanted with the information. Chosen to believe it or not.
Gabe: Obviously from this vantage point, we now know all of the things that we wish we knew when we were diagnosed. But I’m very interested in that thing that you said where somebody should have told you, because it’s their responsibility to tell you. But as we’ve just illustrated, somebody did tell me one of these things and you admitted that if somebody had told you, you wouldn’t have believed them. How do we wrap our arms around this idea that simply telling people isn’t enough? We’ve both admitted on this show that either we didn’t use the information, Gabe, or that we wouldn’t have believed the information even if we had it. Lisa. How do we get this information to people when the two people on this podcast having this discussion have admitted that we wouldn’t have accepted the information and/or didn’t accept the information?
Lisa: Wow, that is a really good question, I, I don’t even know how to react to that. I don’t know. I’m not sure. But I am angry. I am upset that nobody told me this, especially your doctors, your therapists, et cetera. You’re not unique, this process of how long it takes and the fits and starts and the frustrations, that is not unique. That is pretty much universal. So they knew. They knew that this was the path before you and it wasn’t even hinted at. I don’t think that’s right. I think that information should be shared with us. But, yeah, I don’t know what I would have done with it. So I don’t have a good answer to this problem.
Gabe: I’m still hung up on this idea, Lisa, that you believe that doctors should tell us, I don’t think we would have listened to doctors. I didn’t listen to you. You already admitted that if somebody had explained to you that this is the way that it worked, you wouldn’t have believed them because it’s just so utterly ridiculous. Your brain would have rejected it outright. And there’s a shortage of doctors. Do you really think that doctors should sit down and try to explain all of this to us?
Lisa: They could put it in a pamphlet.
Gabe: Could they? Could they put it in a pamphlet? And if it was that easy, why has nobody done it? But actually, it’s on the Internet. You know that it’s on the Internet, right? Hell, it’s in this podcast. Is the problem solved? Clearly, we are not reaching the people. Why are we not reaching the people with this information? That’s my question to you. The information is out there. Why do people not either A, consume it or B, believe it?
Lisa: Because they don’t want to.
Gabe: Now, that seems like a cop out.
Lisa: Because it’s sad and you don’t want to believe it.
Gabe: It is sad.
Lisa: The same reason everyone who gets a cancer diagnosis decides that they’re going to be in the percentage that makes it.
Gabe: But that’s, that’s a life or death thing that’s, that’s
Lisa: And this isn’t?
Gabe: I know, I mean, like I understand what you’re saying and I’m, but you’re confusing the issue in a way that I don’t think is serving this discussion. What I’m saying is, is I trusted you. You know that I trusted you. I did 99% of the things that you told me to do. And I followed you blindly. But you told me not to tell the people at work, to keep this on the down low or that discrimination would follow. And I did not believe you. Clearly, there’s nothing more that you could have done. If I didn’t believe you, I certainly wouldn’t believe a pamphlet. I certainly wouldn’t have believed a doctor. And as you just illustrated, if somebody had explained this to you, you wouldn’t have believed them. If somebody would have told you this is how the mental health system works. You, Lisa Kiner, would not have believed it. So no, no, it’s not because people don’t want to or because they’re stupid. And if they are, why didn’t we believe it? Because Gabe and Lisa are stupid and it’s sad and we don’t want to? Because we didn’t do it. So whatever reason you come up with as to why people don’t understand this applies to Gabe and Lisa. So be very careful with your next words because you’re describing us.
Lisa: I have no words, I’m going to have to think about this, I don’t know.
Gabe: It’s stunningly, surprisingly complicated.
Lisa: It is surprisingly complicated, yeah, it seemed much more straightforward when we started.
Gabe: I love that I was able to stump you.
Lisa: Eh, I wouldn’t say stump, just consider more deeply.
Gabe: You had unlimited time to answer this question and you couldn’t, and we’ve been mental health advocates for a decade, and if we knew the answer to this question, we’d do it.
Lisa: Does anybody have the answer?
Gabe: I don’t think people have the answer. I think that people have some answers. Peer support, support groups sharing information. This podcast, I think that does get the information out there. But does it get it out there in a meaningful way for people who are unaware that they need it? What are the odds that somebody is going to get diagnosed on Monday and find our podcast on Tuesday? And more specifically,
Lisa: Believe it.
Gabe: Believe it or connect? You know, maybe if they find a middle-aged guy who gets diagnosed with bipolar disorder and he’s like, hey, I talk a lot, too. And I hang out with my ex-wife and I’m from Ohio. You know, I trust this guy. But it’s also possible the person listening to this podcast is of a different race or socioeconomic status or gender or lives in California and thinks these two are idiots. Our information is correct. But how do we get people to connect with it, to relate to it, to understand it, and most importantly, remember it when they need it the most?
Lisa: Is this something we can outsource to the comment section?
Gabe: Listen, if you have the answer hit up show@PsychCentral.com and tell us about it. We would love to hear from you. Wherever you download this podcast, please, please, please subscribe. And as I tell you every week, I am the author of Mental Illness Is an Asshole, which you can absolutely get on Amazon. But if you want to be one of the lucky people to get Not Crazy podcast stickers, go to gabehoward.com, buy it there. I’ll sign the book, and I’ll send you those stickers absolutely free.
Lisa: And we’ll see you all back next Tuesday.
Announcer: You’ve been listening to the Not Crazy Podcast from Psych Central. For free mental health resources and online support groups, visit PsychCentral.com. Not Crazy’s official website is PsychCentral.com/NotCrazy. To work with Gabe, go to gabehoward.com. Want to see Gabe and me in person? Not Crazy travels well. Have us record an episode live at your next event. E-mail firstname.lastname@example.org for details.
The post Dear Newly Diagnosed: What We Wish We Knew first appeared on World of Psychology.