Episode 105: Ashley Smith, Mental Health Advocate
In this episode, Karen speaks with Ashley Smith. Ashley is a mental health advocate living with the diagnosis of schizophrenia, a parent, and the creator of the blog Overcoming Schizophrenia. Ashley is the author of two books related to Schizophrenia: What’s On My Mind, A Collection of Blog Entries Related to Schizophrenia, and What’s On My Mind, Coping Takes Work.
Ashley Smith Bio
Ashley Smith is an advocate, author, and speaker. In 2008, she established the Overcoming Schizophrenia blog, which offers her candid journey of recovery. The blogger self-published her first book, What’s On My Mind? A Collection of Blog Entries from Overcoming Schizophrenia, Volume I (2014). The book’s foreword was written by Christina Bruni who is an author, journalist, and schizophrenia expert. Recently, a popular review recognized Ashley’s blog among the “Top 20 Schizophrenia Blogs and Websites to Follow in 2019.”
In 2019, Ashley wrote the foreword to The Voices Behind Mental Illness, Pain, Positioning, & Purpose, by Venessa Abram, MBA. Ashley’s recovery story was highlighted in the news with WGXA News Anchor Nakell Williams, and Fox 24 in Georgia (February 14, 2019).
Moreover, Ashley’s story was one of three featured in Janssen Pharmaceuticals documentary, Living with Schizophrenia: A Call for Hope and Recovery (2011). The advocate’s story was also featured on CNN: Human Factor with Sanjay Gupta, BET Health Heroes, and on the Tavis Smiley Show.
Ashley is a trained speaker of the Respect Institute of Georgia. She spoke at many mental health conferences. One her talks was at the annual conference of Schizophrenia Society of Nova Scotia in Halifax, Nova Scotia, in 2010. In 2011, Ashley spoke at the Sunlight Village Mental Health Conference in Dayton, Ohio, which was sponsored by the Ohio Commission on Minority Health.
Furthermore, Ashley was one of the keynote speakers for the Georgia Mental Health Consumer Network (GMHCN) annual conference, in 2014. The GMHCN hosts the largest peer-led mental health conference in the southeast, and provided a complimentary copy of Ashley’s book, What’s On My Mind? Volume I, to every attendee.
Ashley is a former board member, and state trainer for NAMI Georgia, Inc. Ashley was a NAMI “In Our Own Voice” presenter, and shared her recovery story in several Crisis Intervention Team (CIT) training classes for law enforcement. NAMI is the National Alliance on Mental Illness, which is the largest grass roots mental health advocacy organization in the United States. These are some of Ashley’s accolades with NAMI:
• NAMI Georgia’s Peer-to-Peer Mentor of the Year Award (2010)
• NAMI In Our Own Voice Hall of Fame (2013)
• NAMI In Our Own Voice Hall of Fame (2014)
Currently, Ashley partakes in CURESZ Foundation Advisory Council. Finally, Ashley is a mother of one, and resides in Atlanta, Georgia. To learn more about Ashley Smith, visit her blog at overcomingschizophrenia.blogspot.com.
Intro Voices 00:04
Where do I go? It only happened once. I think I was singled out. The phone calls began about one month ago. What is hazing? Something happened to me when I was younger. I'm worried about my safety. He said he was sorry. Can someone help me? Where can I get help? Can someone help me?
Karen Ortman 00:30
This is You Matter, a podcast for the NYU community developed by the Department of Campus Safety. Hi, everyone, and welcome back to You Matter, a podcast created to teach, inspire and motivate members of the NYU community who have been victimized in some form or fashion and to identify resources both on and off campus that can help. I am your host Karen Ortman, Associate Vice President of Campus Safety Operations at the Department of Campus Safety, and a retired law enforcement professional. I welcome Ashley Smith. Ashley is a mental health advocate living with a diagnosis of schizophrenia. Ashley is a parent and the creator of the blog, overcoming schizophrenia. Ashley is the author of two books related to schizophrenia. What's on my mind a collection of blog entries related to schizophrenia? And what's on my mind, coping takes work. Ashley, welcome to you matter.
Ashley Smith 01:30
Thank you very much, Karen.
Karen Ortman 01:32
My pleasure to have you here. It's very nice to meet you. And to finally have this conversation together. So, so welcome. Let's start by talking about when you were diagnosed.
Ashley Smith 01:49
I was diagnosed back in 2007. When I was 20 years old, I learned about my diagnosis to an unfortunate circumstance that landed me in jail and eventually in the state hospital where I was diagnosed.
Karen Ortman 02:04
So up to the point of the age of 20, prior to diagnosis, what symptoms did you experience that you now know, of course, in retrospect, had something to do with your diagnosis?
Ashley Smith 02:21
Yes, I had a range of symptoms, I experienced hallucinations, delusion, I thought that I had special gifts, talents and abilities that other people did not have, like the ability to read people's minds. I thought that I can see ghosts and spirits and shadows. I thought friends and family were against me gossiped about me, and just a range of different symptoms that are typical of schizophrenia.
Karen Ortman 02:49
Yeah. So the symptoms were were impacting your life.
Ashley Smith 02:56
Yes, I most likely had some of those symptoms back in high school, but it did not affect my ability to function until college
Karen Ortman 03:07
really and did you? Do you have an understanding of what changed by the time you got to college that the symptoms impacted your ability to function.
Ashley Smith 03:21
Looking back on my experience in the events and things of that sort, I believe it was my stress level. mental illness, as you know, has many different causes environmental factors, genetics, and stress is a major trigger, the ongoing assignments, exams, things of that sort that the general among college students, I could not cope with that. At one point, I was on the Dean's list. At one point, I was on academic probation. And eventually I dropped out of school to regroup from what I thought was stresses. And eventually I was diagnosed.
Karen Ortman 04:05
Yeah. So for the benefit of people who are listening, who are impacted by stress, who may be similar in that they're excelling in school, but then things change and they're not. And perhaps they have experienced symptoms similar to you. Can you describe in a little bit more detail your symptoms and how they impacted you that differs from maybe the everyday stressors that a college student might experience?
Ashley Smith 04:46
Yes, in short, it is everyday stressors, but the thing with my diagnosis is that it's how I'm coping with my stress around that time. The tuition went up, I relocated from Georgia back to California to stay with family. And just the stress of the financial costs of schooling going up, the stress of locating to another place a new environment was very stressful. And that's, that's typical stress is for most people, but when my diagnosis, I was not aware of my diagnosis. And I did not understand how stress could impact me and hurt me. And you know, in response to my condition,
Karen Ortman 05:40
yeah. Had you ever considered schizophrenia prior to your diagnosis?
Ashley Smith 05:48
Schizophrenia does not one of my family and depression is very much more... people are more able to connect with people who have depression because of general circumstances that everyone may may face at one point or another financial hardship, grief and loss of a relative or major individual in our in our lives. list goes on. But when I experienced these stressors, back in 2007, was 20 years old. They came with a lot more than pressure they came with hallucinations and delusions, rolling over into paranoia. severe mood swings, and eventually catatonic, where I will not move I will not respond. I will not speak I was in the days and not present for long periods of time, hours and sometimes days.
Karen Ortman 06:47
Were you scared?
Ashley Smith 06:50
I didn't know what else was happening. I was scared Yes, with the situation that led me to my diagnosis the event. But then eventually, when I was experiencing those wide range of symptoms, I was not aware that I was not well, I was not aware of how I was... how my mind and my energy level was deteriorating. I was not aware that mental illness was the cause of all these situations I was going through. And I was ignorant of what mental illness was or that can impact me and my family and how it has.
Karen Ortman 07:31
Yeah. So you said that there was a traumatic event that you experienced that? Is it fair to say forced you to, to seek help?
Ashley Smith 07:47
Yes, it was. It was a significant event. What happened that day, was that my symptoms overwhelmed me. I was psychotic. I didn't understand what was real what was not real. I thought that everybody, family, friends, strangers, and everybody was against me. I felt like my life was in danger. I felt like I had to protect myself by running away. And that's what led to me taking a truck, a military pickup truck, and going on high speed chase with the police and eventually been arrested and hospitalized for five months.
Karen Ortman 08:32
Okay. So how was your experience in terms of the help that you received, and the resources that were made available to you when you were in the hospital for five months?
Ashley Smith 08:51
I am very fortunate to receive the services that I received. I was put on medication. I was educated about my diagnosis educated about my legal rights, educated about or made aware of rather recovery as possible. My doctor said, I could go back to school, as long as I did two things, man to my stress and take my medication.
Karen Ortman 09:23
And how did you feel about that when you were told that those two things were required?
Ashley Smith 09:30
I was relieved because I learned that this was a life long condition. But I still can lead a normal life and that was that was huge. I was so glad that they that there is hope.
Karen Ortman 09:51
yes I'm sure. And after your five months stay where you were told of those two conditions that had to be met, you ended up leaving the hospital. Right? So tell me about your life and and how you coped with your new condition or your how you coped with your diagnosis, which you now know to be schizophrenia. How did you move forward in your life and make that diagnosis, a part of your learning journey,
I'm very fortunate to have learned about my diagnosis to know what I'm dealing with. And to know that there are treatment options and to become aware of what I need to do to manage to live a quality life. And what that looked like for me was getting involved in a program for people with diagnoses, substance abuse and mental illness. Participating in one on one therapy and gaining insight and tools, from a wide range of resources in the recovery field, including WRAP the Wellness Recovery Action Plan, by Mary Ellen Copeland. Therapy has been the foundation of my recovery, I, I encourage others to go to therapy, because it's helped me tremendously. The thing about schizophrenia is it is a thought disorder. It has nothing to do with your intelligence level. It's about the the challenges of thinking, clearly problem solving, and things of that sort. And so therapy has helped me in several ways, it's helped me organize my priorities, it's helped me learn more about what are my inner strengths, and how I can cope with my stressors. For example, my blog, I started it, because I wanted to dive deeper into learning about my diagnosis. And I was blogging anonymously initially. However, I've always wrote, I've always kept a journal. And in therapy, my therapist and I created you know, the, the whole idea of a mood journal, where I was writing regularly and identifying my mood swings, identifying whether it was a good day, poor day, if I was in crisis, or if I was extremely well, we're at work experience mania. So I've gained a lot of coping tools that are actually working for me, and I'm grateful to learn and to grow with those tools that I've been offered.
Karen Ortman 13:02
Yeah. So you recommend journaling? For maybe others who are or have experienced what you have experienced, and maybe not necessarily the same diagnosis, but maybe any other mental health issue that's ongoing in their life.
I do recommend journaling. First and foremost, I recommend therapy because some people may not feel comfortable with medication. Some people may not respond well to medication for different reasons. Therefore, I promote therapy to everybody living with the diagnosis. And I know it could be challenging to open up in those sessions, but you're gonna get results if you if you continue to participate, focus, develop those coping skills and use them.
Karen Ortman 13:58
Yeah. And you have since had a child,
yes, I have one child, I have a son, his name is big boy. Oh, that's we call and he's nine years old. He gives me motivation to keep pressing forward. He gives me you know, commitment to my wellness for him. Yeah. And for me.
Karen Ortman 14:23
yeah. Do you have conversations with him about what you go through? In terms of mental health?
Ashley Smith 14:34
I tell them that I have an illness that other people can see. And that's why I take medication to maintain wellness.
Karen Ortman 14:43
Okay. How challenging was pregnancy? With this diagnosis?
It was considered a high risk pregnancy because of my diagnosis. I did have some other medical concerns with it. He was a premi. But I'm just grateful as able to stay on my medication and treat my mental illness in order to have a healthy pregnancy and child and to maintain wellness so I can manage myself my condition and manage being a new mother and things like that
Karen Ortman 15:20
Yeah. Has your diagnosis impacted the way in which you parent?
Ashley Smith 15:33
Most definitely. Even though my son is nine years old, I feel I'm determined to teach him how to be more independent at a younger age, because I may go through some highs and lows, where he may need to feel comfortable preparing meals. So I take that very seriously. Teaching him independence by showing them how to use a microwave. The next thing that we're gonna practice is how to do how to cook prepare other meals. And I take it not only as my responsibility as a parent, but I'm making it a key point to do that at an earlier age for him now, just in case, I'm depressed, and can't teach no uncertain in those situations. Yeah, it'd be a teenager, or whatever the case may be
Karen Ortman 16:37
sure. prior to diagnosis, did you seek any resources? When you were not feeling your best, but not yet diagnosed?
Ashley Smith 16:50
I did not seek any treatment. And I had no idea that I was dealing with a more severe condition, such as mental illness.
Karen Ortman 16:58
Sure. Okay. Let's talk about the stigma associated with mental health and mental health issues. Of course, you know, one of the purposes of this podcast is to talk to people about issues that are stigmatized, one of which is mental health. So I think it's a very important conversation, which is why I'm extremely grateful that you're willing to talk to me. But there is a stigma. How has that impacted your recovery, if at all, in terms of relationships with your peers or family? Are you supported in your recovery and in your... the manner in which you cope with your, your condition?
Ashley Smith 17:55
Yes, I'm so grateful. I have a strong support system that extends not only to my family and friends, but neighbors, coworkers in the past and things of that sort. church. So I'm, I'm very grateful. And having a diagnosis such as schizophrenia is very stigmatizing. Yeah, I've stigmatized myself in the past. I've run into issues with housing, I ran into issues on a religious level. What, for example, one myth about schizophrenia is that it's caused by poor parenting. Another myth is that people are demonic. Another myth is that recovery is not possible. Another myth about schizophrenia is that people are violent, and these are not all true. These are not across the board. These are all things that people take as a belief. And it's simply not facts. No. People with schizophrenia are very competent, are very sociable, not sociable. I mean, like are very open and warm can be open and warm. We are not demonic because of our medical condition. Yeah, we are not. We are working very hard on our recovery and various ways. I've been in a personal care home. I've been in the clubhouse and program. I've been through group therapy, one on one therapy and it takes a lot of work to manage this condition. Yeah.
Karen Ortman 19:45
Is it possible to live a life that includes some semblance of normalcy in terms of being able to work. Being able to enjoy self care whether that is going to the movies or going out to dinner? Is there normalcy associated with living with this condition that people don't realize?
Ashley Smith 20:23
Yes, but Karen. The thing is this is only my experience, everyone is gonna experience it differently. There are different types of schizophrenia, officially my diagnosis of schizophrenia and bipolar disorder, schizoaffective disorder. However, when I was diagnosed with paranoid schizophrenia, because there are different types of schizophrenia, I have been blessed with the ability to experience things that are not... have not always come easy. Now, I don't take my wellness for granted. I pray a lot, I can say I identify a spiritual and paper for my higher power, restoring my wellness mentally. I'm grateful for even the small things which seems small, but are not being able to master self care, including hygiene, including staying in routine with my medication regimen. Some people may take these things for granted, because that is their norm. And that is the routine. And it's in it's manageable. But this was not always manageable for me.
Karen Ortman 21:39
So you've come a long way.
Ashley Smith 21:41
Yes, I've been in recovery. almost 15 years, I've had some highs have had some lows. I been out of work. I've been in work part time, full time. I've been depressed. I've been hospitalized, living and experiencing postpartum depression. The list goes on and on. I work hard every single day to manage schizophrenia and bipolar disorder.
Karen Ortman 22:04
Are you happy with your efforts?
Ashley Smith 22:08
Most definitely, I see a lot of improvement. I see other areas where I need to continue to work a little harder. And because my wellness is not guaranteed. However, I changed my perspective and mindset. And I believe that recovery is possible. I work hard to discipline myself care rituals. And I believe that resiliency is the skill. And I tried to master that skill. Yeah.
Karen Ortman 22:38
So tell me about your, your blog. Over overcoming schizophrenia, your blog is still active? Yes?
Ashley Smith 22:50
Yes, yes. I started my blog back in 2008. It shares details about my personal journey and recovery. But I focus on the tools and skills that I've developed along the way I focus on not only the rough side of living with diagnosis by focusing on the work that I do, and that is identifying my triggers. taking my medication regularly, you know, listening to my body, and on over the years that, yes, you can say in short, that it triggers stress, but everyone experiences stress, everyday stress is going to happen. But I have learned the signs that I may be overwhelmed. And I may need to take a step back from working from doing regular activities and get more rest.
Karen Ortman 23:52
Yeah. So can you just give me and listeners some insight? Like what signs might you pay attention to that are triggering for you?
Ashley Smith 24:02
Yes, I've noticed that I may be experiencing some shifts in my mood, or I may anticipate some challenge is whenever my sleep is disrupted, if I have minimal sleep, and high energy, for example, if I'm staying up all night, or if I can't sleep through the night, I try to stay focused and do different things to stay busy. But I know that I may expect to be depressed or I may expect to be manic when I'm texting people a lot, when I'm talking fast, when my trash is overfilled because I'm very particular about dump the trash even when it's half full. I just don't like to see it. And I don't want issues in my kitchen. But just the little things. Those are my side. If I'm isolating. You know, and sometimes I do I sleep. But that's, that's my norm like everyone else to regroup to meditate focus to redirect. But my signs may be a little subtle. And so I had to be mindful of my habits and my moods, so I can try to adjust them.
Karen Ortman 25:22
Yeah. Thank you for sharing that. So if listeners were to check out your blog, they would find many different posts related to a lot of important issues related to, you know, a diagnosis such as yours. So you know, an example, detrimentally and denial, fear to openness and medication. Good Doctor, bad doctor all really useful blog posts that could educate anybody who's interested in learning more about such a diagnosis. So I encourage anybody who's interested to check out Ashley's blog post, do you know the web address off the top of your head?
Ashley Smith 26:17
Yes, I blog. Overcoming Schizophrenia can be found at overcoming schizophrenia.blogspot.com. Okay, thank you. Now, Karen, I need to get back into blogging, but I'm wrapping up a major book project. I'm actually revising my first book, what's my mind value one, a collection of blog entries from overcoming schizophrenia. I will have it done within a month by sometime in November. And so I have not blogged in a little while. But the blog is still active. And I'm still excited about sharing, how recovery is possible.
Karen Ortman 27:00
Yeah. Great. Let's rewind for a second. And go back to when you first were diagnosed with schizophrenia, and I believe you said bipolar.
Ashley Smith 27:16
Yes, my I was diagnosed paranoid schizophrenia. And eventually, it shifted my diet, my official diagnosis changed to schizoaffective disorder, which is schizophrenia and bipolar disorder. Yes.
Karen Ortman 27:27
Okay. How did you feel when you were told your diagnosis.
Ashley Smith 27:35
I was confused, but also a little bit relieved. Because something had an there had to be a reason why these events were happening to me. And I was the last to know. So the signs and symptoms the eye doctor was explaining to me, and in phrases and words I can understand. It was kind of relieving. And so now it's like, okay, I know what I have. Now, what I need to do to overcome this. And that's how I look at my diagnosis. That's how I came up with came up on my blog. I look at it in a way overcoming schizophrenia and looking on the solution, which is to learn how to cope.
Karen Ortman 28:13
Yeah, yeah. Is it comfortable for you now, or a little uncomfortable still, to say what your diagnosis is? out loud.
Ashley Smith 28:34
I blogged anonymously. However, by getting very involved in advocacy, getting very involved in peer support, I've developed more confidence in myself. And so I say it publicly. In my book and my blog, when I'm having casual conversation with people when I want to make a point, that recovery is possible when you know, sometimes people may see me holding my book, and they see the word schizophrenia, and we hold a conversation. They happen know someone with schizophrenia, and I just reinforce what I've learned that recovery is possible for those of us who also have schizophrenia, because it is seen as a very severe condition. And it can be very severe don't don't get me wrong, it can be very severe. I've been through some really low points. Now, why did not understand or know that I was in the midst of my worst signs and symptoms with the loose nation seen in the air things that he did not experience and not knowing what is real and what is not.
Karen Ortman 29:44
Are there peer support groups for people who have a diagnosis of schizophrenia?
Ashley Smith 29:51
Yes, there are many I encourage people to continue to research online but one that I'm very familiar with is Nami, the National Alliance on Mental Illness. I volunteered, I participated, I worked with Nami. And it is a very powerful organization that helps many families and friends and individuals who are managing this condition and who need support. And it's helped me tremendously. I've been involved with NAMI since 2009. And it's not only for individuals with the diagnosis for family, friends, caregivers, partners, teachers, veterans, the list goes on and on.
Karen Ortman 30:40
Now, you spoke earlier of some myths associated with a schizophrenia diagnosis. Are there any other myths or misconceptions that you want to bring to the attention of our listeners regarding a diagnosis of schizophrenia?
Ashley Smith 31:08
Karen I I'm so glad that I'm able to be a part of your, your your show, because this is... this is my heart. This is my life. And so when I identified those myths, one myth is that people with schizophrenia violent another myth is as caused by poor parenting. Another myth is that people are one myth is that people are demonic. And a major myth is that recovery is not possible. These are all this, I've experienced this firsthand, I've been called demonic. My mother, before her passing, has been has been considered the cause of my diagnosis. I had heard, I had been looked differently. I have been told I can't do a lot of things. But I choose to look at people and friends and others who have this diagnosis, who are doing the things that I want to do. And so I rely on my support system, I look to my friends who also have a diagnosis on recovery and doing well and I say, okay, what are they doing? What can I do?
Karen Ortman 32:27
You're very strong person. You seem to be doing very well in your recovery. Your two books we spoke of before? Is there anything that you want listeners to know about your books, one of which I know that you are updating, and that's related to your blogs. Anything that listeners need to know about your books or where they can find your books in the event, they're interested in obtaining them?
Ashley Smith 33:02
Yes. Thank you so much, can my books what's on my mind, they are available on Amazon, the first book, it focuses on how I learned about my diagnosis, how I became a mentor of advocates, and how I got involved in Nami, the National Alliance on Mental Illness, it talks about those challenges that I had, before I was diagnosed. And when I was going through my initial stages of recovery, it talks about me being a peer counselor, certified peer specialist. My next book, what's my mind coping takes work. It goes again to what I encourage others to do, which is get involved in therapy. I talked about the benefits of therapy, it helps the whole person. Oh, those are differences between my books. Again, there, they are both focused on my blog of overcoming schizophrenia, a collection of blog articles. They are available on Amazon, I encourage everyone to get a copy not only if you have schizophrenia, if you have another diagnosis, depression, bipolar disorder, if you are a caregiver, a parent, a loved one, a friend, a partner, I go into detail I get down to nitty gritty about my experience with the voices in the first book, I talk about how therapy can be very resourceful and it helps look at alternatives to coping alternative to finding solutions and problem solving. So I encourage everyone to take a look at my blog and to look on Amazon to get a copy.
Karen Ortman 34:51
Okay, is there anything that we haven't talked about today that you would like to share?
Ashley Smith 34:56
I I think I just want to encourage families and other individuals who have a diagnosis like mine to keep pressing forward. The last hospitalization I have was back in 2018. I've, I've had many experiences behind the scenes, you know, off the blog. And I just encourage people to keep trying if you if you have a setback, any setback, whether you're hospitalized or not, do not give up. Keep trying. If you're on medication, talk to your doctor, take as prescribed. If you are considered therapy, participate, give, give those things that give it to all and you will see the fruits of your work, you will see so much progress. I've learned so much about myself and I just encouraged my peers and our families and loved ones and support system to never give up hope and to know that recovery is possible one step at a time.
Karen Ortman 36:07
Thank you. Thank you once again to my guest, Ashley and to all of our listeners for joining us for today's episode of You matter if any information presented was triggering or disturbing. Please feel free to contact the wellness exchange at 212-443-9999 or NYU is Department of campus safety and their victim services unit at 212-998-2222. Please share like and subscribe to you matter on Apple podcasts, Google podcasts, Spotify, and Stitcher.