Over the past few years, there has been a major shift in the ways we talk about mental health. Stories go viral about companies putting mental health first, influencers across social media post about the importance of mental self-care — but serious mental disorders, especially schizophrenia, are still being left out of the conversation.
Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard, explore where schizophrenia fits into this new wave of mental health discussions in this episode of Inside Schizophrenia.
AnnMarie Giannino, the founder of a campaign called What Would You Miss?, joins to share how she has been working to bridge the gap of bringing serious mental health issues into our everyday conversations.
What Would You Miss?
Both a simple question and, perhaps, the seeds of a movement, What Would You Miss? creates a dialogue between people who struggle with mental illness and those whose lives they touch. Respondents have offered answers like “I would miss the way my dog wakes me up in the morning by gently tapping my face with his paw,” “I would miss Christmas time,” and “I would miss seeing how compassionate and caring my kids are.”
While depression and suicide are no longer as shrouded in secrecy and shame as they were even a few years ago, the topic can feel like a minefield, especially to someone who is not formally trained to handle it. When someone you love is suffering, the prospect of approaching that person and saying the “wrong” thing can be terrifying. And, if you’re immersed in the struggle yourself, the mere act of reaching out may seem like an imposition that will only drive loved ones away. Simply asking or answering the question, “What would you miss?” connects people on both sides of the dilemma, giving them a softer way to have a difficult conversation.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.com.
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 the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast, I’m your host, Rachel Star Withers, here with my incredible co-host Gabe Howard. Over the past few years, there has been a major shift in our culture and the way we talk about mental health. Stories go viral about how companies are promoting mental health days. Influencers across social media make postings where they talk about taking care of your mental health, and usually there’s like a cutesy quote attached to it. And all of this is wonderful. But it seems that like serious mental disorders, especially schizophrenia, are still being left out of that discussion.
Gabe Howard: Rachel, you’re absolutely correct, and I think that it’s great that we’re talking about mental health. Mental health is important and everybody has mental health. And these are powerful conversations, and they’re good conversations. And I’m glad that we as a society are embracing our collective mental health. But what’s got pushed to the wayside is serious and persistent mental illness, things like schizophrenia. So, we have to understand that while we are talking more about mental health, we’re not really focusing on schizophrenia. And that’s very, very scary for me and for us, Rachel, because people with schizophrenia need a lot of understanding and support. And that part is not rising to the top.
Rachel Star Withers: Too often it seems that when people think of schizophrenia and mental health, unfortunately, they think that, well, you didn’t take care of your mental health and that’s why you have schizophrenia. That’s why you’re in this position. And those really serious topics are still being avoided. Our guest today is AnnMarie Giannino, who is the founder of a campaign called What Would You Miss? And we’re going to talk to her a little bit later in the show because she is helping to bridge that gap by talking about these serious issues.
Gabe Howard: And I do want to be clear, Rachel, that there is absolutely room for both conversations. I don’t want anybody listening to hear, Oh, you’re saying that we need to talk about mental health less and serious and persistent mental illness like schizophrenia more? No, I’m only saying that we need to talk about schizophrenia more. We can keep the level of conversation surrounding mental health just as robust and vigorous as it is. We don’t need to take from one in order to fuel the other. And all too often that becomes the conversation. Don’t fall for it. Let’s keep mental health conversations robust. Let’s just make conversations about schizophrenia just as robust.
Rachel Star Withers: Let’s start out with talking about this new wave of mental health awareness, because I do feel like it’s become really big over the past few years. Especially with the pandemic, there’s been, I feel like an even stronger kind of group of people coming forward, which is great. We have a lot of these viral stories that kind of tug at your heartstrings about a company or a boss being like, Oh yeah, it’s totally fine to take a mental health day. I’ve never had a boss like that, by the way. But Gabe, we were talking about this like just the other day, and you had a few thoughts about these viral stories.
Gabe Howard: Well, first, real quick, let’s define the story. A woman sent an email to her boss and she said, Hey, I want to take tomorrow off. I need a mental health day. I’m really, really stressed. And she justified it and the boss wrote back and said, Hey, you don’t have to justify it. You want to take a mental health day. I support that. And she was like, Oh, yay, change. And it’s a nice story and it’s a good story. And I’m glad that when she said I need a mental health day, her boss was like, OK and didn’t give pushback, et cetera. I think those are all very positive things, but let’s scratch below the surface a little bit. One, it’s her personal time off. You’re your supervisor, your authority. Your boss shouldn’t be giving you pushback for taking your time off for any reason that you give in. You could say, Hey, I want tomorrow off because I want to watch the Super Bowl. They shouldn’t write back and say, Oh no, the Super Bowl isn’t an activity that we support at this company.
Gabe Howard: That’s not what personal. Personal time off is right in the title. The second thing that I think about is, what if she would have written, I have severe schizophrenia and I’m going to need care for the next 12 weeks, so I need 12 weeks off. I need you to hold my job and I need to make sure that there’s no stigma about that, that nobody’s worried that that I’m going to come and do any of the stereotypes that we’ve discussed on this show from outward acting to yelling to screaming to violence to being unaccountable, whatever. How would that story go? Because a lot of times, even though we’ve talked on this very show about supporting your job, even though you have schizophrenia, we have to talk about it because it doesn’t go smoothly. So on one hand, very, very positive. But on the other hand, if we swap out the words a little bit, I need 10 to 12 weeks off to manage my schizophrenia. Would the conversation have gone the same way? And I’m going to guess, no, it would not have gone the same way.
Rachel Star Withers: I hear the story and the first thing I think is, OK, well, it’s your personal day. Why are you giving a reason and bringing up the mental health? Because as someone with schizophrenia that that’s not a luxury. If I bring up, hey, I need to have a personal day because I’m hallucinating out of my mind and I cannot be trusted at work today, that’s going to raise so many red flags like that’s not just a mental health day of I’m feeling a little stressed, you guys. That’s enough, I feel, to scare bosses. And I would probably if someone was asking me for advice, I’d be like, Yeah, you don’t need to give them that much info. You know, if it’s your personal day, just say, Hey, I have this day I’m taking.
Gabe Howard: Yeah, we did a whole show on this right, Rachel?
Rachel Star Withers: Yeah, yeah. Recently.
Gabe Howard: We did. Yeah. And it is an important conversation for people with schizophrenia to have.
Rachel Star Withers: Yeah.
Gabe Howard: Rachel, you know, you alluded earlier to social media and all the cutesy quotes. I don’t remember your exact words, but you have actual examples of that? Or are you just summing up all social media about mental health as light and cutesy?
Rachel Star Withers: Not all of it. Of course, there are some great influencers out there who are breaking down walls and stigma, and I follow a lot of them and we even have mutual friends, Gabe, that are these people. But then there’s also others that, you know, it’s usually like a hot girl in a bikini and then like a mental health quote, which has nothing
Gabe Howard: [Laughter]
Rachel Star Withers: To do with the hot girl in a bikini. But, you know, I googled good mental health quotes for Instagram, so one specifically to put with your pictures. And here were some of my top faves. My recovery must come first so that everything I love in life does not have to come last. Another one, You aren’t what’s happened to you. You’re how you’ve overcome it. Your illness does not define you, your strength and courage does. It’s still me, no matter my mental health. And my last favorite, self-care is how you take your power back. Now all of these are nice.
Gabe Howard: I think these all have meaning, right? They all have goodness.
Rachel Star Withers: Yes, they’re all nice. Yeah, yeah.
Gabe Howard: But do they apply to schizophrenia?
Rachel Star Withers: No, no.
Gabe Howard: That’s what I’m going to throw back to you. Do they apply to schizophrenia?
Rachel Star Withers: I mean, like on the surface, barely. If I’m a little stressed out and like, I realize, you know, hey, I haven’t slept in three days. Yeah, self-care is really important because I’m probably out of my mind. But here’s the thing, all of those, you know, and I looked up different things. They were like #mental health awareness, mental health this, mental health that, which is great. However, I want to show real-world here’s what happens. So, I have a friend text me and she’s like, Hey, Rachel, how are you doing? And I write back, Oh hey, I’m doing fine, how about you? Ignores that question, and she responds, No, I really want to know, how’s your head? And I was like, OK, you know, since you ask, I’m going to read what I wrote back, and maybe, maybe I was a little too much, OK. Honestly, I haven’t slept in two days, and I had a psychotic episode last night. I finally got some sleep today, around seven to one, but I’ve been super spacey ever since. I had some trouble counting. It feels really weird. I tripped and fell in the stairwell and laid there, staring at the ceiling for a few hours, pretty much tripping out because the ceiling looked like it was at an odd angle. I don’t know. My body feels misshapen. My tongue is too big for my mouth, and my arms are too long. Top of my head is hollow and I feel like I’ve lost the top half of my skull. So, yeah, that’s how I’ve been. And she writes back. Hmm. If people can’t take you on your worst day, they don’t deserve you on your best. Like, that’s all she responds back and a smiley face. And I wrote back. Ha ha ha ha. Worst day? Nah, this is like, you know, average. I’m actually doing pretty good. I told you I was doing fine. Um. And after that, she did respond for a few hours and then she wrote back and said, I really just don’t know how to take that, Rachel. And that’s it, that’s all I’ve heard of her for, like two weeks.
Gabe Howard: So to sum, and I’m not trying to throw your friend under the bus, I’m really, really not.
Rachel Star Withers: No, yeah, yeah.
Gabe Howard: But you did the thing that we all do because we know that this happens. We’ve seen this happen so many times where people ask us how we are and we give the generic answer
Rachel Star Withers: Yes.
Gabe Howard: Because we want to keep the peace. We want to keep our friends. We don’t want to be dramatic or any of the words
Rachel Star Withers: Exactly.
Gabe Howard: That we get used. Right. And then they’re like, No, no, no. Open up to me. So you do.
Rachel Star Withers: Mm-hmm.
Gabe Howard: And then they send you some meme or some quote or
Rachel Star Withers: Yep.
Gabe Howard: Some nonsense, and then they get uncomfortable when you’re just like, Yeah, I don’t. That’s. You didn’t engage with me. You didn’t connect with me. You didn’t learn about me. You didn’t help in any way. And then they get mad at you because you made them fearful, uncomfortable, awkward. And then they avoid you. As much as I hate to say it, for people living with serious and persistent mental illness, schizophrenia, psychosis, just the number one friend killer is honesty.
Rachel Star Withers: Mm-hmm.
Gabe Howard: It’s brutal.
Rachel Star Withers: And I really wasn’t trying to be rude. She’s the one who said, How is your head? And I’m like, Well, if you’re going to like to me, I’m like, Well, that’s the kind of a personal question.
Gabe Howard: While mental health has become easier to discuss, mental illness hasn’t. I think it’s important that we understand that, and perhaps it’s important to understand that many people use mental health and mental illness to mean the same thing, and they don’t mean the same thing. And I know that you have the definitions because you are prepared, Rachel. Can you define mental health and mental illness so that people know what we’re talking about moving forward?
Rachel Star Withers: The World Health Organization defines mental health as a state of well-being in which every individual realizes their own potential and can cope with the normal stresses of life, work productively and make a contribution to their community. That’s really broad, but and it does, it makes me feel good. That is a warm, fuzzy definition. I would say schizophrenia wise, yeah, I do most of those things. I feel like I work productively in my own way. Wink. I feel I contribute. I do not handle normal stresses very well, but I feel like I handle them Ok. But yeah, that’s a pretty broad definition. Mental illness, however, is a falling apart of everything. There’s a lot of things that aren’t considered good mental health but are not a mental illness, and those are usually called a mental health issue. So that would be like we’re talking about that kind of situational depression, stress just, you know, sometimes you just don’t feel well. Kind of like smaller issues and they could be biological factors, life experiences, even family history and just how well you like cope with things around you. The problem is that those are kind of situations that we bounce back from, right? And that’s great. And usually people when you bounce back, you’re seen as having mental resilience or like a mental strength. But mental illness, you don’t really bounce back from. So if we don’t have that resilience, what do you automatically think people with mental illness must have? They must be weak because they don’t seem to bounce back. So unfortunately, that’s kind of just even in the basic definitions. It puts anyone with the mental illness kind of like, Oh, you’re weak, you weren’t able to overcome your thing like the rest of us have.
Gabe Howard: Correct, and I don’t want to drive this into the ground, but let’s compare it to physical health. See, everybody has physical health, just like everybody has mental health. Most people have good physical health most of the time, just like most people have good mental health most of the time. So when we look at a mental health crisis that would be over on the physical health, like getting a cold, getting the flu. And it can it can go in levels, right? You can get really, really, really sick. You can be sick for months and fully recover. Then let’s look at something over on physical health that you’re going to have for the rest of your life. It’s not going to go away; you’re going to have to manage it for the rest of your life. It is just something that there is no cure for, but you’re going to work really, really hard to manage that. Physically, that would be like a severe and persistent physical health issue.
Gabe Howard: We do understand that there’s a really, really big difference between having a cold or the flu and having terminal cancer. We haven’t quite gotten there on the mental health side. People that are experiencing grief after the loss of a loved one or situational depression because of a change in life status, et cetera, they often think that they’re playing in the same ballpark for lack of a better word as people with schizophrenia. You’re on the same spectrum as us as it is a mental health issue. But again, you would never compare the flu to terminal cancer. So let’s not compare a situational mental health crisis to schizophrenia. Being very clear that just because it’s situational doesn’t mean that it’s unimportant, doesn’t mean that it’s less severe, doesn’t mean that it’s less worrisome. It’s just not the same as schizophrenia, and I feel that it’s really, really important to point that out. So again, we have more knowledge. Know better, do better.
Rachel Star Withers: With the mental illness, one of the definitions for like a broad, encompassing mental illness, not a specific one that I read that I liked, it says it’s when a mental health issue begins to take over a person’s life. At what point that they no longer can work, they can no longer hold relationships, education, social lives like they once did. It should be considered a mental illness. And I liked that. I kind of just that thought that, yes, OK, I seriously need to get some help. This isn’t something you can just bounce back from. This isn’t a Hey, I need to take a mental health day. I need to de-stress. A mental illness is, I need to go and get professional help. So I like that definition, obviously, and we’re not putting down the situational depression, you know, we’re all going to lose people in our lives, we’re all going to go through horrible, horrible things. And we’re not saying those aren’t important and traumatic events. We’re just saying that, yes, some things like bipolar, schizophrenia, they’re not the same and there is no bouncing back. It’s going to be a lifetime of learning how to manage it.
Gabe Howard: Rachel, oftentimes when we have these discussions, I think that we’re playing the suffering Olympics, and I hate that. I hate playing the suffering Olympics. If you’re experiencing a mental health crisis, let’s go with grief, for example, that’s really serious. And for somebody to come along and say, Well, you know, schizophrenia is more serious, it’s just a slap in the face. They don’t care that somebody else has it worse. They’re in the middle of a crisis that they’re trying to resolve. There’s no resolution in pointing out sicker people. But here’s the thing, the reverse is also true. When somebody has schizophrenia and the person with grief is like, Well, we’re exactly the same. We need the same resources, we need the same supports and everything. What you’re saying to the person with schizophrenia is, Hey, we’re not going to give you the resources that you need because we want to. I don’t know, be fair. I guess we want to treat everybody the same, but it’s not the same. It’s not the same at all. We have to give people the resources that they need. And what we’re seeing, like with a lot of memes, is it would work for situational depression or like grief in my example.
Rachel Star Withers: If we look back at that definition that the World Health Organization gave that was very broad, that was a very broad definition. And so it kind of makes me think so what then mental health is being able to function, right? So for instance, the idea of like my grandfather, who was 91, being able to function and then me being able to function as a 36-year-old woman, those are two different, those are two different things. I wouldn’t expect a 91-year-old man to still be getting up and working and everything. But he was very physically healthy for 91. So that idea of being able to function in society is going to differ between ages, between groups of people, societies, cultures. So mental health, the definition, it’s kind of confusing. And it’s not just me, Gabe, it’s not just me complaining.
Gabe Howard: And it’s not just you?
Rachel Star Withers: Yeah.
Gabe Howard: It’s confusing for everybody?
Rachel Star Withers: Yeah, right. Yeah, there was a study done and they were like, Hey, we’re going to get to the bottom of this, and we’re going to make a clear definition of mental health and figure out what are the core concepts of mental health. They got 50 participants with expertise in the fields of mental health from eight different countries, and they had them do these surveys and then they wanted to identify of the different definitions, which one did they feel hey, this is it? This is the one we’re going with. Do you want to know what the results are, Gabe?
Gabe Howard: I’m on the edge of my seat.
Rachel Star Withers: There was no consensus. There was absolutely no consensus on any common definition. You know, some of them said, Hey, wealth, you know, whether you’re in poverty should matter, saying, you can’t have good mental health if you’re in poverty and you’re worried about where your next meal is going to come from. Whereas countries like America, where we might not have to have to worry about that as much that didn’t even occur to us to that should be a part of it. So, yeah, it’s not just like. People here who are dealing with mental illness that kind of feel left out, we’re talking about even like, I guess like some of the smartest people of those different countries were like, Hey, this is kind of hard to figure out what exactly should mental health cover?
Gabe Howard: And we’re not agreeing on it because it’s so misunderstood. I have to say, though, sometimes this this trying to be so broad or so inclusive is problematic. I’m not sure if they did a study on what is physical health? Everybody would agree either because we try to encompass so many different concepts into our physical health that perhaps it would go running away as well.
Rachel Star Withers: Mm-hmm. And when you think about physical health, the Olympics always blows my mind where you’ll see these different like athletes and you’ll see like the runners who are like, have no fat on them, they look like disturbingly skinny, all like just bones and muscle that looks like they’re just bones and muscle. And then you’ll see, like the weight lifters, you’ll see the people who are throwing the disks. And those are, those are some hefty people, OK? They got some. They got some meat on them. All right. And you’re like, OK, I’m looking at two completely different sets of people, and I would say both of them are some of the healthiest in the world. They’re competing in the Olympics, you know, they’re the ranked the healthiest people in the entire world at the moment. But yeah, if we’re looking at them, those would be two very different ideals of what healthy is physically. And I think that with mental health right now, so many of us just think mental health is you’re happy all the time and you’re not stressed out and, I don’t know, you’re doing good. You’re happy with your life. And that, unfortunately, yeah, that doesn’t include schizophrenia, even if you’re a delightful, funny schizophrenic like me.
Gabe Howard: I think you are a delightful and funny schizophrenic and awesome.
Rachel Star Withers: Thanks. Thank you. I found a quote that I loved by Steven C. Hayes. Virtually all of our measures of psychopathy are built on the assumption that to be psychologically healthy is to be free of disordered emotional and cognitive responses. According to the standard, a coma victim might be considered the ideal of psychological health. Ok, that
Gabe Howard: Wow.
Rachel Star Withers: Makes that made me think like, Yeah, huh? Because I feel like I have schizophrenia. I’ve been dealing a lot in the past week with just nonstop hallucinations and headaches. And unfortunately, as I’ve said before on the show, when I get headaches, my hallucinations kind of make me think I have nails in my head like I actually start to feel there’s physical nails and me even just describing that out loud, I think, wow, there’s something wrong with me. That that’s scary, that that that’s a red flag, Rachel. And that’s just me, that’s me saying that to myself. And then I kind of think about that quote and be like, Yeah, at the same time, though, if my brain had no thoughts in it, that would be worrisome too. And I think it leads up to my big question with all of this, can you be considered mentally healthy if you have schizophrenia, if you have a serious, persistent mental disorder, for instance, like bipolar? Can we still be considered mentally healthy while experiencing all those things?
Gabe Howard: There are people that will say no. As sure as we are sitting here, there are people who will say no that you can never be mentally healthy. But I would like to point out, and I feel that this is important, if you have good mental health, you can have a mental health crisis and therefore be in a poor mental health state. So if you’re going to have good mental health and sometimes be in a poor mental health state, then the opposite also has to be true where you can have poor mental health but sometimes be in a good mental health state and therapy, medication, treatment, coping skills, support group is all about maximizing those good moments. So I would say that overall, somebody like us, we were not gifted in the mental health department. We have many challenges to overcome, but we can maximize our good moments and learn coping skills to continue that maximization.
Rachel Star Withers: Well, what I was thinking about that question, on paper, if you just look at my diagnoses, it is schizophrenia. And in addition to schizophrenia, I have dysthymia, which is not really a term they use anymore, but it’s still on my paperwork. But that’s long term depression. It just kind of just always hanging out with suicidal tendencies, which is a great term to have on any diagnosis. And now they’ve just added on depersonalization disorder, which I’m not thrilled about because I feel that that’s just a symptom of schizophrenia. And they’re like, No, we’re going to make it a whole separate diagnosis. And I’m like, Great, just another word to put down, but OK. So on paper, right away, I feel that I am just a big walking red flag of unhealthiness, like I just felt like, Oh, wow. No one is going to look at this and think this person can function in our society. And that’s just me on paper, that’s just a few words on a paper that scare me. And ironically, one of my past therapists actually told me that I was her most sane client. She
Gabe Howard: Ok.
Rachel Star Withers: Said she yeah, she was like, I actually loved meeting with you because I never worry about you, Rachel. But it made me feel good, though, that she said that because I just kind of thought it was funny because I was like, Really? I was pretty much doubting myself. Like in my mind, I see these horrible diagnoses and I think, Wow, I’m doing terrible. And then when she said that, it made me feel like, Oh, so I’m not doing terrible, I’m actually doing pretty good. Like, she made me feel so good about myself just telling me that one thing and I don’t know. I made me think, though, how often that I think us people with schizophrenia, people with bipolar or schizoaffective, et cetera, we automatically think we’re not healthy. We’re the ones not putting ourselves in that good mental health. We just assume we don’t because we’re so used to those big, scary words. I mean, I’m not thrilled that they put the word depersonalization. That sounds freaky to me. I did not like them doing that. But it is what it is.
Gabe Howard: First off, self stigma is a thing. We’re human, we believe many of the things about us that other people believe about us because we were conditioned by the same society that created these stereotypes in the first place, and we’re learning to undo them. When you’re beat down by an illness, especially an illness that affects reasoning and logic, it’s not. It’s not unreasonable that we ended up here. We just need to know it so that we can move past it. And one of the things that you have done extraordinarily well, Rachel, that is enviable of all people is that you have a very realistic outlook of your life. The things that you are good at, the things that you struggle with, the things that you need help with, the things that you don’t need help with. And I know that didn’t happen on day one.
Rachel Star Withers: And we’re back talking about how schizophrenia fits into overall mental health. These serious issues, though, they’re hard to bring up and just kind of like my friend earlier when I did answer her question truthfully, she didn’t know how to respond. That is something that’s lacking in our society, and that’s why we want to talk to our amazing guest because we’ve both known AnnMarie for, for quite a few years.
Gabe Howard: I think we met her at the same conference. Yeah, years.
Rachel Star Withers: I was drawn to her right away because she has such a strong personality and she’s funny and she’s so likable, like she’s just like some people are just right off the bat. They make you feel included and likable. And that’s how she was. She has come up with this campaign that focuses on suicide. And I don’t know when she first messaged me about this a few months ago, I didn’t understand it like it was almost too simple. And then I realized what she was asking and I was like, Oh, oh, that’s good.
Gabe Howard: Rachel, AnnMarie has been a huge supporter of us, this show and everything that we’ve done for years, and I’m so excited that we had the opportunity to bring her on. So without further ado, here is Rachel interviewing AnnMarie.
Rachel Star Withers: So excited to be speaking to one of my long term friends, but also the founder of What Would You Miss? AnnMarie Giannino. Thank you so much for being here on Inside Schizophrenia.
AnnMarie Giannino: Thank you, Rachel, for having me, I’m excited to chat with you.
Rachel Star Withers: Tell us a little bit about your background and then what led you to create, What Would You Miss?
AnnMarie Giannino: So I was diagnosed with breast cancer. God, it’s going to be 10 years this year, and I started blogging because my family is incredibly nosey and they needed to know my every waking move and all of a sudden other people were reading it. And I was a little shocked because I swear a lot and I used exclamation points like it’s my job and my grammar was atrocious, but mostly because I thought only my family was reading it. You know, I shared my whole story. I shared very graphic pictures, uncensored pictures, but I was always myself, and I think that really resonated with people. After my diagnosis, my doctor patted me on the back and told me, You did great seeing a year and I came home and like, freaked out. They never asked me if I wanted to talk to somebody if I needed a therapist or a support group or anything. And it really shook me a little bit because the year before my diagnosis, I hospitalized myself. I had a suicide plan and I knew the signs because I am a two time suicide survivor and I hospitalized myself and it took me a year to pull myself out of that. I’m also a recovering addict. And none of my doctors thought it was important, so I did the work myself, and that’s when I actually really started adding mental health into my advocacy with cancer. But also, I have two kids, one who lives with bipolar and one who lives with OCD and I mean debilitating OCD. And if I wasn’t honest with what was going on with me and my mental health, how could I possibly expect them to be so I dived in. I got certified to be a mentor.
AnnMarie Giannino: I did crisis training. I sit on the board of the American Foundation of Suicide Prevention. I also work for NAMI NYC and decided to share my story and everything that I have gone through. Fast forward to about three years ago now, I was in that place again. I felt myself slipping quickly, saw the signs, knew what was going to happen, and a friend of mine’s son had just died by suicide and I had casually asked her what she missed about him. And she told me, I just missed them. I just miss them. And I said, No, tell me what you really miss. I always get a little verklempt when I talk about this. But you know, she went into this, these things that she missed, she missed the way he left his cereal bowl on the counter. She missed the way he slammed the door when he left. She missed the way his hat was on backwards. She missed the atrocious music he listened to. She missed all the things that he probably found that he thought was a burden to her. And I started thinking about the things I would miss, and none of them were my kids, which I have four great kids. They weren’t my family. I have an amazing family. Was my friends like you, Rachel? It was singing in the car and wearing hoop earrings and dancing around the house while I’m cleaning. It was being loud and singing in Target because our target doesn’t play music. It was being inappropriate in elevator. I’m pretty sure I’ve been that way with you and telling jokes and whatnot. I realized those were the little things about me that gave me hope. So What Would You Miss? was created.
Rachel Star Withers: The title for your mission, it’s very simple, but I think it’s also really intense when you think about it, it’s like, Yes, if I was gone, you know, what would I miss if other people that I care about were going, what would I miss? It kind of like stabs you in the heart when you think about it. This is my point of view being someone who has struggled with depression my entire life, who just, I don’t want to say inclined, but a very large part of my brain that that thought never goes away. You know, no matter what medication I take and a lot of people like schizophrenia are like that, the thought of suicide, unfortunately, is always at the forefront of our mind, even on a good day. So I remember when you first had pointed this mission that you had started out to me. It really struck me because I don’t know. It’s very like powerful in a simple way.
AnnMarie Giannino: Honestly, what it did was open up a really difficult conversation, you know, it’s really hard for someone to say, Hey, you seem a little off, you know, are you thinking about killing yourself? Like, that’s a hard sentence to say to someone, and it’s hard for you to say, Hey, I’m in a really bad place. I need some help. I’m, you know, I have a suicide plan. Those are all really hard things to say. Powerful and should be done, but hard. What would you miss created this way that you could have a really difficult conversation with someone without really saying it. And it also validated the person. You know, Rachel, one thing you do is you send me little notes every, every now and then and little, you know, trinkets and little things very small. But I would miss that. Like, I would miss that kindness in you when you say that to someone. It validates their existence and makes them know that they’re seeing. And when you know, when you’re in that place, you think you’re a burden. You think no one cares that it wouldn’t matter if you weren’t here, but when someone tells you that, so that’s one way that what would you miss could be used is telling someone those things you would miss about them.
AnnMarie Giannino: And, you know, turn it if I were to message you and say, Hey, Rachel, you know, if I wasn’t here, I’d really miss chocolate chip cookies. That’s going to click something to you like, Hey, there’s something going on with her. Let me dove into this. And for people who lost someone to suicide, it gives them a chance to talk about that person without having to talk about how they died. Honestly, what it what it also did you know my son has struggled? I actually just found the comic book you made for him. The other day I was cleaning out a drawer, and it gave me an opportunity to be able to send him a message every now and then, just to let him know that I’m thinking about him and I miss them, even though I’m yelling at him all the time. It really took off with kids. I’ve talked to a lot of high schools and it really does resonate with them.
Rachel Star Withers: That’s really incredible, because when you think about this one of the hardest groups, I think for adults to connect with, whether they’re your kids or not, that’s just such a hard, you know, people are always like, Oh, I don’t know how to speak to my child. I don’t know how to speak to my nephew, my such and such. And they’re it’s such an intense age. Of course, that’s a major age when schizophrenia comes to light in a lot of kids, but also depression and all these other mental disorders. And then, of course, just on top of that, just normal life. What so many kids are going through that or teens that we don’t even realize they’re going through.
AnnMarie Giannino: Absolutely. Right before Thanksgiving, I spoke at the local high school about What Would You Miss? I spoke to 10 classes. I shared my story. I was very, very open. I didn’t hold anything back, the teacher said I could. They had just done the depression and the suicide unit, and they wanted to have lived experiences, which is so important. Now we’re under this stupid misconception that talking about suicide makes people want to die. That’s not true. It just isn’t. It actually helps people feel like they’re not alone. Anyways, I got about one hundred and seventy five letters
Rachel Star Withers: Wow.
AnnMarie Giannino: From the students. After I spoke, they petitioned the principal to get me to speak to the entire school. Not only do parents not know how to talk to their children, kids don’t know how to talk.They have no idea. We think that we have told our kids how to handle someone who’s struggling. We have not. They have no idea how to do it. If you ask any teen, they don’t know how to do it. And these messages that I got back were, I saw myself in you, I you opened my eyes to what my sister is going through. I have a friend who’s struggling and now I understand it better. It also, you know, about 20 kids went to the office because they had suicide
Rachel Star Withers: Wow.
AnnMarie Giannino: Plans and it really struck them. When you think about that and I’ve had people say this and I think it’s really, really important. Well, I’m dead. I wouldn’t miss anything. I get that because I’ve been in that place. And that is why I use what would you miss every single day I wake up in the morning, I think of three things I would miss. I go to bed at night. I think of three things I would miss and I write them down. So when I’m having those hard times, I can go back and look at that list and remind myself of all those things that I did miss. However, when you really think about it, there’s always something that you would miss. And I think when you when people first hear it, they want to go to their job, their family, their blah blah blah. That’s not what I’m talking about. It’s going to kick boxing or it’s, you know, making chocolate chip cookies, whatever it is that makes you uniquely who you are.
Rachel Star Withers: On our episode today, what we’ve been discussing is how there’s this big push in our society, you know, in the past few years about mental health, which is amazing and great. There’s so many wonderful mental health apps and stuff. However, when it comes to the bigger issues, for instance, serious mental disorders like schizophrenia, all of that stuff kind of it can’t touch it. It’s like people get scared. Still, even though it’s like they could talk for hours about how important mental health is and breathing exercises and meditation. The minute you bring up schizophrenia or other serious issues, people back up and it’s like, Well, I don’t know how to deal with that. And I feel that that’s where the talks about suicide also fall is that our society is able to on one, on one hand, be so pro mental health and on the other hand, also not.
AnnMarie Giannino: You know, one thing I always say to kids is you need to get angry. I’m old, you know, and wants to listen to me. And you kids make things go viral. You kids need to make the change. So I think the more we bring this to the forefront of kids, having people come into the schools give it lived experience, not a lecture, a lived experience. Talk raw. Talk openly. They these kids want to change. They’re sick of COVID. They’re sick of everything and they want something new. And I think if we could have them understand that mental health is not trendy and that there’s real struggles there, but there are solutions and there is help, they can be the change that we need.
Rachel Star Withers: So, if there was a parent out there listening right now who listening to this podcast worried about a younger loved one who might be experiencing isolation, things like that, whether it’s toward suicide, whether it’s just for a mental disorder in general. What advice do you have for what they can do to reach out to that younger person in their life?
AnnMarie Giannino: Using What Would You Miss? has changed a lot of parents’ perspective and I want to share a story. I had this mother messaged me and she had followed What Would You Miss? through a mutual friend. We live in the same community. And her son has always struggled and she has some anxiety, but nothing serious, nothing severe. And actually, he is schizoaffective disorder. I believe that’s his diagnosis now. But he has. He’s a he’s a self harmer, and she notices the signs, but she was scared to do anything. What would you miss? Comes across her feed on social media. And one day he’s sitting at the table eating his breakfast EarPods in a hat down, slapping it up, and she looked at him and she said, You know, I would really miss you playing that rap music.
AnnMarie Giannino: I can’t stand it, but I still would miss it, pulsating the house I would miss. And she goes into this whole list of things, and it’s you not taking the trash out me yelling at you to take the trash out. It was a list of things that she screams at him about OK, he messages her from school that day and says, Mom, I need you to come and get me. I was planning on killing myself this weekend. She’s a single mom. And he said, I felt like I’ve been a burden to you and that I’m too much work and you have to work two jobs to get. I mean, I have goose bumps all over my body. They went, they got him the help he needed. It’s taking that step. She didn’t go to him and say, OK, are you going to do something? Because, you know, that’s uncomfortable. She told him everything that he needed to hear telling you. When I talked to students, I always tell that story because I say, How many of you kids got yelled at this morning for running late? How many of you guys forgot your homework? How many? I said, your parents would miss every bit of that if you weren’t here. You think they wouldn’t? One hundred percent they would. This mother is living proof that it happens. So I really think having this, having hard conversations can be done in a very easy way. But you just have to know your resources and how to and how to approach it.
Rachel Star Withers: I love that. I love the simplicity, honestly of the entire thing, and I don’t know, it connects even where we’re talking about people our age to older or younger, like it’s a very connectable, very simple idea.
AnnMarie Giannino: It can be funny or serious, like you don’t have to
Rachel Star Withers: Yes.
AnnMarie Giannino: Like, go deep down with it, I mean, my kids will sometimes send me a text and be like, I miss the way you burnt the toast this morning, like as a joke. But the point is that they’re validating that they that they see me. And you know, the other part to it is Rachel. I think that’s hard for parents is admitting that you’re going through something yourself. When I first came out with everything, I was really scared. My kids were going to look at me like a bad mother. They didn’t know that I had hospitalized myself. They thought that mommy went away. I’m sure they knew deep down what was going on. You know, their mother had just been through cancer, too, and now I’m coming out with all this mental health stuff. However, they found it so. I don’t want to use the word empowering, because that’s such a, you know, word, but I think they found it comforting because then they, as I shared it, their friends all started opening up and they saw what it could do just such a little sentence. So I think for parents out there, one advice is be honest with them. Let them know that you’ve gone through things too, because you know, kids think that parents think we’re perfect. They do. That’s what kids think. We’re not. And we need to let them know that we have gone through things.
AnnMarie Giannino: I’m going to give you one more story, because I think it’s really important in this scenario. I had a message when I first started, what would you miss from this person? His name is Nathan. He is a head recruiter for a company. Beautiful penthouse apartment. Gorgeous guy, dresses impeccably, ladies’ man, high bachelor. His family goes in for everything because he’s financially solid. He, you know, he’s got it all together. He has got his stuff together and he messages me and says, I saw, What would you miss? Come into my feed? And I thought it was the stupidest thing I’ve ever seen. There’s nothing I would miss. I have a great job. I have a great family. I could care less about. Any of it means nothing to me. And wit was a Friday. He gets up, goes downstairs, goes to get his coffee at the bodega that he normally gets it at, gets his coffee chit, chats with a guy who runs it like they always do. They tell a couple of jokes, Blah blah blah gets on his way, gets on the subway, sits down, puts the coffee to his mouth, takes his first sip because it’s finally cool enough and starts crying because he realized he missed that first cup of coffee. That first cup of coffee he would miss so very, very much. He starts sobbing.
AnnMarie Giannino: Some young kid next to him looks at him because you OK, bro. He makes them cry even harder because no one asks him if he’s OK. Gets to work, goes to his boss and says, I’m going to finish this project and then I need to take time. I need to. I need a couple of weeks off of work as bosses shocked what’s going on. He said, I’m I have a suicide plan. I plan on killing myself this weekend, but I’m not going to do it. I want to get I want to get help. He gets the help he needs. He gets the diagnosis that he needs, which he has been living with bipolar never knew it. The point is, there’s always something that you would miss. Ask people what they would miss. Ask them. Ask Rachel what she would miss. Ask and tell other people what you would miss about them because you never know what that person is going through. Nathan had it all together. His family had no idea what was going on. I always worry. I always think about this. We go through with kids and it’s all over social media. Here’s the warning signs for suicidal ideation. Here’s the warning signs for schizophrenia is a word. Does anyone ever talk about the things that aren’t warning signs? Because when you don’t have a warning sign, that’s the most lethal. We have to ask; tell people you would miss them. Ask people questions.
Rachel Star Withers: Just kind of like I was asking you, there’s so many people, I’m sure, listening to you thinking, Oh, well, she’s so strong. Same thing. I’m sure they’re looking at Nathan, like, well, he has his life together.
AnnMarie Giannino: Exactly.
Rachel Star Withers: Look. Yeah. Eligible Bachelor. I’m sure we have a lot of emails and calls asking
AnnMarie Giannino: I know.
Rachel Star Withers: For more about that info.
AnnMarie Giannino: [Laughter]
Rachel Star Withers: That’s absolutely incredible. Tell us, AnnMarie, how can our listeners find out more about What Would You Miss?
AnnMarie Giannino: On the internets, WhatWouldYouMiss.com. You can find me on Instagram, Twitter a little bit. Facebook, of course, YouTube, you know, a lot of the videos that I’ve done are on YouTube. Check it out.
Rachel Star Withers: I love that. Well, thank you so much for being with us here today, sharing your mission, sharing your life with us and all of these great tips. And I know there’s definitely a lot of people out there, whether they’re parents or just I don’t want to say desolate like me, but desolate like me, who I know have definitely taken a lot from this. Thank you so much, Ann.
AnnMarie Giannino: It was so great to talk to you, Rachel.
Gabe Howard: Rache, as I say in every single episode and as I am sure you know, great job with the interview and I have to ask before the interview, you mentioned that suicidal tendencies was one of your diagnoses. And you and AnnMarie had a frank and honest conversation about suicide. And it makes me wonder, Rachel, what would you miss?
Rachel Star Withers: A simple thing, I love sub sandwiches. I’m southern, Gabe, so the sweet tea matters. So I go to restaurants, there’s like a handful that have like the perfect sweet tea and the perfect roast beef sub sandwich. And it’s like heaven. But I treated myself the other day to one of my sweet teas and roast beef sub sandwiches, and I always go alone and I just pretty much chill and enjoy that. And it’s just like a really silly thing, but it’s my time, and I love that. And that would be something very simple and not life changing that, yeah, I would miss. I would miss going and doing that. I usually do it about once or twice a month.
Gabe Howard: It’s fascinating, as I listen to you talk, because I think I would miss the exact same thing, except mine with Diet Coke and it’s daily.
Rachel Star Withers: [Laughter]
Gabe Howard: Usually two or three times a day.
Rachel Star Withers: [Laughter]
Gabe Howard: I really like Diet Coke. I would miss that, sincerely. And I feel bad because I probably should say like my wife.
Rachel Star Withers: Well, I was trying to keep it simple. You know, I could say my parents and different things, but that was one thing I liked when we interviewed her is she mentioned the guy who said he would miss his morning coffee, how much he enjoyed going and getting that coffee. And that’s like a simple thing. Obviously, he could live without that, but that is, you know, just something small and just a small happiness. And I kind of think that’s what’s important when we’re talking about these big issues is to look at the small things that connect us. You know, Gabe, if you would’ve just said, you know, oh, your wife and how great she is. I’m not married. I mean, I would be like, Oh, that’s sweet, Gabe. Ok, but I have no connection whatsoever to that. When you if you were to say that. And just like if I were to say my parents, there’s so many people out there who don’t have a great relationship with both of their parents who, when I said that would probably be like, Oh, that’s sweet, good for her. That’s just that’s just great. She has that in her life. But when even though I don’t drink coffee and she brought that up in my head, I went mentally to me getting my sub sandwiches, me getting like a really good cup of sweet tea, the kind that like kind of shocks your system it’s so sweet.
Rachel Star Withers: If you’re not southern, I know you can’t understand, but whoo. You have to brew it. There’s a lot of like silly pleasures that I would miss. I just got my dog a new squeak toy. It is the loudest squeak toy I’ve ever heard in my life. And for some reason, I find it hilarious when my mom and dad are like trying to watch a movie and he’s just sitting there, squeak, squeak, squeak. Just like going nonstop and they’re just like, Rachel, why did you do this? And I don’t know why. It’s just like a cute annoyance that I love. I love to give him squeak toys just because I know what’s going to drive everyone in the house crazy with the exception of me. It doesn’t bother me, and I just find it hilarious. I would miss
Gabe Howard: I.
Rachel Star Withers: Annoying my parents in that small way.
Gabe Howard: Rachel, in the entire time that we have worked together, I’ve always found you courteous and accommodating and reasonable, and you just told this story and I’m like, that doesn’t sound like Rachel at all. Rachel is always kind and caring
Rachel Star Withers: [Laughter]
Gabe Howard: But apparently you are a bad roommate. I don’t, that’s, that’s all I can. Do your parents know you do this because they’re going to now.
Rachel Star Withers: Oh, they know, and they won’t take the little squeak toy from him because he’s so happy, he’s swinging it all over. He’s just happy, you know, he’s like, you can’t take away this happiness. But meanwhile, I’m like at the store squeaking them all, like figuring out which one’s the loudest.
Gabe Howard: [Laughter]
Rachel Star Withers: But those are simple, silly things that us talking about that, Gabe, we’re laughing about suicide and not making fun of it. We’re not making some kind of cruel joke. We’re laughing, though, and having a serious conversation about suicide. And that is really, really powerful. Especially if you’re a loved one out there who never knows how to deal with this kind of stuff. That right there is such a great way to open the door. I love the simplicity of it. It’s something that you don’t have to be like, Hey, we need to sit down and have a talk. This is, you know, we have to have a serious. Oh gosh, let me go and print out some worksheets in case they ask me questions or something, you know, let me. I need to do like an intervention like this is just, hey, we’re chilling, and I could easily bring this up and talk to somebody. And, Gabe, I’ve been racking my head, and I’ve been trying to think of a way like a simple way of bringing up schizophrenia like that or the symptoms of schizophrenia. And I’m still racking my head. So especially if we have any listeners who come up with the simple question I would love, love for you to message that to me. Because I’ve been trying to think like, what’s along those lines, a way of asking someone who’s dealing with mental stuff like we go through, Gabe? I don’t know a way of being able to talk about it without that pressure, without that, oh no, they’re going to say something I’m not prepared for.
Gabe Howard: I’m with you, Rachel, and I have found like you that talking about the things surrounding it, things like advocacy and things like fundraising and humor. People discount humor. The number of messages that I get saying, Well, you shouldn’t joke about that. It’s serious. One, I agree. It’s one hundred percent serious. I’m not sure about the first part there about not joking about it. I think that all conversations are good because they get it out in the open and they take its power away and its fear away and its stigma away, Rachel, where do we go from here? I think that we’ve really educated people on the differences between mental health and mental illness, and hopefully we’re able to help bring schizophrenia out of the shadows because it’s so beneficial for our community. What are our next steps or any steps for our listeners?
Rachel Star Withers: For me, it comes back to that question, can you be mentally healthy if you have schizophrenia? And society is going to tell us no. Schizophrenia is the opposite of having good mental health to most people. I would even say to a lot of people who work in mental health. The problem is that that means people with schizophrenia are defective and sick. That’s basically what that leads us to believe. And unfortunately, a lot of times, like I did earlier, we’re the ones telling ourselves that we’re the ones that are making ourselves feel left out of the discussion. You know, even if I do everything right, I take my meds, I manage my symptoms. I speak up when I need help. You know, I’m still going to be considered mentally ill like that. That’s unfortunately a label that’s stuck on me that seems to contradict mental health. However, Gabe, when I think of people like you who actively manages his bipolar, when I think of a lot of our shared friends who have serious mental disorders and they’re always finding new ways to deal with their symptoms, whether it’s art, whether it’s music, whether it’s just like through a job through, it’s like going out of their way to help other people. I think of the fact that I meet with my therapist every two weeks. I have a psychiatrist I meet with monthly and then I have apps on my phone that I track my symptoms and I think of all those things. And I think, how is that not being on top of your mental health? How is that not like the definition of great mental health doing all of those things? And if someone were to come up to you, Gabe, and they were like, Hey, I count my calories every day. I have a personal trainer; I have a nutritionist. I exercise every day, I do cardio, I do weightlifting. You’re probably going to be like, Wow, that person must be like, so physically healthy. Like, you’re just going to assume if they do all those things, they’re physically healthy, right?
Gabe Howard: Yeah.
Rachel Star Withers: But mentally, we think the opposite. It’s like, wow, they’re tracking all their symptoms? Wow, they have to meet with those professionals? They’re obviously not mentally healthy. But we are.
Gabe Howard: Right.
Rachel Star Withers: Yeah, to me, I think, can you be a mentally healthy person and have schizophrenia, bipolar, schizoaffective, et cetera, et cetera? To me, I say absolutely. And I think a lot of us who have these disorders, we need to kind of change our own mindset and be like, Hey, no, I am managing amazingly way better than most of the people around me. How many, quote unquote normal people track their mental health symptoms every day? I honestly don’t know anyone outside of our community who does that. That’s just not a thing. I think if we sit down and think about it like you might surprise yourself. And to the loved ones out there, it would probably really help the people with schizophrenia in your lives if you brought that up to them, if you like kind of was like, Hey, I’m really impressed that you’re able to manage like this, that you’re able to deal with hallucinations and delusions and you still go out of your way to track them. You still go out of your way to meet with your therapist. That’s really amazing. The same way that I would probably if I had someone in my life who was trying to lose weight and I was like, Dang, we’re at the end of January and you have still been going to the gym every day like I would probably compliment them.
Rachel Star Withers: Compliment the people in your life who are dealing with schizophrenia and stuff, and they’re doing the same thing. They’re reaching those goals and they are managing and they are working their best to take care of themselves. And I really think like that little bit of support like that is the way to like, really promote mental health and like, destigmatize it. Thank you so much for listening to this episode of Inside Schizophrenia. Please, like, share and subscribe and rate our podcast, and we’ll see you next time here on Inside Schizophrenia, a Healthline Media podcast.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at PsychCentral.com/IS or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.