Not Like the Others: Katie's Story of Mental Illness and Recovery (Ep. 28)

Guest: Katie Sanford , blogger, "Not Like the Others"

“You raise expectations, and raised expectations are what people need.” - Mindy

From Katie's blog:

"Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free. "

Katie Sanford is a blogger and advocate living with schizoaffective disorder who uses her insights and experiences to  promote a deeper understanding of schizophrenia-spectrum disorders. She details her experiences on her blog, Not Like The Others, and is also an ambassador for NAMI Chicago involved with Crisis Intervention Training. She has been a guest speaker for college classes, webinars, and podcasts, and her story has been featured on platforms like Women's Health Online.

Questions:

Tell us Your Story!

How does schizoaffective disorder impact you at work?

How does it impact your relationships?

Is an outcome like yours possible for everyone?

And why do you think it's important for people to hear from individuals with lived experience?

What role has family played for you in your recovery? - support, treatment, early diagnosis

Advice for practitioners? - Believe your  patients more

From article she wrote for The Mighty: 

“Receiving a mental health diagnosis isn’t the end of your life, it’s just the beginning of a new chapter. But it may be daunting or terrifying. When I was diagnosed with schizoaffective disorder, I had no idea what my future would look like...While my mind went spinning into denial, fear and acceptance that life as I knew it was over, a part of me clung to hope and refused to give up.

Hope wasn’t enough to solve all my problems.”

Links:

https://katiesanford.net/wp/

https://themighty.com/

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_03 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy K. We are so excited tonight. This is episode 28, and it's another story that I know you're going to want to hear. We call this, because Katie calls it this, not like the others. That's the name of her blog. And it's Katie's story of mental illness and recovery. So welcome to episode 28. We really like to hear stories other than our own sons' stories. And in our past episodes, and if you haven't listened to this, please go ahead and listen to Eric's story and Rebecca's story and Carson's story. We need hope. And we also like to hear from people who've gone through what our sons have gone through. So our guest tonight is Katie Sanford. I'm going to bring her in in a second. Let me just start with a couple of things for us to get to know her. She's a blogger. She's an advocate living with schizoaffective disorder. And she uses her insights and experiences to promote a deeper understanding of the schizophrenia spectrum disorders. Her blog is not like the others. She's an ambassador for NAMI Chicago, and she's involved with crisis intervention team training, which is something we've also done an episode on. She's been a guest speaker for college classes and webinars. And her story has been featured in a lot of places, like Women's Health Online, and she writes for the mighty. And without further ado, let's bring her on, Katie Sanford.

unknown 1:45

Yay.

SPEAKER_03 1:46

Welcome, welcome. Hi. Welcome so much. We basically want to hear your story and ask you questions. But in case you don't know us, we're each going to get 60 seconds to describe who we are so that you have an idea who you're talking to. I know you've listened to a couple of episodes. So Mimi, unless you're too out of breath from being stuck in traffic, why don't you start 60 seconds of who you are and how your son is today?

SPEAKER_02 2:14

Well, um, right now, Nick's good. Uh, no big changes to report. I'm a painter, an artist, and a writer. I wrote a book about my experience as Nick's mom and what our family went through. And I have three daughters and an adult son, Nick, who's 35 and has schizophrenia. And um I do this and I talk and I advocate and I do everything I can to help other moms. Look at you with the book.

unknown 2:45

Yeah.

SPEAKER_02 2:46

Other other moms, you know, we we try and reach in that direction a lot, but just in general, changing the world as far as mental health and mental illness is concerned. So welcome. Happy to have you here.

SPEAKER_04 2:59

Mindy, I'll hold your book up while you talk. Okay, welcome, Katie. Yes, we've all written books. We're mom authors, and we all have sons. And my son has schizoaffective disorder as well. And he's been um diagnosed about 20 years ago. So we've had ups and downs, and I love to hear success stories because they give us all hope. So I'm looking forward to talking with you. Um, I'm a former state legislator for 20 years and was on the state and national NAMI board. So I'm glad to hear your involvement with NAMI Chicago. I just think it's the best organization because people with mental illnesses and families working together, I think is the strongest coalition. So I can't wait to hear from you.

SPEAKER_03 3:45

Okay, and I'm Randy, and this is my book, Ben Behind His Voices. My son, who I call Ben, for these purposes, is uh approaching 40 in six months, 39 and a half, and he has schizophrenia, though he does not think he does. And we've been through a lot since my book came out. He spent seven years in a group home and then had a relapse and then spent nine years living with us and really stayed stable and got to full-time employment, and then everything crashed in COVID, and he went back in the hospital for five and a half months, and now he is back out. He is in a group home again and a much better one, in my opinion, a really caring staff. And he's struggling with um marijuana and not using it. So there's that, but he's working hard at his own recovery from that. And at the moment, we're in a good place. So that's where we are. Can we start by just having you tell us your I know you've spoken many times about your story, so tell us about you. Tell us about your story.

SPEAKER_00 4:55

So I am um originally from Sonoma County in Northern California. So I grew up in Wyang Country. Um, and it was uh a really small town. I'm from Healdsburg specifically. Um, and I just had, you know, pretty normal childhood. My parents divorced when I was young, but it was amicable. There wasn't any bad blood or anything like that. Um, but I did struggle with depression and what was later diagnosed as obsessive compulsive disorder from a very young age. I remember having like before teenage, just so we can okay. Yeah. I remember having my first suicidal thoughts in elementary school. Um and so the whole, you know, at that age, I I didn't really know anything about mental illness. So I just thought it was it was me. Like these were personality flaws that I, you know, was depressed all the time and you know, thought no one liked me and had all these thoughts and that this was a problem with me. And so I didn't really talk about it because I thought that, you know, the depression made me think that if I did, then everyone was gonna laugh at me, I that I was being too, you know, high maintenance or being dramatic and things like that. Um, and and so I kept it quiet. And then when I did get to high school um and I learned more about mental illness, and I took a psychology class and I knew all of the um diagnostic criteria for obsessive compulsive disorder and depression, and also knowing that both were in my family, I still thought it was me. I thought, because it had been so long, and I actually wished that I had depression so that there would be a reason for the way that I felt and to know that there was treatment, but I I I did. I just thought it was all me and I struggled with suicidal thoughts. I went through periods of self-harm. Um, and I really only ever told a handful of people, just friends, and I never saw anyone for it.

SPEAKER_03 6:50

Did your parents not know? Did your, I mean, I know that you said they were divorced. Do you lived with who? I lived with my mom during the week and my dad on the weekends. Okay, and they they did not know where you can I ask what kind of self-harm you were doing, or I would cut myself. Okay, and and you hid that.

SPEAKER_00 7:09

Yeah, I uh hide it. Okay, chose a place that I don't talk about because I I told three people and they all went on to do it. Um, but somewhere you couldn't see. Um, and so it was pretty easy to hide from everybody. Um, and I never had a suicide attempt, so that never really came to light either. Um, but uh my mom in my junior year of high school had a cardiac event. Um, and so I took her to the emergency room. She was in the hospital for a bit, and then she was on bed rest for a while. And so I was kind of running the house because you know, my dad lives in a different town and you know wasn't really a part of that part of my life. And my brother was away at college. So it really was just me, my mom, and our dog who had had a medical issue with his tail. So I had to take care of that at the same time. And even though my mom did probably more than she should have on bed rest, it kind of felt like I was holding everything together. And so then in June, I believe it was June, she went back to work full time. And it was like everything just kind of came undone. I sank into a really deep depression. Instead of feeling relieved, it kind of went backwards instead. And the depression just kind of changed. It was, it was different than I'd ever had before because I wasn't harming myself. I wasn't having suicidal thoughts or or anything like that. I didn't feel hopeless even or, you know, sad. I just felt nothing, just absolutely nothing. And it wasn't that I didn't um enjoy things. I had a part-time job. I worked at a fair trade store that I loved. And so, you know, going to work was fine. I enjoyed it while I was there, but I wasn't seeking out anything else. If my friends made plans, we'd do something and I'd have fun. But otherwise, I just kind of sat around the house and it felt just difficult even to get up, like physically. And um, it reached a point where I was sleeping about two hours a night. I was not eating much. And um, what really kind of pushed me into getting help was that I knew I wouldn't be able to hide it anymore because it was getting to the point where I was going to be missing work, or I was going to be missing those events with my friends and things like that. Um, because I just couldn't do it anymore. And that was my biggest fear, people knowing that there's you know something wrong with me.

SPEAKER_03 9:32

Were you hallucinating or anything at this point? Right now, so right now we're having sort of mood disorder, depression, maybe someania in there. Okay, just trying to, and you're about 17 or 18 at this point? 17. High school, okay. Yeah.

SPEAKER_00 9:46

And so I asked my mom if I could see a therapist, and my family is very supportive of that. Um, and so I was able to see someone quickly, and the symptoms kept unraveling very quickly. After that, I started seeing a psychiatrist who gave me uh medication to help me sleep, and then also for depression and anxiety, and then I started to hear sounds. And it started with um, I was in my room one day, just getting ready for the day. And from the back corner of the room, I heard a man laugh at me, and I was home alone, no TV on, no music, no explanation. And I panicked and I called my doctor, and then it happened again with the sound of a guitar being strummed just once. And again, called my doctor, panicked, same situation, and it kind of picked up steam a little bit. I would hear footsteps up and down the hall at night. I had some weird obsessions with things that would keep me awake, like the idea of breaking a mirror. I had a hand mirror, and I just became so fixated on breaking it for some reason. And um, ultimately the next morning I did, and I didn't, you know, use the pieces to hurt myself or anything, but I completely panicked because I had no idea why I did it in the first place. Um, but it was about the time that I was pet sitting that summer, it was August, and I was just so exhausted and so tired of all of these doctors' visits and medications and therapy. And so I was just trying to kind of decompress since I was over at this house where I was pet sitting, lying on the couch, watching TV with the dogs. And I had my arm hanging off the edge of the couch and I felt a cat sniff the back of my hand. And without looking, I kind of reached out to pet it and I could feel it back away. And we went back and forth a few times before I remembered that they don't have a cat.

SPEAKER_04 11:47

Oh wow. And I kind of scared you to death. You must have been scared to death, actually.

SPEAKER_00 11:55

Yeah, it it was terrifying, especially I mean, something so innocent too. It wasn't like it was um, you know, anything terribly threatening. It was, you know, cat wanting to say hi. And then um a few days later, I was crawling under a desk at home to turn off a power strip, and there she was, about two and a half foot tall, fluffy gray cat with pale eyes. And she just blinked slowly at me. And a part of me felt so comforted. I felt like maybe everything is gonna be okay. And then the other part of me panicked to call my doctor.

SPEAKER_04 12:30

Um I'm just amazed that you're getting a hold of your doctor so quickly. So was this a person that knew you ahead of time or just a fantastic doctor?

SPEAKER_00 12:40

She was just very good about um responding quickly. She was very um sensitive to emergencies um and things of that nature. She was always, you know, she didn't pick up right away. You'd hear back from her within 24 hours and be in her office pretty quickly after that. That's fantastic.

SPEAKER_02 12:59

Now you called her two or three times with these hallucinations or auditory hallucinations. What would she say when you called her?

SPEAKER_00 13:08

Her tone became a bit more hesitant. Um, what I later realized is she was working through the stages of okay, it's not just depression, is it depression with psychotic features? And then when I saw the cat and had actual visual hallucination, that was when her language started to change. And suddenly she's talking about it and the different ways you can approach it and treatment methods for it. And I was sitting on the couch with my mom and we finally asked what is it? And she said it's looking to be schizophrenia.

SPEAKER_03 13:43

Wow. And your anything about it. Did you believe it? Did you believe it?

SPEAKER_00 13:49

It was interesting because it didn't really in the office itself, I felt validated. Like I felt like this, you know, this makes sense. This is something that, you know, makes sense. So I I actually felt not better, but okay. And uh I knew a little bit about schizophrenia. I have an uncle on my mom's side who has schizophrenia. Um, so it it made me feel better in the sense that I knew that there was treatment for it. And this wasn't just character flaw. This wasn't just me being dramatic. This is real, this is something that I can do something about. But when I got in the car on the way home, I just fell apart because then the rest of me recognized that my uncle has spent his entire life in hospitals and group homes. And what did that mean for me? Because at that point in time, I had everything going for me. I was, you know, top of the class without even trying, highest scores on all the tests and things like that. I was a record-setting athlete. And I took it all for granted. And now I was sitting here thinking, what is gonna happen to all of that? I mean, am I gonna, you know, go to college? Am I gonna have a career? Am I even gonna make it through my senior year of high school, which was about two weeks away from that day? Um and I remember um the one thing that my mom remembers that I said was that I was not going to let this define me. And I think the part that was a little bit of denial of thinking that if I could just act like nothing happened, then it would all magically go away. Um, but the other part was a lot of stubbornness of thinking this is not what I wanted my life to be. This is not what's going to happen.

SPEAKER_03 15:25

So, what did you do at that? I mean, two weeks left of high school. Two weeks before my senior year. Right. Two weeks, you have two weeks left, right? Did you take medication willingly? Did you resist it? What you know, each of us have had sons that have had resistance to treatment, which is often a symptom of schizophrenia and a signosia. We did an episode on that last week. And I do remember hearing that girls are more willing to accept it than boys. I don't know. But so did you have a process to get from oh my god, is this true? Oh, it can't be true. Never mind, I'll be fine. Like, how did you get to the point of like, all right, if I need treatment, I'll take treatment? Or did you get to that point? I'm just assuming.

SPEAKER_00 16:18

Yeah. It was there was a divide for me. I was willing to accept treatment that no one would know about. I took my medication religiously because I did know enough. I had that knowledge. Um, there's just health problems in my family. So I know you have to take your medication on time, you have to take it regularly in order for it to work. So I had the knowledge there that kind of backed up the power of medication and the reasoning of, you know, why I should take it as instructed. Um, but anything else I was totally against. They gave me the option to choose whether or not I went to a hospital. And I said, no, no way. No one's gonna find out about this. You know, no one can know that there's, you know, this thing wrong with me, kind of that I have such a stigmatized illness. And um, so then they shifted to, well, do you want to go on home hospital, which is type of independent study for um kids with mental health and and healthcare concerns? And again, no, absolutely not have, you know, not show up to school and have all of these people know that, you know, there's something horribly wrong. And so um, so it really, it really was about appearances for me. I knew that if I took my medication, I at least hoped that I could continue to function as I was. Um, but I was totally unwilling to do anything that would be visible to other people.

SPEAKER_04 17:38

Could I ask, um, you know, all of our sons had involvement with drugs, and Randy mentioned marijuana that her son still struggles with. And that was something we just found out a couple weeks ago that I thought we were free of. And here our son is struggling with that again as well. I'm sorry. Were you using any kind of drugs? Because we know that accelerates this illness.

SPEAKER_00 18:00

I was not. I was a little bit of a black sheep, especially in my county of California. Um, I had an impressive contact high once from a concert, but I have never, to this day, I still never smoked marijuana. I've never done any kind of illicit drug. Anytime that I had prescription painkillers, it was for a valid reason, and I usually didn't take them anyway.

SPEAKER_04 18:24

You can thank yourself for that because I think that made all of our sons worse for you.

SPEAKER_03 18:30

I mean, we're actually with 20 minutes into this, and I I want to make sure we get to where you are today and uh you know, how your story, what you're doing to help other people. So, can you summarize? How old are you now, Katie? I'm 30. Oh, you're 30. So good 12 years has gone by. Did it ever get worse than seeing a cat? Or did you just pretty much go, okay, I'm gonna be in treatment and I'm gonna be okay? I mean, is that did you relapse at all? And and where are you now and how did you get there? All in like five minutes.

SPEAKER_00 19:04

So I did graduate. Um, I struggled a lot. The cognitive issues were very severe. It was a huge blow to my pride to drop so much in ranking and things. Um, but I did go, I was accepted to Northwestern University. And against the advice of everyone who said I should take a gap year, I went. Um, and I had two um very serious episodes while I was there. So I would go through periods where I didn't have, I mean, like I still had the cognitive symptoms, disorganized symptoms were always there, but I wasn't hallucinating regularly. And then for about a year in my sophomore, about the entire length of my sophomore year and the entire length of my senior year were very severe episodes of seeing shadowy figures falling me across campus, peering in my windows. There was a man standing at the end of my bed. I would hear voices in my head, not like stereotypical type voices, but just saying random things that was very distracting. It was kind of like turning the knob on a radio a little bit, um, just hearing snippets of things. Um, and the cat came back pretty regularly and was that comforting presence for me. Um, but it was not all sunshine and rainbows at all. And what I've actually just realized recently, um I am kind of coming to an end of a rough period right here myself as well. Um, I spent a lot of time asking, why am I having symptoms now? Good things are happening in my life. I have a job where I'm very supported that I like, I have support for my family. I've got my boyfriend and I just bought a house. Um, and I was still having all of these really, I mean, some of the worst symptoms I've had. I had um a couple weeks ago, I um woke up early and I went into the bathroom. And while I was in the restroom, I heard this, the uh sound of my boyfriend being murdered.

SPEAKER_04 20:51

Oh no.

SPEAKER_00 20:53

So um, so we're coming to hopefully the end of that. We're doing a major medication change right now. But I just realized um with my doctor, we were talking about medication. And she said, Okay, well, when you started this antipsychotic, because I'm on three right now, paring it down to one to start over. And she said, you know, did it get better? And I was thinking about it in college, and I'm thinking, well, it didn't get worse. So I assumed it was working because things didn't get worse. And then it happened with another one. Well, things didn't get worse, and so I'm now coming to realize that there is a difference between working and things not getting worse.

SPEAKER_03 21:29

Low bar. Okay. So you're working, you have a relationship, and you're working with your illness to manage it. And all of these are amazing, are amazing things. And I I I I feel for you because you seem so upbeat and positive and optimistic, and I and I know that that you're doing. A lot. Do you think that an outcome like yours is possible for everyone? Or is it just that you got you were aware of it early, you got help early? Like what do you think about that?

SPEAKER_00 22:18

Well, I think theoretically an outcome like mine is possible for everyone. Currently, with the way things are, I it's it's just not, there's not enough treatment available for some people. You know, some people medication doesn't work, therapy doesn't work, you know, you can do anything and it just won't help. Um, I think we need to uh really destigmatize it a lot because I think one of the main reasons that I do as well as I do is because I said something immediately and I felt comfortable doing that. I felt comfortable telling my doctor, hey, I heard something, I saw something, this is a problem. And that's just not something that you know most people have. And on top of that, I was already in the care of a psychiatrist because of the depression. And what we're kind of realizing now are probably negative symptoms in the beginning. Um, and so as much as I would love for everyone to have, you know, this be potentially, you know, their outcome because of the system, because of cost, because of what's available, because of the stigma, it's just not possible right now. And that really, really needs to change.

SPEAKER_04 23:22

One thing I notice about you know a lot of our people that um interact with this program are listeners. They don't they watch it on, they don't watch it on YouTube, they do podcasts. And so just for people who can't see you, you know, you Katie is a beautiful young woman. It doesn't look to me like you gained a pound on three antipsychotics, which is a problem, even being on just one for my son. And I'm wondering, are you taking any medication or have any regime to counteract the hunger that comes with so many antipsychotics? Or how how is it that you do not look at, in addition to doing so well, you don't look like the typical person who's struggling with schizophrenia?

SPEAKER_00 24:07

I did not always look like this. I um did gain probably at least 30 pounds with my first antipsychotic, and it was very um distressing to me. It screwed up my athletics so much that I was expected to go to state for high jump and I couldn't even make it to an invitational. Um, and so it was really upsetting for me. It was something that I had always taken for granted. I mean, you would be horrified by the number of cupcakes I could eat and not getting out. And suddenly it was like I couldn't get rid of it. So unfortunately, um the psychiatrist who I saw when I was in college gave me some things that I shouldn't have had. You should not give stimulants to people with schizoffective disorder. He gave me a stimulant to kind of cut my appetite a little bit. Um, ultimately, I ended up going through a period of anorexia really because it was bothering me so much and because I got depressed and my appetite kind of went away and I saw that I'm losing weight and this is great. Why don't we keep not eating and lose all the weight? And then I gained all of it back. So I actually lost a hundred pounds in total for my highest weight. And I was lucky enough to be able to work with a trainer for a little while and then just kind of kept maintaining activity as best I could. I do still fluctuate a little bit. It's something that I have to stay at least mildly active in order to keep it to a range that I can tolerate. But um, but yeah, no, I didn't always look like this.

SPEAKER_04 25:34

Oh, did you know you had to do that, or did any mental health professional um encourage you to do exercise and eat better and all of that? No help. You just did it on your own. Because I think everyone should do that, but I think a lot of people need a little nudging, and that doesn't often come from the mental health system.

SPEAKER_00 25:53

Yeah, I mean, it's just like that psychiatrist who gave me stimulants. It was, it wasn't, you know, why don't you go try and do this exercise or that exercise? I told him I was running, but he never suggested anything else. It was here, take more pills.

SPEAKER_03 26:07

Well, Mimi, do you have any questions that you want to ask?

SPEAKER_02 26:12

Yeah, this happens to me every time we interview somebody like Katie. I look at Katie, I listen to Katie, and I think what Katie has is not what my son has. You know what I mean? It's I mean, we know that schizophrenia and schizoffective is bespoke for each person. But I think that the thing that is that line delineating between a possible or probable good outcome and not is that self-awareness. I mean, because it sounds like from the very beginning you identified that something was going on that wasn't right and you were different. And I think of my son, and I think probably all our sons, they're just went off into their own other world, and there was no convincing them that they were somewhere else. You know what I mean? Just such a complete lack of insight, and I I don't I don't know how you how you nudge somebody towards insight, but I feel like that is the stumbling block in moving towards a meaningful recovery. I mean, when you want question, because I mean I I've gone through this myself from a mother's point of view, when you're driving down the street and you see the guy on the corner screaming, somebody who's not there, do you feel a kinship? Do you feel that oh he has one I have?

SPEAKER_00 27:46

Yeah, I feel um mostly it makes me sad because I wish that he had the support that I did. I wish that he had the care that I did, the access to medical care and and all of that. And I just see a failure of society. Like we let him down because he, you know, in a perfect world, he could have been me.

SPEAKER_03 28:09

That's a Christian. That's a great answer. And let me lead that to your work, your blog, your writing. I don't know what you do for a living. You might want to share that with us as well. I mean, I know you have a job. I don't know what it is. I know you have a boyfriend, I don't know, but so I want to hear what you do for your job. Um, and it may be the same thing as I'm going to ask you about now, but you have this wonderful blog, Hadesanford.net, but the name of the blog is not like the others. And you do a lot of writing for the mighty. And what you wrote on your blog is throughout the course of my life with schizoaffective disorder, I've always been considered high functioning, but high functioning doesn't mean my life is normal or even symptom-free. And then you said receiving a mental health diagnosis isn't the end of your life, it's the beginning, beginning of a new chapter. And you talk about hope, but hope wasn't enough to solve all my problems. And so that really struck me. And so I'd like to hear a little bit about what you do for a living, but really about what you're doing for advocating and for helping others. And do you feel like your story could ever help that man screaming on the street corner who hasn't had the support that you've had?

SPEAKER_00 29:29

Yeah, um, I am a legal assistant right now. The ultimate goal was law school, but kind of put it off for now. Kind of it was hard to accept, but I really have to do what's right for me right now. And so I work part-time um for an estate planning law firm. And I am very lucky in that they are incredibly supported. I was supportive, I was actually full-time at first. I had to drop down to part-time because I was having panic attacks and symptoms and um hallucinating and things like that. And they were great about it. And I kind of kept my diagnosis close to my chest for a while because that's what I default to in the work environment is nobody needs to know.

SPEAKER_03 30:07

You know, the there's laws, but the laws when it comes to something like schizoaffective disorder, schizophrenia, I mean, just my son was always the same when he was doing when he was really stable and working full-time. He never, well, first of all, he doesn't think he has it. So that was a no-brainer for him, but he never told anybody because he probably wouldn't be hired. They'd find another reason. Oh, yeah. Oh, that we just don't have the hours for you. That happened a few times. But all right, anyway, so go ahead.

SPEAKER_00 30:33

So working as a legal assistant, and it's yeah, and um and actually recently, just within the last few weeks, told them my diagnosis and what was going on, and they shocked me by not only supporting me, but actively coming up with ideas of how to help me in the workplace so that I could do my best. Um, that was really surprising. Meant a lot to me.

SPEAKER_04 30:57

Yeah, and they are to us to hear.

SPEAKER_00 31:01

Yeah. Yeah, I wasn't like I wasn't expecting them to fire me. We do a lot of work with um special needs trust and doing planning for people who have children with mental illnesses, but I wasn't expecting, I wasn't expecting that. But they're also very supportive of my advocacy work. I the whole advocacy journey kind of started in college. Um, in my junior year, I spoke publicly for the first time at an active minds club event. Um, and the it was great to just get it off my chest. And the number of people who said that I changed their mind, that I taught them something like it kind of made me realize that maybe there's, you know, a reason, or maybe there's some way that I can take these horrible things that have just destroyed my life to some degree and put them to some good use. So eventually I became uh co-president of that club. And then afterwards, when I graduated from college, I wanted to be involved still. So that's where I um turned to NAMI and did an advocacy training with them, and then I did um crisis intervention training training with them. And that was really where I feel like my impact kind of came in the most, and where I sort of developed my idea of where my purpose is with advocacy. Um, I believe it is very important for people with these illnesses to not feel alone, but I feel like what's missing a lot of the time is the understanding on the part of the loved ones, law enforcement, employers. And I think that's really kind of where I try and focus my efforts. Um, and so with crisis intervention training, I go and I tell my story for the Cook County Sheriff Office as well as um Chicago Police Department. And I think what really solidified it for me and um made me want to take it a step further and start the blog was um the very first time that I did crisis intervention training. It was just me, the other two panelists were only three, there were the other two backed out at the last second, and I had the whole stage to myself and I told my story. And afterwards, um, there were several people who stayed around to talk to me. And there were two gentlemen that have always stuck with me. The first said that he had always resisted this training. He had a buddy who said that the CIT training was the best training he ever did, and he thought, I don't want to learn about how to handle these, you know, people with kid gloves. And he said that just once he realized the humanity behind it and the fact that it's not about kid gloves, it's about helping this person survive, that that really changed it for him. And the other gentleman um said that he had a sister with schizophec disorder who had been recently diagnosed, and he and his family just didn't get it. She seemed fine. What's the problem? And he said, I'm gonna go home and I'm gonna call my sister.

SPEAKER_04 33:52

Wow. What interactions did you have with the police to be doing the CIT?

SPEAKER_00 33:58

I had actually never I've never had um had to have the police involved um with myself, um, but I know uh others um who I am familiar, you know, with rather of a friend who has had interactions with the police and I've heard all the news stories and things like that. And so I felt like this is a a section of people who, you know, they shouldn't the police shouldn't be the first responders when it comes to this, but this is what we have now. And so if this is what we have now, that we have to make sure that they are as prepared as possible. Um, and last year I did attend the Crisis Intervention Training International Conference, and that was really exciting to see what they're doing and how they're sort of changing it. Um, but again, with the emphasis of just there are going to be times where law enforcement is involved. And through the Cook County Sheriff, I also speak for correctional officers. And so I like that as well because Cook County Jail is has a very high population of mentally ill um prisoners. And I mean, they need they need people around them who understand to some degree what they're doing. And so I feel like there's only so much you can learn from a book. There's only so much that you can learn from, you know, someone talking about it. I read, you know, people talking, you know PhD uh, you know, psychologists talking about what it's like to experience schizophrenia, but it's not the same as talking to someone who's done it, who's been there, who can humanize it and and put a face to it. So that was kind of where crisis intervention training and just speaking in general sort of fell totally in line with that. And then I've always loved writing. Um, so the blog came pretty naturally, but it took me a few years to get up the courage to do it because I was very afraid of the stigma, even though that's what I was trying to break.

SPEAKER_04 35:54

I think that's something we all struggle with, but wow, what a wonderful way to break the stereotypes to get a chance to listen to you.

SPEAKER_03 36:03

Yeah. I have one sort of little question, and then because we are, you know, down to our last few minutes, and um, I want to ask you about your boyfriend.

SPEAKER_00 36:15

And when did you reveal to him that you had that was a very interesting situation? Um, in the past, it was always with previous boyfriends. I hid it as long as possible, and then there was, you know, I had to refill my pill case before I went over, you know, to his house and have an ex from college. And I was like, okay, I'm gonna look like a drug addict for a minute, but hold on, I'll explain. Um, with uh my boyfriend now, we actually knew each other from high school and hated each other. Dated each other's best friends, couldn't stand each other through the magic of Facebook, reconnected. And so he found out about my diagnosis before we ever became romantically involved because he was just a friend. He's someone, you know, back in California, I'm in Chicago now. Who's gonna care, you know, if he thinks I'm some kind of crazy person or whatever, you know. So I had no problem opening up to him about it. But him coming here and moving out here and living with me did pose some challenges for both of us because it was a change to my situation. And I also have PTSD from an abusive relationship that I ended up in, um, emotionally and sexually abusive relationship that I ended up in because I didn't feel like I could manage life along with schizoaffective disorder and OCD and a dog. And so I kind of took the first person who said the right things and it turned out to be a horrible choice. And so having James move out here to be with me was uh tough to do, but I was very lucky too in the fact that he wanted to support me. So he actually sought out uh an online class on schizophrenia to learn more about it, and he's always asked questions and and things like that. So he's been really really supportive, but it was definitely um I got lucky in that we were friends before things ever went to the romantic side.

SPEAKER_03 38:14

Okay, I I have one final question, but I want to give Mimi a chance to uh have any reflections because I see your face. I'm kind of like, hmm.

SPEAKER_02 38:25

Yeah, you know, I don't really even know what, except that I would encourage, implore, hope that people like you with schizophrenia or schizofective could find ways to interact with people like our sons. Because I think, and I don't mean women to men, but I mean people who have have a meaningful recovery. Because I I whenever I take Nick to and you know, we're in some kind of group or something, and he's interacting, and we're sitting in a room full of people with schizophrenia, it's not the most uplifting experience. And he does so much better when he interacts with his siblings or with just somebody on the street, you know what I mean? And it's this lifting up thing. And I would and it I feel like there's a real gulf between high-functioning, successful people dealing with SMI and all the rest. And I think that people like you could be a vector of hope to people like him to see somebody like you and say, oh, well, she has schizophrenia like I have, you know, that's interesting. That opens a door. So I mean, that's not really a question, but that that's what talking to somebody like you brings to mind for me.

SPEAKER_03 39:55

Right. So that's but this is not an interview, it's a conversation. So I I wanted to hear that. And what keeps going through my mind is the next bachelorette won't be Katie because she's taken, should be somebody with schizophrenia. And then we'll have all the bachelors have some and watch them deal and relate. I just think that would be awesome. But anyway, unless there's something else you wanted to add, I wanted to ask you what you would say to families to what sort of support do you feel family can play in somebody's recovery? I realize it's your journey, and my son's journey is my son's journey, but we all, you know, we try to provide the the guideposts along their road as much as we can. What message would you give to families and what message would you give to practitioners?

SPEAKER_00 40:50

I would say um to families, the the things that I think helped me the most that my family provided for me was um some level of control over my life. I, you know, maybe I shouldn't have been the one to decide whether or not I went to the hospital, but even if I had been able to choose what I took with me or something, just having some normalcy, some sense. I mean, that's why I wanted to go to college. When everyone said a gap year, I wanted to go because I knew if I wasn't there with all my friends, you know, all my friends off doing all these great things, and I'm here stuck at home working my job without, you know, really any forward motion, then um it would be really hard on me. So I know that it's not possible with people with schizophrenia and schizophrenic disorder with children or even adult children, it's not possible always to live a normal life, but to kind of have that, and that's sort of what I feel like, you know, with with your son me and all that is it's being around normal aspects of life that helps you feel normal. If you're going to school or, you know, even if you can't go all the time, having a job helped me a lot. Of you know, just some kind of normal sense of routine or a normal life, not everything about pills and hospitals and where, you know, what symptoms are you having today? Just some kind of normal aspect of life. And then also just patience. That's something that I know that I know I try everybody's patients. I try the patience of my employers, my boyfriend, my family. But a lot of it is out of my control. So as hard as it is, being patient and not taking things personally sometimes is probably some of the best advice that I could give to families. To practitioners, I think it's to believe your patients more. I think there are so many situations. I mean, my psychiatrist in college, the part of the reason I left him was because he laughed at me when I told him about the eating disorder. I said, I'm eating less than 500 calories a day. And he laughed at me. And yeah, and he became when I had um, because of the Adderall that he put me on, it triggered like a psychotic depression, and I came within 30 seconds of killing myself. And what I did was I managed to snap out of it to some degree, um, just barely. And I had it to like an ace-band, it's like a pressure wrap, and I wrapped from my wrist to my elbow to kind of cut that urge to you know, cut my wrists and end my life. And that psychiatrist became so fascinated by that that he just let me treat myself. I remember having very severe hallucinations. And I said, Well, aren't you gonna increase my antipsychotic? And he said, if you want to. And so it you I know that sometimes the claims of of people, you know, under the care of practitioners don't sound real, but you have to put some stock in what they're saying and what they're believing and what they're experiencing.

SPEAKER_03 43:49

That's amazing, Katie. I uh just want you to say the name of your blog, the name of your website, anything else you want our listeners to know. And and then we just want to thank you. You've been amazing. What a pleasure to meet you.

SPEAKER_00 44:06

Thank you. So the name of my blog is not like the others, and it's at katysamford.net. And I guess I just hope that you everybody was able to take something away from this, whatever it was, and just look at things in a different perspective.

SPEAKER_03 44:24

Thank you. Mindy, Mimi, any last words? Thank you so much.

SPEAKER_02 44:28

So happy to be here.

SPEAKER_04 44:30

Thank you. You did you did give us a wonderful uh other perspective because as um Mimi said, our sons struggle, struggle a lot, and they're not as successful as you are. So you do give us hope, and I like Mimi wish that that my son could interact with more people like you. I and I wish my daughter could too, because I think you raise expectations, and often raised expectations are things people meet. Awesome.

SPEAKER_03 44:58

Katie, thank you so much. Thank you so much for having me. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.