My Story | Living with Schizophrenia

- My name is Lauren and I live with schizoaffective disorder. Schizoaffective disorder is a combination of schizophrenia and a major mood disorder. For me, it's bipolar.

I was diagnosed in 2016 at the age of 25, but struggled with symptoms since my late teens. This is my story. A lot of people ask about my childhood, expecting it to be troubled in some way, but it really wasn't, for the most part.

I lived with my mom, dad and brother, and I had friends. I was definitely a little quieter than most and got lost in my own head a lot, but I was happy. I loved school, and I was very active in extracurriculars, such as competitive gymnastics, soccer and various volunteer work.

Then in high school, my state of mind began to shift. I was no longer this happy young person. I was more withdrawn, lost interest in school and just kind of generally felt adrift.

After high school, I wasn't sure what I wanted to do, so kind of just limped into post-secondary. I was very bothered by the world, though, and my role or kind of lack thereof in it. I began to feel extreme sadness and despondency.

I explained some of these sentiments to my family doctor and was prescribed antidepressants. I took them for a while, but gave up on them shortly after, as it didn't feel they were having much of an impact. My boyfriend had moved away after high school to pursue university in another province.

So my decision to eventually transfer to a school in the same province was perhaps informed by this, but also I felt a spark of excitement at the prospect of pursuing a degree in social work, and this school seemed to be the best fit. I enjoyed university, but was still feeling a sense of disconnect. I was quite rubbish in social situations during this period, too.

I had lost friends and I felt like the few I did have didn't really know me all that well. The times I did socialize, usually with my boyfriend's friends, I was quite awkward and silent, and it was hard to form social connections. I graduated with my bachelor of arts in social development studies while kind of bouncing back and forth between provinces a couple of times.

In 2013, I made the move back to university again to start what should have been a quick year-long bachelor of social work. This year ended up turning into three. My first semester in the new program, my head space became so depressed and confused that I realized I needed additional support.

I sought out counseling through the university. I had really no idea how to engage in therapy, and so my awkwardness and silent disposition bled through into these interactions as well. My counselor decided I needed further support, and so then connected me with a GP and a psychiatrist through the university as well.

It's hard for me to put into words how grateful I am that I had these individuals all trying to help and support me. However, despite this support, my headspace deteriorated to the point where I felt that the only option I had was to take my own life. I made an attempt on my life in January, 2014 at the age of 23.

Now, it's not the right wording to use to say that I wasn't successful, but regardless, I wasn't successful in taking my own life. I ended up hospitalized for the first time. When I got out of the hospital, I was just filled with despair at the realization that not only was I unsuccessful, but being hospitalized hadn't really helped at all, either.

The next year was a huge struggle trying to keep up with schoolwork while seeing my care team pretty well daily. I kept sliding further and further into despair. One year after my first attempt, I decided it was my best option to try to end my life again.

Obviously I was unsuccessful, but I came much closer to this time. I hadn't said a word about my plans to my counselor, but for some reason he had a feeling that something was off. He decided to send the police to do a wellness check on me.

They found me just in time to rush me to the hospital, where I ended up on life support for several days. Waking up in the hospital this time was absolutely crushing. All the same feelings as the last time came rushing back, but also this time I was filled with embarrassment, too, that I had now been unsuccessful in taking my life twice.

I felt like I couldn't escape this cycle. I was desperate for anything that would alleviate some of the distress that I was feeling, so I decided to follow the advice of my psychiatrist and give ECT, which is electric convulsive therapy, a try. ECT is a procedure where they put you to sleep and shock your brain to induce a seizure.

No one really knows how it works, but some claim that it has therapeutic value for treating some mental illnesses. It did not improve my condition, though, and left me with memory deficits. Again, more despair flooded in as yet another attempt at treatment and getting better made no impact.

Throughout the next year, I continued to try various types of medication with really minimal positive effects and plenty of negative side effects. During this time, I also began to experience new symptoms, which I later identified as hallucinations. It started with olfactory hallucinations, where I would smell these really terrible smells that I couldn't identify and I couldn't locate the source of.

I ended up convinced that I just reeked. I also began to hear voices. They started out with me hearing my name spoken out loud.

I brushed this off and the subsequent chatter that followed, thinking I could just hear conversations around me. However, it began happening even when I was completely alone. These new symptoms confused me and frightened me, so I never let my care team know about them at the time.

I could feel myself deteriorating mentally even further, and in March, 2016, at 25, I had my first manic episode. I became just fixated on the idea that my care team was hiding something from me and secretly trying to harm me. I fought the medical clinic to gain access to my medical files and just obsessively poured over them, believing I was finding secret clues and connections that would me closer to figuring out what was going on.

My boyfriend was starting to wonder if something more serious was going on. And after finding me sleeping in my car outside of the medical clinic one night decided to try to get me to go to the hospital with him. He was really actually great at focusing on validating the feelings that I was experiencing and being empathic about that rather than focusing on negating the delusional thoughts that I was having.

I think this was a really big part of what made me trust him in taking me to the hospital. I spent another couple of weeks in the hospital and eventually stabilized somewhat. And this time was slapped with the diagnosis of bipolar disorder with psychotic features.

I know upon reflection, this made a bit of sense, as I had definitely experienced deep depression. And I realized that I had also experienced hypomania, too. I had these kind of pockets of periods during my early 20s where I would go off on adventures, traveling or running in the mountains, pushing myself physically and feeling, I suppose you could call it a zest for life.

On the school front, I was just finishing up my coursework and was also wrapping up my practicum working as a research assistant for one of my professors. I absolutely loved the work that I was doing. I was helping with exciting mental health research projects and was even working on my own research paper that would eventually get published.

I graduated that spring of 2016 and landed a dream job doing cancer care research in Toronto. I was thrilled about this and feeling like maybe I was beginning to see a light. So, you know, on paper, it seemed like I was doing really well.

I had just graduated from my second degree program, landed a great job in a city I wanted to live in. I have a loving long-term boyfriend and some close friendships. However, this seeming period of stability lasted less than three months, and that summer my world came crashing down.

I was struggling mentally so much that I had to resign from my new job and move back home. I was devastated. This move back home also coincided with the ending of my relationship.

It was very amicable, but still another blow. I moved back in with my mom and sunk even further into my own head. I saw a psychiatrist a few times and decided to be more honest about all of the symptoms that I was experiencing, and that I was experiencing what I now know were psychotic symptoms on a regular basis.

He diagnosed me with schizoaffective disorder. On some level, this diagnosis felt good to receive, as it felt like a relief that what I was experiencing could finally be attributed to something. However, I was also left feeling lost and scared, as there really are not a lot of success stories being shared about people living with schizophrenia spectrum illnesses.

Almost everything we hear about in the news or in popular media are very negative stigmatized depictions of schizophrenia. This sense of loss was kind of compounded with the fact that I was still getting worse. My psychotic symptoms continue to worsen that fall, and I ended up in the hospital for just over a month this time.

This hospitalization was a truly horrific experience. First of all, I was brought to the hospital in handcuffs from my psychiatrist's office. I became terrified being locked in a sterile white concrete brick room and began to kind of lose my cool.

I was subsequently accosted by hospital staff and tied down by my hands, feet and chest to a metal gurney while they injected me with antipsychotic medication and something to sedate me. This hospital stay only got worse, and one time while admitted in the psychiatric institution, I was dragged into an isolation room and pinned down by six men, both nursing staff and security, stripped naked and injected with medications again. They left me naked in this room that alarmingly had a window in the door, where other patients and staff could walk by and see me naked.

I yelled and pounded on the door for them to give me my clothes back. They eventually gave me a blanket, but realizing that I was now that crazy psych ward patient lashing out was a lot to take in. This hospital stay left me traumatized and with a rather deep distrust of the medical system.

I was finally being treated, though, for the right thing and began to see some slight improvements. The next couple of years saw me kind of float in and out of jobs due to my mental health. But more importantly, I was slowly rebuilding my life in the sense of trying to strengthen relationships, and most especially my relationship with myself.

I put in a lot of work trying to build up self-acceptance and self-compassion and love. I dabbled with dating, but was left feeling less than optimistic because you know, online dating in this day and age sucks. But also I was pretty terrified of being open with potential partners about my struggles and experiences and diagnosis.

And then I met Rob. We seemed to connect with each other on a level that I hadn't experienced in quite awhile. Of course I worried about telling him about my diagnosis and mental health history, but I felt safe doing so with him.

I think I told him on our third date, and he really couldn't have taken it better. He was empathic and really just wanted to learn more. He asked me questions, and he actually hit up the library to find additional resources about what living with the illness meant.

We fell in love with each other quite quickly, and I really enjoyed getting to know him. I moved in with him and his two kids, and we ended up getting engaged the summer of 2019 when I was 27. It felt like things were going really quite amazingly.

I began to question whether or not I really needed medication, so I began to be less structured in taking them. This led me to follow kind of more delusional thoughts about the medications being poisonous, which eventually led me to completely stop taking them. I don't think it's hard to imagine that this didn't end very well.

I became extremely delusional and very paranoid. I ended up in the hospital for two weeks this time. My delusional thoughts had spiraled into full-on psychosis, and Rob, not knowing how to manage things, called the police to take me to the hospital.

Given my traumatic history with hospitals, it wasn't terribly helpful, but it did help to stabilize me back on medications. This psychotic episode and hospitalization felt different, though, because suddenly there was a lot more at stake than just upending my own life. I was now a mom to two incredible young children and felt incredible guilt for letting them down in this way.

There was a lot to wade through in terms of understanding what had happened with their two other parents as well. They brought up concerns around their ability to trust me as a result of me hiding from everyone that I had stopped taking my medications. This was incredibly hard to take in, but I think also kind of helped me to understand my responsibility to do absolutely everything I can to stay as well as possible, if not for myself than for my family, and namely the two kids I now shared responsibility for.

Now, I think it's important to clarify that wellness is not exactly a choice with this illness. However, there are factors that can promote wellness that I tried to adhere to. I focused on building in more routine into my life, which was something upended with the dawn of a global pandemic.

But, you know, I tried to focus on eating well and exercising regularly, nurturing my relationships, and just trying to take care of myself as best as possible. It's probably important to note that during this more tumultuous period, I also needed to take an extended leave from school. I had gone back to university to work toward my masters of science and health policy research.

However, due to various factors, primarily the stresses of this return to school on my mental health, I had to withdraw. Rob and I got married in August, 2020, and a few days later found out that I was pregnant, too. For quite a while, I had felt that I shouldn't have kids, largely due to my illness.

I felt that not only could I potentially pass it on to my child, but that I wouldn't have the capacity to take care of them and be as present as I wanted to be. Some of these fears were kind of dissuaded though, you know, growing into a parental role with Rob's two kids, who were now my kids as well. I discovered new depths of what love can be, and absolutely cherished helping them grow and working at guiding them through life.

Parenting is incredibly hard, and is made harder by my illness at times, too, but I knew that I could do it. And so finding out I was going to have a child of my own was a little scary, but mostly incredibly exciting. Pregnancy was a very difficult experience for me.

It definitely impacted my mental health, and I suppose this may have been compounded by being more isolated due to the pandemic as well. I had initially wanted to reduce and ideally go off of my psychiatric medications entirely when I found out that I was pregnant, but very quickly realized that this wasn't going to be possible. I discussed with my psychiatrist how to reduce the potential risks to the baby due to the medications I was on as much as possible, and we found a medication regimen that worked for me and that I felt relatively safe on while carrying a child.

I gave birth to my beautiful sweet baby boy Theodore on April 12th, 2021. We have spent the last seven months getting to know him as a family and all falling rather smitten with him. Navigating life with two older kids, a newborn and keeping up with life and work has presented its challenges for my mental health.

However, since Theodore was born, I have felt probably the most stable I think I ever have. I've read that becoming a mother can be a protective factor for those living with schizophrenia, and I am absolutely experiencing that. Rob and I started this YouTube channel back in December of 2018, but we have really committed to working on it and growing it over the last year or so.

I think that exploring my diagnosis and my experiences of living with it in this way and sharing about it publicly has been extremely instrumental in working toward a place of more self-acceptance. I feel more at peace now with the fact that I live with schizoaffective disorder, and I feel I have a better grip on it and a better understanding of how to manage it now. I don't doubt that I will experience setbacks and more difficult periods down the line as a result of my illness.

And I definitely am not symptom-free on a day-to-day basis, either. I still experience breakthrough symptoms such as hallucinations, delusions and paranoia. However, I feel a lot more grounded in managing these aspects than I used to.

And for the most part, my medication and self-care regimens really help to keep them at bay, too. I'm glad my story isn't over. There have been so many times throughout my life where I never thought I would say that, but I am grateful to be alive today and to be able to keep growing and engaging with the people and the world around me.

I'm grateful I get to keep exploring myself and discovering who I am, schizoaffective and all. Now, you know, I hate the sugarcoated mental health stories that end with a lovely little bow on top, but I really do want to convey that it is possible to lead a meaningful and fulfilling life, even with a mental illness. There will be ups and downs, as there has been for me, but life can still be full and even beautiful.

So thank you so much for watching this video. If you would like to hear more about my experiences with schizophrenia or schizoaffective disorder, make sure to check out the other videos on our channel and subscribe if you want to keep seeing more. If you'd like to help support the creation of videos like this one, please check out the link to our Patreon page.

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I'll see you in the next video, bye.