My Experience with Schizophrenia/Schizoaffective Disorder

My Experience with Schizophrenia/Schizoaffective Disorder

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- Hi, my name is Lauren and I'm gonna be making a series of videos, talking a little bit more about my experience with mental illness, as well as schizophrenia and schizoaffective disorder and to just kind of give a little bit more information for people who are newly diagnosed and looking for more resources, or for their loved ones who are looking for better ways to support them, or for people who just wanna know more. So in this first video, I'm going to be sharing a little bit more about my own personal story with schizoaffective disorder. Jumping right into it, again, my name is Lauren and I was diagnosed with schizoaffective disorder in 2015 at the age of 25. It took several years of struggling as well as misdiagnoses to arrive to this point though and so I'm just gonna share a little bit more about what that entailed, as well as what living with this illness looks like for me. So starting with my childhood, it was fairly normal though it was definitely a little bit more of a quieter kid and at times, kind of struggled with socialization with some of my peers, which may have been an early warning sign, or indication, or symptom of something to come
01:04
but I didn't really start struggling until my teenage years. I always did quite well academically and I really loved to read and learn but something kind of shifted though in high school and I began to struggle with my mood and what I can now identify as what were some negative symptoms of schizophrenia, which lead to an increased apathy in participating in school, as well as just kind of generally withdrawing from people and just from life. So this is when I also started to experience thought broadcasting, so where I thought that people could hear my thoughts, which, again, was an early indication or warning sign of something to come that I can now identify in hindsight. I skipped a lot of classes, which lead to lower grades but I was still about to scrounge together decent enough grades to not raise too many red flags but it was still a problem. This sense of apathy resulted in me not really being sure of what I wanted to do after high school but I decided to enroll part time at the University of Alberta, taking political science and psychology. I was still struggling quite a bit though and so with a little encouragement from my boyfriend at the time, decided to visit a family doctor to just kind of see
02:15
what was going on with me and to, I don't know, just find out a little bit more about what was happening. So during this visit, the GP diagnosed me with depression when I was 19 years old. So I continued to struggle with what I thought was depression for several years. During this though, there were periods were I would feel really, really great and during these periods, I would go off, or I would be really productive and I would go off on adventures, traveling or running in the mountains but the depression always came back and it almost seemed worse each time it did. During this time, I also realized that I wanted to pursue a career in social work and so I decided to transfer to the University of Waterloo in Ontario in order to finish my studies there. I got through my first bachelor of arts degree okay and did quite while academically, earning several scholarships and awards. It was the year I started my bachelor of social work degree though, at 22, that things really kind of started to go sideways for me. So the fall that I started that program, my depression came to such a severe place where I was constantly thinking about ending my own life.
03:20
It was for this reason that I decided that something needed to be done and so I sought out counseling. The counselor then connected me with a family doctor, as well as a psychiatrist, both at the university who changed my diagnosis to bipolar disorder two, due to my severe periods of depression, as well as periods that sounded something kind of like hypomania. They were a really, really supportive team of professionals that I'm still so, so grateful for but despite this increased support, my depression came to such a severe place that winter, that I decided to take my own life. I overdosed but was taken to the hospital in time for them to treat me. This was unfortunately though, the first hospitalization of many to follow. I was so afraid of what people would think if they found out what I had been going through, so I mostly kept things quiet and to myself, which really didn't help things at all. I struggled a great deal with my mood and it was around this time too that I started to hallucinate regularly as well. So it began with just hearing my name spoken aloud, every now and then, even when I was completely alone.
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I kind of just initially brushed this off though, thinking that my imagination was just running amok, or something like that. And so I never confided this in anyone and I never told my counselors or my doctors at the time. I then began to have olfactory hallucinations, where I would smell these really awful smells that I couldn't identify and I couldn't locate the source of. It was really kind of a weird and confusing time for me. I struggled silently with these symptoms for quite a while and a year after my first suicide attempt, I attempted again but this time, it was quite a bit more serious. So I overdosed again and for whatever reason, my counselor at the time later told me that he just got this really bad feeling that something bad had happened to me that morning. I hadn't given him any indication that I was gonna do anything, I hadn't told him that I was gonna do anything but he just got this visceral feeling that something bad had happened and so he decided to send the police to do a wellness check on me. So the police arrived just in time to see what had happened and to rush me to the hospital where I was put into a medically induced coma
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and I was kept on life support for several days. Obviously I made it through but throughout all of this, my psychiatrist who had been trying me on a plethora of different medications to try to reduce the symptoms that I had been experiencing, we decided eventually to try a bit of a different approach and to try electroconvulsive therapy. It's a therapy that works for a lot of people but long story short, for me, it did not work and I was left with memory deficits as well. So things kind of stabilized and I was able to return to school, full-time and I started a practicum placement that I really, really loved doing research at the university. This went pretty well for almost two full semesters until I had my first, full-blown psychotic episode at the age of 24. So during this time, the hallucinations intensified and I became delusional as well. So I was hearing and seeing helicopters circling overhead and I was hearing voices. I became obsessed with retrieving my medical files, as I was convinced that the doctors were conspiring to kill me, or using the medications
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to poison me, or for mind control. I hardly slept at all, I was just flying off the walls with this paranoid energy. I was sleeping in my car, outside of the clinic waiting for it to open again in the morning, so that I could go in and again, try to obtain access to my files. I remember one particular night of doing this where I hallucinated an elderly man who was trying to break into my car to reach in and steal my files from me. It was a really, really terrifying period of time and my boyfriend at the time was witnessing this drastic deterioration and so he managed to somehow get me to go to the hospital with him. I don't remember a lot about how he did that but I think what was helpful was focusing on the emotions that I was feeling. So I was really scared and so he talked to me about that, rather than about the hallucinations and delusions that I was experiencing. He also convinced me that they would be able to help me at the hospital. So together, we went and I was admitted immediately and my diagnosis was changed to bipolar disorder one with psychotic features.
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They were able to stabilize me with medications and I was able to graduate from my program that spring. I landed a dream job doing research for Cancer Care Ontario and so I made the move to Toronto, to begin my professional career there. On paper, I was doing really, really well. I had just graduated from my second degree program, started a great new job, I had a lot of friends and a long-term boyfriend. I was living on my own and supporting myself but the hallucinations and other symptoms never really fully went away, though and that summer, I was struggling so much with these symptoms that I had to make the really, really difficult decision to move back to Edmonton to be closer to family and friends supports there. There was a lot of change going on my life around this time, which may have contributed to my worsening condition. So I had just graduated school, moved to Toronto, started a new job and then shortly after, quit my job, broke up with my boyfriend, moved back to Edmonton, moved back in with my Mum. So there was a lot going on and a lot of stress, so even after this move back closer to supports,
08:48
I could tell things were starting to get worse and the delusions were starting to come back. It was because of this that I decided to stop taking my medications again, because again, I thought that they were using them to poison me or for mind control. So no surprise really that stopping my medication lead to me having my second full-blown psychotic episode at the age of 25, when I was diagnosed with schizoaffective disorder because the psychotic symptoms were continuing without a mood episode present. So I had taken a psychopathology class in school and so was a little familiar with the term schizoaffective disorder but hadn't really ever heard of it otherwise. It was scary to get what seemed like a more severe label but it also almost came as a bit of a relief. So there was finally an explanation for the things that I was experiencing and all of a sudden, the things that I was experiencing seemed a little less scary and a little bit more understandable. There was still a grieving period though, when I first received this diagnosis because there really are not a lot of success stories
09:55
in broad circulation about people living with schizoaffective disorder or schizophrenia. Most of what we hear in the news or in media are the negative stories about people living with schizophrenia, or negative depictions about mental illness in general. So I no longer was sure of where I was gonna end up and that added an additional element of fear. So with this second psychotic episode, I ended up in the Alberta hospital for just over a month this time and it was a really, really difficult experience. I was refusing food and medication for fear of being poisoned again and I was being commanded by the voices to try to kill myself, by any means possible and I was trying to appease these voices by any means possible. So I was trying to strangle myself with a hospital gown. I was trying to hit an artery in my wrist with the toilet paper dispenser in the washroom. It was a really difficult and scary time. Finally though, at the threat of being forced into electroconvulsive therapy again, I finally agreed to take medication and to eat
11:03
and I eventually stabilized and I was discharged from the hospital. It was then though that I really started to grapple again with the internalized stigma of my mental illness. So I was so afraid of what people would think if they found out, or worse, that I would never be able to hold a stable job that I had always dreamed of having. I also continued to struggle with the idea of taking medications, which is something that I still struggle with to this day but I've kind of come to learn the importance of doing so and I've come to learn my own pattern of stopping medication leading to hospitalization or worse. The next year or so after this hospitalization consisted of putting in a ton of effort to re-establish a new normal for myself and to learn to manage my symptoms. The hallucinations can be really difficult to handle at times and I still deal with them even while I'm on medications. Also, the negative symptom of blunted affect is a really hard one for me to bear. I identify as a fairly empathic person and so when I'm cut off from my own emotions, or the emotions of others, it can be really difficult to handle. I am very happy and proud to say though
12:10
that I have not been in the hospital since this last time in October 2016, so it has been over two years since I've been in the hospital. I've been working as a social worker at a couple of different jobs and just this fall, I went back to school to start my Master's in science and public health in order to continue with my career in healthcare research. I'm also working as a research assistant at the School of Public Health at the university, so things are going well. It's been a real struggle and a real fight to get to this point and to overcome not only my symptoms but the internalized stigma or the stigma that I had internalized as well. Through this process though, I've learned so much about myself and I've learned just how resilient I can be. I've also started to reach out to supports such as the Schizophrenia society of Alberta, in order to better come to terms with and better understand my own diagnosis. If I'm being honest, I did lose a lot of hope when I was first diagnosed but I am learning that it is possible to still lead a meaningful and productive life, even with a diagnosis of schizoaffective disorder. So thanks so much for watching.
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I hope that hearing my story was helpful. If you want to learn more, I am planning on doing some more videos about living with schizophrenia and schizoaffective disorder, as well as just mental illness in general, so make sure to subscribe if you do want to see more of those videos and thanks again for watching and have a great day.

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