Involuntary Spokesperson for Mental Illness (Not Crazy Podcast)
Are you the only person in your social group with a certain mental disorder? In today’s podcast, Gabe and Lisa discuss how it feels to be the only person representing your illness — essentially becoming an involuntary “spokesperson” — and the pressures that come with it. Click on the player below to listen now!
Computer Generated Transcript for “Involuntary Spokesperson” Episode
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Gabe: Happy Tuesday, everybody, and welcome to the Not Crazy podcast, I’m your host Gabe Howard, and with me, as always, is the fantabulous Lisa Kiner.
Lisa: Hi, everyone. Today’s quote is from Emma Watson. When people call me a role model, it puts the fear of God into me because I feel like I’m destined to fail.
Gabe: Now, Emma Watson is Hermione Granger.
Lisa: The best character in all the Harry Potter’s.
Gabe: I love Hermione Granger, muggle born very, very cool, rose to the top and frankly did not get the respect that she deserved.
Lisa: Not even close.
Gabe: But as an actress, she’s right. Now, I like that you used a quote from Emma Watson because I was about to open up the whole show with how hard it is to be in the public eye and have people watching you. And I was going to explain that, you know, I don’t always know what to do as a podcast host, as a writer, as a social media influencer, because I’m afraid that I’m going to let people down. And it’s really hard to have this level of influence or fame. And then you said Emma Watson. So, I’m a nobody. I just, way to keep me humble.
Lisa: Celebrities are just like us. She has the same worries as you.
Gabe: I understand what she’s saying on every level, I want to be clear, I know that I’m not a celebrity. I’m a dude with a podcast. I have a following. I wrote the book, and I’m thankful for all of my listeners. I’m thankful for all of the people that I meet out in the world. But there’s a lot of pressure for me and I’m not always sure what to do with that pressure, Lisa. Part of it is because as a person who lives with bipolar disorder, I’m in recovery. But I define recovery as spending more of my life living it than I do managing bipolar disorder. But as you know, I spend some amount of time managing bipolar disorder every day. I’d kind of like to talk about that more. But then people look at me and they’re like, oh, well, you’re not in recovery. You have depression.
Lisa: Well, relapse is part of recovery.
Gabe: But I don’t think that’s a phrase that’s well understood in mental illness and mental health circles, I think that’s a phrase that’s well understood in substance abuse. And I, you know, I’m thinking a lot of things right. My mind is just but that is sort of one of the things right. Over on the substance abuse side, 100% is defined as recovery. You have to be completely abstinent from drugs and alcohol. You can’t be completely abstinent from bipolar disorder, depression, psychosis, schizophrenia. It doesn’t work that way. Recovery is, well, one, it’s sort of personal, but it’s mostly defined as, again, spending most of your time symptom free, keyword being most.
Lisa: Well, recovery is self-defined, everyone decides what level is theirs.
Gabe: It is true that it’s self-defined, but I think there are some general guidelines, for example, if you’re symptomatic for six weeks and then you’re well for 10 minutes and then you’re symptomatic for six weeks, you can self-defined that as recovery.
Lisa: Well, it depends, where were you before? And how bad are your symptoms? How are you defining symptomatic? There’s just so much nuance here
Gabe: And therein lies the problem, it’s that nuance, one of the problems that I have is I feel as though I’m an ambassador for people with bipolar disorder.
Lisa: Yeah, you somehow have to represent every single person who’s ever had mental
illness ever. People will even ask you questions and obviously your experience will be completely applicable to every other person with mental illness ever. That happens to you a lot.
Gabe: And that’s not a ridiculous assumption on their part.
Lisa: Yes, it is.
Gabe: Well, no, it’s not, because the majority of the people I meet, I meet as a speaker living with bipolar disorder. They have brought me into their fold as an influencer, as an expert, as a podcaster or as a writer. It’s not like they just randomly found me on the street and said, hi, Gabe. Oh, hello. Hey, I heard you had bipolar disorder. Yes, I do live with bipolar disorder. Excellent. I have a question about Bobby. Who’s Bobby? Bobby is my sister’s cousin’s friend’s boyfriend. Why? Why do you think I’m qualified to answer this? The answer of why they think I’m qualified to answer this is because I have a website that says I’m qualified to discuss it.
Lisa: All right, that is fair. I had not considered that they are not selecting randomly.
Gabe: They aren’t, but it’s important to understand that there are many people who they did select randomly, you know, they’ll be at a party and they will meet Jane and Jane is just minding her own business. She’s there. She’s cool. She’s having fun. It’s been a long work week. And somebody’s like, well, you know, Jane lives with depression. And all of a sudden, they start asking her a hundred questions about depression. And Jane is now struggling because Jane is aware that if she says, oh, my God, living with depression sucks and it’s awful and nobody should want to do it, well, she wouldn’t have wanted to hear that when she was sick. But if Jane says, oh, it’s fine, you’ll be great. I live a great life and I love everything, well, that’s sort of like false hope and can make people feel like they’re failing right now. That’s just when Jane runs into a stranger. You know, Jane has been through a lot with her depression. So now she’s starting to get symptomatic. She’s starting to get a little depressed. She’s starting to feel kind of bad. She doesn’t want to tell her family because they’re going to be like, oh, no. Jane needs the hospital. Jane needs pills. Call the doctor, batten down the hatches. And Jane just wants to express an emotion. So, Jane’s best play to be left alone is to hide all of her symptoms of mental illness, which, as you know, Lisa, is dangerous.
Lisa: That is a problem. People expect you to always be in the middle and any single thing you ever do, any sign of humanity almost is seen as a bad sign. It’s almost like people want you to have no emotion. And I do it, too. Every time you get excited about something, I think, huh? Is this where it starts? Are we headed down the wrong path? Or if you have a bad day, I think I need to monitor this. Need to keep a close eye on this. This might get worse.
Gabe: And you’re my bestie, you’re like my best friend, and I can’t even have an emotion without you starting to I don’t
Lisa: I know.
Gabe: I don’t even know what you’re doing, but,
Gabe: Yeah, worrying. I hate to call you out publicly, but what you’re doing is infantilizing me.
Gabe: You’re not treating me like an equal. You know, Lisa, you’ve been there through some of my worst times ever. So, I understand why you’re concerned. I understand the trauma. I understand the desire to get ahead of it. I understand the worry. But here’s where this goes left of center real quick. So, you see something in me you don’t like, following along so far?
Lisa: It’s not that I don’t like it, it’s that I’m worried about it.
Gabe: Ok, fine, you see something in me that you’re worried about, we on the same page?
Gabe: All right, you think to yourself, I am concerned that that is off. OK, then you treat me like an equal and you ask me, Gabe, I have noticed X, Y and Z. Is everything OK? And I say, yes, I am fine. Thank you for asking. And then you don’t believe a word that I just said and act as if I didn’t speak at all.
Lisa: Well, that’s why I don’t usually ask you, because it doesn’t matter what you say.
Gabe: Well, and both things are problematic, right? Because if you don’t listen to my words, we’re clearly not in concert, in partnership, you’re not treating me like an equal. And that’s just horrific. Like, who wants that friend? Right. And if you’re not even willing to ask and you’re just making assumptions, what kind of a relationship can survive with one person just assuming for the other person?
Lisa: You got to admit, I’ve gotten a lot better over the past few years,
Gabe: You know, Lisa,
Lisa: But yes.
Gabe: When you’re at the bottom of an assumption. When you’re like 100% of the time, Gabe is wrong and then you improve to 50% of the time, Gabe is wrong… Again, not based on fact collection, but based on assumption. I’m not noticing much of a difference in my day to day life like.
Lisa: You really don’t notice a difference? You don’t notice a difference in how I handle your moods over the last couple of years? Really?
Gabe: I mean, I notice that it is definitely better now that we don’t live together.
Lisa: Seriously, you cannot honestly say that it isn’t dramatically better over the last few years.
Gabe: I don’t think that it’s better because what I want is to be equal with you. That’s what I want 100% of the time. I don’t want it the majority of the time, I don’t want it more often than not, I don’t want it 95% of the time. I refuse to believe that if at the beginning of our marriage, I believed in some sort of like traditional family values where women were subservient to men 100% of the time. And then throughout the years, I believed that women should only be subservient to men 10% of the time that you would describe that as progress. You are already thinking, wait, you think you can be a misogynist 10% of the time and get credit for the fact that you’re not a misogynist 90% of the time? What, you want a cookie? I can already see it on your face that you’re getting ready to say no. You must treat women with respect 100% of the time. But you have now just argued that it’s OK to make blatant assumptions about my life without considering me some small percentage of the time, because after all, it’s improvement from previous behavior.
Lisa: You are in a difficult position, every single thing you do is scrutinized. You can never just be. Any little sign everyone immediately jumps on. Is this it? Is this it? Oh, my God, is this the end? Is this it? Is this it? Is this it? So, yes, that is a lot of pressure for you because it’s not fair and it’s impossible. It’s an impossible standard that we are asking you to meet, which is basically to be the blandest person ever invented. And a little off topic, perhaps. But yeah, this is one of the reasons we’re divorced because I don’t take you seriously. I think I take you more seriously than I used to. But yeah, and I’ve told this story before. One day when we were married, you said to me, oh, my God, you never take me seriously. You never consider what I’m thinking. And I actually thought, yeah, that’s right. Yeah, you’re right. I do not. I do not take you seriously at all. I am not interested in what you’re thinking or feeling at all, because whatever it is you say right now, it’s going to be different tomorrow. So how invested am I supposed to get in this? How much stock am I supposed to put into anything when in 24 hours it’s going to be completely different? And incidentally, if you ever find yourself thinking, huh, I do not need to consider my husband’s opinions about anything. Yeah. Get a divorce. It’s not going to work out. Just save yourself the time.
Gabe: That’s I mean, you know, but start a podcast with your ex, that’s.
Lisa: Well, yeah, but I understand what you’re saying, and, yes, that is why frequently I do not take you seriously. But you got to admit, I’ve been doing better with that. Although
I will admit that whenever you say, hey, let’s do X, Y, Z, I think, meh, I’ll take action on that in a couple of days, see if he’s still on it by then.
Gabe: We’ve sort of divided the conversation into multiple piles here, right? And let’s kind of take each one, one at a time. I think we’ve established really well that every single person who is living openly with mental illness somehow becomes a designated spokesperson. That’s the word I’m going to use. If you live openly with mental illness or a mental health issue, you become a designated spokesperson for that illness in addition to suffering from it. It’s a great gig. But that breaks up into categories. Not every single designated spokesperson is created the same. For example, I’m a designated spokesperson on purpose. I chose it. I have a brand. I created a website, and I’m doing it very intentionally. So arguably, I’m the least impacted by this.
Lisa: Well, but it isn’t just mental illness, I think people do this for everything, everyone assumes that all experiences can be lumped together. People don’t really like nuance. If you meet someone with lupus, you know, you’re assuming that their experience is exactly the same as this other person you know with lupus. It must be the same way. All things follow the same path.
Gabe: Yeah, we see this in race, in gender, culture. You are married to Viroj.
Gabe: We love Viroj. Viroj is Lisa’s long-suffering husband
Lisa: Not long suffering.
Gabe: Just because you’ve only been married a couple of years. But Viroj is from Thailand and
Gabe: He’s an immigrant. He moved here when he was 13. And when we introduce him, I said, we, notice how I just jumped right into your marriage? It’s now the three of us. But
when we’re out in public and I notice that people meet Viroj for the first time, often he’s the first person from Thailand that they’ve ever met.
Gabe: And they assume that he is representative of all people from Thailand. Which, one is stupid on its face, if you think about it. But putting that aside, he immigrated here when he was 13. So, he’s not even a good representation of a person from Thailand in that he’s lived in America four times longer than he ever lived in Thailand. But they’re like. No, no, no. This is what a man from Thailand is like. The dude’s in his 50s. He’s a dude from America at this point.
Lisa: Yeah, he’s from Ohio.
Gabe: Yeah, he’s from Ohio.
Lisa: That happens all the time, and I think it’s the same thing that you’ve got going on here. People want to find commonalities for some reason. I don’t know if it makes people feel better, if they feel like things are more predictable, but they want like things to go together, or what they think are like things, even if they’re really not.
Gabe: We see this in gender, all men are supposed to behave the same way and all women are supposed to behave the same way. And we even go a step further and, you know, female activities or male activities. And, you know, this is women’s work. This is men’s work. And just on and on and on and on and on. And that’s just nonsense. If we have learned anything in 2020, it’s that that is utter nonsense. And yet they expect it for something as broad as, you know, what private parts you’re born with.
Lisa: Well, the obvious example is race. If you are the only member of your race in a group of other people not of said race, you are the designated spokesperson of that thing. That’s a lot of pressure and it’s a lot of pressure for you. Sometimes when you are the only consumer in a room full of what doctors, family members, whatever, there’s all this pressure on you to be this ideal representation, because any little thing you do reflects poorly on everyone.
Gabe: And that, of course, is a lot of pressure, and I like that you brought up race because there’s so much good research and data and writing from opinion pieces to cultural studies to social studies on that concept that you just described using race.
Lisa: Yeah, representing and tokenism.
Gabe: Yeah, and I don’t want to say that my experience is the same as race because it’s absolutely not, but there are some commonalities there. Like you said, being the only race in a room puts a lot of pressure on you. Being the only mentally ill person in a room, especially with people who are trying to learn about that mental illness, puts a lot of pressure on me because they do expect me to speak for every single person living with mental illness and every single person with mental illness can’t agree, shouldn’t agree, won’t agree, can’t agree on everything. And the very fact that this is their expectation is a burden, because, of course, I want to answer every question with, look, we’re all different.
Lisa: Yeah, that that happens a lot, people will say, well, blah, blah, blah, do you think that my son something, something, something. And every single time I want to say, I don’t know, maybe. I don’t know. There are no hard and fast answers. People are all different. Well, do you think my son could benefit from hospitalization? I don’t know, maybe. It’s like they think that there will always be one answer and one answer only.
Gabe: But of course, it’s also problematic because you have a person standing in front of you that is ready, willing and able to learn, they are asking a person living with mental illness about their experience. They’ve got horrific expectations of my ability to answer it. But it’s quite possible that six months ago they didn’t even care. They weren’t asking at all. They thought they knew. So, when they asked this question, they’re at least admitting that they don’t know. They’re willing to accept the idea that they can be led or taught or reach a different conclusion. But it’s a problem, right? Whenever people say I’m struggling with bipolar disorder, what should I do? One hundred percent of the time, I want to answer, go to the doctor. That’s it.
Lisa: Right, that is the answer.
Gabe: I mean, that is an excellent answer. And everybody should do it. And obviously, I work that into every answer. But if that’s how I honestly answered every question and walked away; I would help nobody. Because nobody listened to me. People need to be talked into this. They don’t understand why it’s important. And again, I chose this. I am the designated spokesperson. Again, that’s the phrase that we’re using. I know nobody designated me, but I choose this.
Lisa: You designated you.
Gabe: Sure. Yes, yes.
Lisa: That’s not exactly fair because one, you designated you and two, you’re not exactly in the same position as other people because you have put yourself out there as this and people have hired you or invited you to come to speak or whatever as this thing, as a representative of this. So, it’s not quite the same for you as it is for other people. But that also puts a lot more pressure on you because every single thing you do is scrutinized. You’re almost under pressure from the rest of us, because if you do something wrong, if you step out of line, it looks bad for all of us.
Gabe: That is problematic, it’s also problematic because we can’t define what stepping out of line is. Let’s be 100% clear, it doesn’t matter how I step out of line. I could embezzle all the money from a charity. I could steal everybody’s dogs. I could burn down an entire neighborhood. And that still does not make me representative of every single person with bipolar disorder. It doesn’t matter what I do. It’s not related to everybody else’s behavior or experience, no matter how extreme of an example I use. But herein lies the problem, Lisa. It’s much more insidious than that. Let’s say that I have a panic attack while on stage. Well, that shows that people with mental illness can’t be public speakers. Let’s say that I suffer a depressive episode and have to cancel a podcast or I became symptomatic and I missed something. Well, that’s why you can’t have the lived experience, right? Because they won’t produce all the episodes on and on. This is a very real reality to my life, just having a symptom of the disease that I will have, unless they come up with a cure, until I die. And then people see this and they’re like, oh, well, this is why we can’t have people with mental illness on the board of directors for our charity
because they can’t attend all the meetings and on and on and on and on and on I.
Lisa: Well, and every single thing you do is attributed to mental illness. Did you miss a day of work? Oh, must be because he’s being symptomatic. Must be the bipolar disorder. No one ever thinks, oh, you must have a cold.
Gabe: Lisa, there’s a million examples of this, and we can talk it to death.
Lisa: Oh, I have an example, I have an example, I have an example,
Gabe: All right.
Lisa: I have the best example.
Gabe: The best example? She’s got the best example.
Lisa: The best example for you.
Gabe: All right.
Lisa: This was, this is the best example of how expectations are set differently for you and expectations are set differently for people with mental illness. Do you remember years ago you were on the board of a prominent mental health charity? Right. And you were the consumer council rep and they had like this agreement of what all the board members had to agree to do.
Gabe: Yeah, the board member agreement.
Lisa: Right. And yours was different. Everybody else, I don’t remember, there was 20 some people on this board. Everybody else had one set of rules. You had a separate set of rules. And one of the rules was that if you missed more than two meetings, you were out. But everybody else had no attendance requirement. Everybody else could miss all the meetings. It didn’t matter. It would be decided on a case by case basis. But you had this expectation. What is that other than stigma? What is that other than discrimination?
What is that other than expressly saying, hey, we expect these people to all flake out? And this was a mental health charity. They should have not had this type of thing. They should have understood that all people are different.
Gabe: I was on that board of directors for three years, and at first blush it didn’t seem like that big of a deal. For what it’s worth, I believe that all boards of directors should have attendance requirements. I don’t like this idea that you can be on the board and never attend a meeting and there’s just no consequence. We need our board members to perform at a high level. So, at first, of course, it didn’t bother me at all because I thought that it was a reasonable expectation. But as my service wore on into the you know, the coming months, in the coming years, there were people that literally never attended a meeting. And when I brought up that they were on their fifth, sixth, seventh meeting, I got told how busy they were and how important they were and how their time was valuable. And they simply did not have time to honor their commitment. And they should not be punished for that. I pointed out that, well, what if I missed meetings because I was sick? It’s an illness. It’s
Lisa: It’s not under your control.
Gabe: Not my work schedule or my family’s schedule or. It’s not under my control. It’s not choices that I made. And they said, well, but if you can’t be here to represent peers and consumers, then you shouldn’t be on the board. You’re literally arguing both sides of the same coin. And the only difference is I have mental illness and the other person doesn’t. And this is a mental health charity. You
Lisa: That wasn’t the only difference, the other difference was that you were the token representative. Arguably any other board member could miss all the meetings because their point of view was represented by multiple other people also on the board. Theoretically, your point of view was only represented by you and you were the representation for every single person living with mental illness.
Gabe: I like your reframe there that the reason that I needed to be there is because I was so incredibly valuable. But of course, when you’re on a board with 24 people and you’re the only one with lived experience of mental illness. In fairness, I do want to say that
there were a couple of other people that lived with mental illness. But I think at, even in its heyday, in the three years I was there, there was three of us that claimed some sort of peer status or consumer status, you know, living with mental illness status and 21 people who didn’t. And you are right, Lisa. It was a burden because it showed that they were expecting me to mess up in a way that they were not expecting other people to mess up. And they weren’t doing that based on Gabe Howard. They were doing that based on my diagnosis.
Lisa: Well, they were expecting you to mess up in a way that other people weren’t, but they were also expecting you to represent all people. This is actually another symptom of the exact same thing we’re talking about, where everyone with mental illness is exactly the same with no deviation. Therefore, you can just pick any random consumer and smack them on your board and poof, you’ve now represented the consumer voice. And people even say that it’s the consumer voice, as if that’s one voice, as if there aren’t multiple voices, as if we’re all singing in concert all the time.
Gabe: Wouldn’t that be great? Wouldn’t that be great if we can just, like, always get along, like, I think I’d like that.
Lisa: Dream on, Gabe. Dream on.
Gabe: Yeah, as I’m fond of saying, I don’t always agree with my wife and she’s one person who I chose to live with and marry. I don’t always agree with you, and you’re one person that I chose to be friends with. But yet across the entire state or organization that you represent, you can get one person that just happens to have the same illness. And boom, you’ve reached some sort of consensus.
Lisa: Well, and again, you are expected to maintain this standard all the time, and you have spoken several times about how that’s very difficult for you, especially online or especially when you are symptomatic and need your own support.
Gabe: You know, Lisa, I think this is a good place to pivot into another section of the pie, which is the designated spokesperson reluctantly. Again, I’m on purpose. I chose it. I have a website so people should have less sympathy for me. I brought this on myself.
But now we have the designated spokesperson, but they’re reluctant. They are living publicly. They’ve made the decision that they will allow people to know that they suffer from depression, anxiety, schizophrenia, etc. But they’re not podcasters. They’re not bloggers. And people are watching them. And they have these, as you’ve pointed out, these unrealistic expectations. It’s creeping into their careers. It’s creeping into their relationships, their family relationships. And, of course, it creeps into their social media.
Lisa: We’ll be right back after these messages.
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Gabe: And we’re back discussing being the designated spokesperson for mental illness.
Lisa: You’ve spoken many times about how it’s a burden to you to have to hide your symptoms all the time, that you can never get even the smallest amount of support. And I think everyone with mental illness can relate to that. Once you are tagged as the mentally ill one, you have to be on constant guard. If you’re at work and everyone there knows you have mental illness and you say, oh, I’m having a real bad day, everyone is instantly on guard. Oh, my goodness, what’s going on? Is something wrong? Is something wrong? Is something wrong? But if anybody else said it, you’d just be like aww. And in fact, when anyone else says that, people go, Oh, that’s too bad. I’m sorry, how are you doing? Let’s go out to lunch. And they would offer you support and love and things that would help you alleviate the bad day. But for the person who can’t ever admit to the bad day, you don’t get all that. You don’t get the support of the people around you.
So, there’s a double standard for people who are living with mental illness. They have to always be having a good day in a way that other people don’t.
Gabe: And we have to consider the ramifications of this for people with mental illness. This is where being the reluctant designated spokesperson is a problem because their best bet is to hide.
Gabe: But they have determined they don’t want to hide, but they also don’t want to be judged by it. So, they’re living openly with anxiety or depression or bipolar disorder, et cetera, meaning people are aware of it, but they really just want to be treated the same.
Gabe: And part of that is not having to hide who they are. And one of the pieces of who they are, like, for example, in my case, is somebody living with bipolar disorder. But this has real problems. If I say, look, I’m really stressed out, this deadline is not coming together. And the people hear what they want to hear and what they often want to hear is Gabe is becoming symptomatic. And then all of a sudden, management starts saying, well, what if they become symptomatic and cost us our top client? So, it is in your best interest to make sure that you hide everywhere. You make sure that nobody knows that you’re symptomatic because after all, they might think Gabe is becoming symptomatic. He’s in charge of this project. This project is with our biggest client. We need to pull Gabe off of that project and put Bob on it instead. Well, this is problematic for Gabe because there could be commission or bonus structures riding on that. I of course am not going to get the promotional opportunities if Bob gets the opportunity. And why did Bob get the opportunity? Not because he was better or even because he was originally selected, but because somebody had the wrong idea about Gabe. And the reluctant designated spokesperson is even more insidious than that. Right? Because you could just be on Facebook minding your own business and you post, oh, what a, what a really hard Monday. Uh-oh, mental health crisis is coming. We know that Gabe is prone to them. Just, you can’t even vent on social media or show a picture on social media or grieve on social media or just you can’t even be yourself on your own Facebook page for
fear that somebody will interpret the symptoms incorrectly.
Lisa: This also sets up an unfair expectation because, for example, for you, you have to always be doing well on social media. Well, but then people look at it and they’re like, oh, look, here’s someone with bipolar who never, ever, ever has symptoms. Therefore, that’s a possibility. And it’s something I should strive for. Well, that sets up an unrealistic expectation and an impossible to achieve goal.
Gabe: To stay on message, I can never have anything negative. Well, I am constantly worried about all of the people who read what I write and listen to the podcasts and on and on and on. They’re like, OK, 98% of the time I am symptom free, but two percent of the time I am symptomatic. That is amazing. Anybody listening to me, that is incredible. Just big round of applause. You have achieved the dream, but because they’re following Gabe Howard, they think 100% is possible.
Lisa: It’s an unrealistic standard. It’s just like unrealistic beauty standards.
Lisa: When you see the cover of the magazine, you think, Oh, I want to look like that. Yeah, she doesn’t look like that. That’s lots of image manipulation and Photoshop and plastic surgery.
Gabe: My recovery is Photoshopped.
Lisa: Kind of,
Gabe: Well, right.
Lisa: Well, it is not as you present it all the time; it is manipulated.
Gabe: It’s manipulated in that I only tell the good and I never tell the bad.
Lisa: Right, it’s curated.
Gabe: Well, yeah, it’s like a real estate agent, they tell you all the good things about the house,
Gabe: You know, excellent school district, great neighborhood, four bedrooms, lots of space in the backyard. They don’t tell you that it needs a new roof.
Lisa: Right, the basement floods sometimes,
Gabe: They leave those things out or at least bury them in places where they’re not as prominent.
Lisa: People actually will say to you, oh, I wish I could be like you. I wish I could be symptom free like you. By any standard whatsoever, they’re doing great, they’re doing amazing, they are slaying it with mental illness, but they compare themselves to this image that you portray and can’t measure up. That actually happens all the time. And it’s kind of frustrating because you feel like really? Really? You just believe everything you see on the Internet? Really?
Gabe: But I could lose, right, I could lose something. I could post on there that I’m not doing well. And somebody who’s thinking about inviting me to a conference could think, oh, well, Gabe’s not doing well. We can’t invite him to the conference. We were thinking about hiring him to consult, we can’t do this. Or people could panic, the podcasts aren’t going to come out on time or just who knows? It’s endless.
Lisa: It’s an unrealistic expectation, and it is to your benefit to continue to feed that expectation.
Gabe: And I don’t like that at all. I think that it is bad advocacy and it’s one of the reasons that on this show I can be much more open because I can explain it in much more detail.
That’s the problem with social media, right? You know, 260 characters, a photo and you’re out. These podcasts are 30, 45, 60 minutes long. We can delve into it and explain why we’re behaving this way or what the pros and cons of it are. But another con that I want to talk about with the reluctant designated spokesperson is because we’re faking, because we’re all pretending to be in the middle all the time, other people are watching us and they’re the newly diagnosed and they’re like, I’m never going to be that good. I can’t do it. It’s impossible. And that’s people who are newly diagnosed. Let’s go over to their friends and family, people who know somebody living with bipolar disorder. Well, why can’t they be like Gabe? Why can’t they be like Lisa? Why can’t they be like Frank? They know their loved one and their friend intimately. The good, the bad and the ugly. They only know our, as you pointed out, curated public self. But they start to compare to their loved ones’ private issues, troubles, suffering. And then they think, oh, well, my loved one’s broken or extra sick and on and on and on and on and on. This really is the literal equivalent of comparing your selfie with the cover of a magazine. About the only thing they have in common is they’re both pictures. I think it sets people up to fail because they think, well, I’ll never be able to achieve that.
Lisa: It sets people up to feel badly about themselves when they don’t have to and they shouldn’t.
Gabe: And considering that that is not the goal. Well, that’s not my goal. I can only speak for myself, but I believe that the goal of the designated spokesperson is to show that people with mental illness can live well. So, they feel bad in some ways that they’re creating this unrealistic version. But what are they supposed to do? Be symptomatic in public all the time? That’s not a good solution.
Lisa: Not being able to show symptoms makes you feel bad, which gives you more symptoms. You can see where that goes.
Gabe: But it also might cost you job opportunities, which is, you know, money, health insurance, and this is, of course, why so many people choose not to be a designated spokesperson at all, reluctantly or otherwise.
Lisa: Yeah, who needs that burden?
Gabe: They just literally completely hide, which means, of course, that suffering with mental illness, crisis with mental illness is very public and wellness and recovery with mental illness is very private. One is seen, one is unseen, creating this idea in the general public’s mind that mental illness is only crisis and that nobody can live well. This becomes very problematic.
Lisa: Because the only time people who have mental illness bring it out is when they can’t hide it anymore. And when you’re doing well, you can hide.
Gabe: Lisa, this leads me to really the last two sections of the pie, which kind of go together with me, it’s the designated spokesperson who’s not public, but they are private. There’s a world of difference, of course, between letting the public know that you live with mental illness, letting your workplace know that you live with mental illness and your family and friends knowing. And that breaks into two sections in my point. You’ve got the designated spokesperson who now, this is all private. This is all behind closed doors. This has nothing to do with your workplace. This has nothing to do with your kids’ school. This is just you probably can’t hide severe and persistent mental illness from your mom and dad or your sister or your best friend because who wants a best friend that doesn’t know that you’re managing a chronic illness? This is a form of being a designated spokesperson that I think in some ways it’s the hardest, because for a lot of these people, since they’ve chosen to hide publicly, they probably wish they could hide privately as well. But especially in the case of people who knew you when you were the sickest, the cat’s out of the bag. You can’t put it back in if you wanted to. The people knew you back when you were symptomatic and now, they know you in recovery. This would be where you and I are. Lisa, you knew me when I was in crisis and you knew me in recovery. So, we have a harder time navigating that. But there’s also people who only know me in recovery. They never saw the crisis. So, they have a very different viewpoint of me.
Lisa: Well, and it makes it difficult for people to see you any other way. I always feel like it’s kind of like how my mother is always going to see me as eight years old. She’s never going to take me seriously no matter what I do or how old I get or whatever I accomplish. She will always see me as eight years old with the pigtails.
Gabe: It reminds me of me at, what, 43 years old, running around Uncle David, Uncle David, Uncle David, let’s go play. Let’s go play. The man’s in his 60s. I’m in my 40s, but I don’t even say Uncle David. It still comes out as “UncaDavid.” Like it’s one word. But yeah, Uncle David’s always been my favorite. And that’s been the relationship that we’ve had since literally I could speak. I don’t want that to go away, but.
Lisa: The spot that you are slotted into in your family is not necessarily representative of the slot you have in the rest of the world, and it doesn’t necessarily change with time.
Gabe: And therein lies the big problem, it doesn’t necessarily change with time. In my family, I’m the only person with severe and persistent mental illness. I’m the only one that has bipolar disorder. So, my entire family is looking at me to represent what mental illness is like for the rest of the world. But more importantly, they live in constant fear that I’m going to go back to where I was. On one hand, I want to tell my mom when I’m depressed, I want to tell my mom when I’m symptomatic. I love my mom and, you know, she’ll tell me that she loves me. And if I’m there, she’ll bake me cookies. But at the same time, she’ll also worry and overreact and panic. And she’s constantly afraid. You know, I didn’t call my grandmother for a couple of days. I always call my grandmother on my way to work every morning. The reason that I didn’t call her, Lisa, is because I didn’t go to work for a couple of days. The reason I didn’t go to work is because I didn’t have anything to do. You know, COVID, it’s difficult right now. But in her mind, I was at home depressed and getting sicker. Why on earth would she jump to that conclusion?
Lisa: So even innocuous things are given much more weight than they would if people didn’t have this back story. That back story becomes more of your personality than it maybe really is these days. People who knew you when you were sick, they think that, oh, mental illness is the driving force in your life because it was at one time. And they think that hasn’t changed.
Gabe: It sort of reminds me of, like, how every single person over the age of like 60 on the planet gives you directions by mentioning closed down businesses,
Gabe: You know, turn left at the five and dime, turn left at the Kmart, turn left at Sears, turn. Like none of these businesses exist anymore. Well, go past old man Larry’s farm. There’s not a farm for a thousand miles around here. Yeah, it is. It’s on the other side of the freeway. You mean the retail corridor and the mall? That’s not a farm anymore, old man.
Lisa: People have trouble adjusting. Once they have formed this mental image of you, it’s there. They have trouble updating it with new information, and it works in reverse as well. People who know you now, who never knew you when you were very sick, they have trouble even envisioning it. Almost to the point where they don’t think it’s real. They think you must be exaggerating. That could never possibly have been that bad because they look at you now and they don’t see it.
Gabe: Well, this is where we get terms like, oh, well, he does have bipolar, but it’s high functioning bipolar. There’s no such thing as high functioning bipolar. There’s treatments, there’s doing well, there’s living well. There’s
Lisa: Well, you’re right, it’s recovery.
Gabe: Could you imagine if we had high functioning cancer? Like, how offensive would that be? Hi, I was diagnosed with cancer. But is it high functioning cancer? What the hell is high functioning cancer and how offensive would that be? Oh, I had high functioning brain surgery. You mean you had a good result to your surgery? These are all very scary physical concepts that nobody would just wave their hand and be like, oh, well, you’re high functioning.
Lisa: When someone says, oh, I’m a cancer survivor, it acknowledges the place where they are now and the place where they were. But when someone says that you’re high functioning, it erases the place where you were because obviously it was never that bad after all, or you wouldn’t now be high functioning. It’s as if there can’t be two separate things.
Gabe: And then, of course, sometimes those people butt up against each other. There is
no greater example of this than you and my wife. You saw me when I was at the worst of the worst of the worst, literally demons under the bed, very sick. You saved my life, literally. And Kendall met me after I was well within recovery. I was you know, I was working. I had a job. Everything was fantastic. And when I came up with the idea for my business, which became, you know, this podcast, among other things, I explained it the exact same way to both you and Kendall. Kendall was absolutely 100% positive I would succeed. You were 100% positive that I would fail. This is not an example of Lisa being mean and short sighted or Kendall being extra supportive. This is an example of Lisa wondering why the guy who thought demons were under the bed suddenly thinks that he’s going to be a nationwide speaker and podcaster. That just sounds grandiose, but Kendall only ever saw the positives and Lisa did see both.
Lisa: Again, once you form that mental picture of someone, it is difficult to adjust with new data. People are kind of frozen in however you’ve got them envisioned in your mind. You’re doing so well now. People don’t understand how bad it was. It really annoys me sometimes. And I’m not trying to say anything negative about Kendall, but one time we were telling some story of you being manic and out of control and she actually said, Wow, I wish I had known you back then. That sounds like such a wild time. And I thought, oh, my God, what is wrong with you? No, you do not wish that. You do not wish that you had been there back then because it was awful.
Gabe: I’ve always said that mania has the best public relations team ever. You become manic and you do all this incredible amount of damage, but of course, you don’t realize the damage until you’re depressed. And then you say, oh, my God, look what depression did.
Lisa: People who didn’t know you then don’t realize. They think that it was a fun thing or that you’re exaggerating or that, oh, it wasn’t really ever that bad. It obviously was never that bad, or you couldn’t possibly be this well now.
Gabe: The reality is, is there’s a thousand examples of this, and I think the best one that we can use is that we don’t see our parents as young. It is absolutely outside of the realm of remote possibility that my mother ever did anything wild, that my mother ever did anything crazy, that my mother ever stayed up all night, that my mother did. I’m not
insulting my mother when I say this, but my mother was wild and crazy. Sorry. Sorry, Mom, I love you very much. But I see her as such a conservative old lady, and I don’t mean that mean, I just see her as a mom. But clearly, at one point she was a high school student. She was a single mom who lived alone. She did a lot of really cool things that if I had heard about somebody else doing, I would think, oh, my God, that’s bad ass. But when I hear about my mom doing it, I think, oh, mom, that’s so embarrassing. Stop it. Because we weren’t around then. We didn’t know our parents as children. Everybody understands that. That’s sort of what it’s like here. But again, for the designated spokesperson in their own family and friend group, they’re just trying to live their life. That’s it. That’s the end. We don’t have any other greater meaning than we’re just trying to be ourselves and judged on a level playing field. And the fact that we have to explain this, debate this, or even consider the ramifications of it is just an extra layer of the illness. Everything that we’ve been talking about. Just we have to be sick and we have to worry about, what? Our legacy as a sick person?
Lisa: Our image as a sick person.
Gabe: Our image. Oh, we have to get branding specialists. It sucks.
Gabe: It sucks to live with serious and persistent mental illness. The fact that we have sort of become some sort of, I don’t know, twisted brand ambassador for the illness and that it’s become our job to instill hope. I am glad that all of us who are living any form of public, whether it’s public in our own families, public with our friends, public at work or an influencer or a podcaster or a blogger, speaker, etc. I don’t care what level you’re on, if you’re speaking about the positivity that you can get better and that living with severe and persistent mental illness isn’t as bad as we’ve heard. And you’re putting hope into the world. Thank you. But yeah. Yeah, it sucks that you have to do it.
Lisa: I know. It’s a burden.
Gabe: It’s an incredible burden, but it is where we are today. First and foremost, I think that Lisa and I both emphatically want to thank all the people who are advocating on
behalf of people living with mental illness in any way, especially while living with it on your own. And that’s, you know, so often we hear, well, I don’t have a big following. I don’t care if you got two people. I don’t care if you got one person, that makes a big difference.
Lisa: This is why we need everybody to be on board.
Gabe: Every single person. We understand, if you can’t, we really, truly do. It is a personal decision. But if you can advocate to one person that living with serious and persistent mental illness is not a death sentence, that you can live a full life, it will really move the cause forward.
Lisa: If you can be out, it helps the cause, absolutely, but it’s not a choice for everybody.
Gabe: We completely agree with that, and we don’t want to pressure people against their will, deciding whether or not to tell people that you have an illness. Lisa, I, this is such an esoteric thing, isn’t it?
Lisa: Oh, I don’t think that’s esoteric at all. That has very clear, immediate, real world consequences. In a perfect world, everybody would be able to be open and that again helps the cause. But in the real world, some people just don’t have enough privilege to do that.
Gabe: Lisa, that’s one of the things that I consider all the time. My family allows me to do that, this is not an accidental word choice. They allow it. I tell stories all the time about the things that my family has screwed up and they’re OK with it. I talk to a lot of people that want to be advocates and they can’t because their families threaten them. They threaten to disown them. They threaten to not invite them places. They say you’re telling the family business and that’s wrong. I am so fortunate not only to have a very supportive family but to have an ex-wife that agreed to start a podcast with me.
Lisa: You are so lucky.
Gabe: These things are rare, and I know that I don’t give enough credit to the people
around me for allowing me to do this job. They could stop me in my tracks. If my wife, my mom and dad, my grandma and grandpa, my brother and my sister, you, you could all force me to stop if you were so inclined. So thank you so much for letting me put my truth out into the world and try to make a difference. Thank you.
Lisa: You’re welcome. And again, if you are able to be open, there are some benefits. Once you were able to stop hiding, I hadn’t realized how much of a burden keeping this a secret was for all those years. It was so much easier once you were able to tell the people around you truthfully what was going on.
Gabe: For me personally, it made a world of difference. When I was hiding, I had to wonder, is this person my friend or are they only my friend because they don’t know that I have bipolar disorder?
Gabe: It was very difficult to wonder.
Lisa: It was much more of a burden than we realized at the time. It wasn’t until it was gone that we realized how difficult hiding had been. It was everything. You had to censor almost every word out of your mouth, and it was so stressful.
Gabe: It was. That was in the beginning when I was a reluctant designated spokesman,
Gabe: Because I had to come out to some people, like a pharmacist or my mom and dad. So, I really feel like I kind of moved through the ranks. Right. I started out as a reluctant designated spokesperson, only among my family. And then I became a reluctant designated spokesperson at work and around people that I met because I wanted to be open. And then I became a deliberate designated spokesperson and well, started a podcast. And each one of those layers had pros and cons. And that’s all I want people to understand. It’s excellent for the cause. It is excellent, excellent, excellent for the cause to have more people counted who have reached recovery. It instills hope. It
shows people that recovery is possible. It helps us get funding for the mental health safety net. It saves lives. These are important conversations. And I just want to thank every single person who is standing up and counted in whatever way, even if it is only among your own friends and family, even if it’s on an anonymous Facebook group somewhere. If you’re a peer supporter, if you work in a drop-in center, if you volunteer to lead a support group, if you go to a support group. You know how powerful it is to have people in support groups who are in recovery to show the new people? This matters so much. But the bottom line, the bottom line, Lisa, is none of us asked to be designated spokespeople. None of us asked to be diagnosed with serious, persistent mental illness, and none of us asked for any of this. So, I’m so glad that in addition to getting a disease, we get a spokesperson job. Largely unpaid. Lisa, did you have a great time?
Lisa: As always, Gabe.
Gabe: Thank you, everybody, for being here. Listen, I would be remiss if I didn’t tell you about my book, Mental Illness Is an Asshole and Other Observations. And if you go to gabehoward.com, I will sign it. I will send you stickers. And some of those stickers are Not Crazy stickers. You can also get it on Amazon, but it’s cheaper to get it from me and I can sign it. Listen up. The last thing that we need you to do is write us a review, use your words. Wherever you downloaded this podcast, give us as many stars as possible. We really appreciate everything that you do for the Not Crazy podcast.
Lisa: Make sure you keep listening for the outtake, and we’ll be back here next Tuesday.
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