What it's like Living with Schizophrenia

my name is Lauren and I live with schizoaffective disorder which is a combination of schizophrenia and a major mood disorder for me it's bipolar I think a lot of people oftentimes are wondering what it's like to live with an illness like schizophrenia and so in this video I'm going to do my best to share what it's like for me to live with schizophrenia I've noticed an increasing trend on Tick Tock where people are trying to depict what it's like to live with schizophrenia but oftentimes these videos are being made by people who don't actually live with the illness and so they're oftentimes not super accurate you know in accordance with my own experience and so I think it's important to hear from people who actually live with the illness about what it's actually like to live with and navigate an illness like schizophrenia so I think to start off with I think it's important to note that I take medications for my schizophrenia for my schizoaffective disorder and so my symptoms are more managed when I'm taking medications and engaging in treatment and whatnot but I do still experience symptoms even while on medication I think that's kind of a common misconception that once you take medication antipsychotics or whatnot you're completely good but I still have breakthrough symptoms even while on medications so some of these symptoms that I experience are hallucinations for me personally what I'm primarily experienced with hallucinations is auditory hallucinations primarily in the form of voices or sometimes just strange sounds that I don't know where they're coming from sometimes I'll also experience olfactory hallucinations so smelling something that's not really there or tactile whose Nations where I will feel things on me or touching me that aren't really there occasionally I do experience visual hallucinations but that's more rare for me and I don't really ever experience taste hallucinations it's primarily auditory tactile olfactory and sometimes visual I think a lot of people wonder what that experience of hallucinating is like and I think it's really important to understand that the hallucination feel very real to the person who's experiencing them it's not like you just see a cartoon walking by and you're like oh it's a hallucination it can be really difficult to separate your hallucinations from reality and it's been a learning curve in terms of learning how to do that primarily what I hear when I hear voices is just kind of when I'm on medication it's just kind of mundane chatter around me and it's hard to differentiate sometimes what I'm hearing from my own thoughts and from my own experience of reality I think in an effort to kind of differentiate I decided to name one of the primary voices I heard in the beginning of my experience of hearing voices I named this voice Jennifer it was a very androgynous voice I didn't really know if it was male or female but Jennifer just seemed to fit and so I use that as a tool to kind of separate the voices that I was hearing from my own internal psyche and whatnot and so so I would think oh that's just Jennifer talking in my head or behind me or from wherever the voice is coming from and I could kind of remove myself from the hallucinations a little bit more and it would be less distressing less um less distracting and it was just easier to kind of be like oh yeah that's just my hallucination that's just Jennifer when I'm not on medications and when my hallucinations are getting really really bad the voices tend to turn more towards command hallucinations so that's when I'm hearing voices telling me to do certain things and typically when I'm not doing well these gear more toward the negative you know side of things and they're more centered around you know commands around self-harm and commands around things like that but again that's really more when I'm off medication and experiencing a really bad episode that it turns to that more kind of dark command who's stations when I'm on medication like I said it's generally just mundane chatter in the background sometimes it will be like commentary on what I'm doing or the things around me sometimes it's just completely nonsensical just kind of words or phrases being thrown about that don't really pertain to anything the smells that I smell so olfactory hallucinations are typically really bad smells that I can't quite pinpoint what they are or where they're coming from oftentimes I just assume I think I stink you know and I get kind of obsessed and self-conscious about that because I think that that bad smell that I'm smelling is coming from me because you know I can't figure out where it's coming from and so I just assume well it must be me to reality check with this I sometimes get my partner to like smell me and let me know if I actually do smell and generally speaking no the tactile hallucinations are typically like like kind of sometimes you'll feel bugs or I'll feel bugs crawling on me or sometimes I'll feel someone touching me somewhere where I know that there's no one actually touching me there this happens a lot more frequently for me for some reason when I'm falling asleep I will feel you know touches on my body where there's no one actually there catching me the visual hallucinations that I experience are generally for the most part more kind of perception shifts so I'm not really sure how to describe that other than it's like I see patterns moving or I see something Sparkle or shine that's not actually sparkling it's just kind of like sensory shifts I guess that I perceive and that's kind of what my visual hallucinations generally are when I'm again off medications or doing really really you know badly and experiencing an episode sometimes I will hallucinate actual people or things like spiders bugs and that kind of thing and more concrete things like that but generally speaking I don't experience these very often another symptom that I experienced from my schizophrenia is paranoia and so this most often presents itself with this feeling that I'm being watched and so I will frequently check mirrors to see if there's a hidden camera in them in them um I will kind of hide from Windows if I feel that I'm being watched um I will hide from doors or make sure that doors are closed and locked if I feel that there is someone there who's watching me and it's just kind of little you know behaviors like that that I engage in as a means of kind of rewarding myself from this feeling that I'm being watched I also sometimes experience paranoia around being followed and so this is kind of an extension of the other one and oftentimes I will get quite paranoid if I see police cars driving around me it's particularly around police thinking that they're going to follow me and take me to the hospital or something like that because I have some trauma around that and so it kind of makes sense that my paranoia kind of molds itself around that narrative another symptom is delusions and this is the one that I think I probably struggle with the most because I find it very very difficult to identify when I'm experiencing delusional thinking you don't typically think that your thoughts are you know misleading you or that they're delusional in nature you think that your thoughts are grounded within you know your reality and their their you you believe your thoughts and so I guess it makes sense that I have a hard time understanding and identifying when I'm experiencing delusional thinking because it's hard to be critical I guess in that sense of your own line of thinking one of the primary delusions that I kind of fall into oftentimes is thinking that my medication is poison or that doctors and Medical Care team members are trying to harm me in some way and that can kind of be an easy thing to spiral into in terms of delusional thinking for me but this delusional thinking can come up in more even just mundane everyday things like I think that my partner is you know out to get me in some Way by you know not being very nice to me it's just like it's hard to describe how engaging with your reality can sometimes get twisted and warped from delusional thinking and it's very difficult to untwist it and unwarp it in order to ground yourself back within reality this is actually something that's really important for me to do with my partner is kind of be checking in with things thinking lines of thinking that I may be questioning or that are causing me to stress or whatnots who kind of have that Reality Checking with him where I can kind of be like does this make sense like and he can kind of come back with well I think you might be a little off in that line of thinking or yeah that makes sense and kind of doing that Reality Checking is really really helpful so hallucination Solutions paranoia are kind of all the positive symptoms of schizophrenia but there's also what's called the negative symptoms of schizophrenia and so with these I experience things like lack of energy lack of motivation lack of concentration um blunted affect is one that I used to struggle with a lot more but I do still struggle with frequently as well I think if you go back and look at some of my earlier videos you will definitely see how blunted my affect was in those videos and blunted affect just means that you aren't expressing much emotion and it's just kind of flat presentation and that is definitely something that I do still fall into if I'm struggling a little bit more but generally I think I'm a little bit better at emoting now that has partly to do with the fact that I was on different medication a few years ago when I first started making these videos that really really flattened my affect even further than just the schizophrenia did I also struggle with executive functioning what I mean by this is that it's really really difficult for me to see something and understand that whatever needs to change with that thing requires action then following through on that action those steps and connections that you make in your mind are really hard for me to do and to follow through with carrying out those steps is really hard I think a lot of these negative symptoms look a lot like depression and so you know I had these symptoms first and so that's why I was initially misdiagnosed with depression and bipolar and then finally schizophrctor disorder and I guess this gets affected disorder also plays an extra role in terms of what I have to do to manage my illness because it brings in the mood disorder component as well so I also deal with things like Mania hypomania and depression I don't experience me Mania very often that's usually when I'm quite unwell but I do experience hypomania pretty frequently and hypomania is just kind of that step below Mania where you have really elevated mood energy you know you start tasks and maybe don't always finish them but you are really motivated that actually feels really good when I'm in a period of hypomania and I think a lot of people feel that too where they kind of enjoy hypomania but that's not to say that it doesn't pose its own problems as well in terms of being able to function effectively in your life and then obviously the depression side of the mood component is difficult to deal with as well and kind of a lot of what I already talked about in terms of negative symptoms is a lot of what I experience with depression too but added on top of that is kind of oftentimes suicidal ideation and and feeling like life's not worth living and those difficult you know those difficult thoughts and feelings are a part of it as well another symptom of my schizophrenia is disorganized thinking or you know racing thoughts this can be a kind of a difficult one to manage and navigate as well because it's very hard to effectively participate in the world around you and with other people and whatnot when your thoughts are just kind of out of control racing in your head or are really disorganized and kind of discombobulated in your own head so when this is happening I try to implement some self-soothing techniques and strategies and one that really works well for me particularly when I'm experiencing these racing thoughts or disorganized thinking is moving my body so getting some form of exercise I really love to run and so that's kind of something that I turn to when I'm having a difficult time with really any of my symptoms but especially the racing thoughts I think something that's not talked about enough when people share their experiences of living with a mental illness like schizophrenia is how difficult things like self-care can be and just keeping up with daily hygiene just getting out of bed showering getting ready brushing my teeth brushing my hair getting dressed all of those tasks can feel really really big and daunting when I'm you know struggling with my illness and so I kind of have to be a little proactive in terms of planning my day around my capacity and what I can you know exert myself on and prioritizing these you know things that are really taking care of myself and taking care of my hygiene I think it's important to understand that schizophrenia is kind of a cyclical illness and what I mean by this is that you go through periods of Wellness ideally hopefully and periods where you're struggling more with symptoms or you know relapsing or whatever you want to call it and so for me personally it's been kind of an ongoing Journey around balancing my medication um with how I'm doing and so very frequently I'll be titrating or adjusting doses with my psychiatrist for when I need a little bit of extra you know support through medication or when I'm feeling like I don't need as much or maybe sometimes I feel like the medication is not working for me anymore and I need to completely switch it's kind of this ongoing Balancing Act dancing act with my psychiatrist about figuring out what the best treatment is for me at any given time I have been on I don't even know how many different kinds of antipsychotics mood stabilizers it's just kind of an ongoing learning process of figuring out which one works best for you and you know navigating the changes in that as well I think another thing that's important for me to share while I'm sharing you know what the experience of living with schizophrenia or schizophren disorder is like for me is to understand that I am in a place of General Wellness right now and it's taken a lot of work and whatnot to get to this and kind of luck as well to get to this point but there have been periods throughout my illness where it has been way more difficult to handle and to manage and it's felt almost unbearable at times to navigate living with my illness if you have this illness and you are having a really really difficult time it's okay you know there are other people who are experiencing what you're experiencing as well and not everyone's experience of this illness is going to look the same and especially not at all points in their journey of recovery with the illness so this has been kind of a brief overview of my own experience living with schizophrenia if you want to learn more about anything that I mentioned in this video make sure to check out our other videos on our Channel where we go into greater detail about all the things that I've talked about in this video and more if you'd like to support us in creating this content make sure to check out the link to our patreon page in the description below once you become a patron you also gain access to our online peer support Community which is geared toward people who are living with a schizophrenia Spectrum illness and also their loved ones if you're looking for a little bit of additional support through peers it's a really really great resource to check out so if that interests you make sure to check out our patreon page or if you just want to support us in creating this content make sure to check out our patreon page as well thank you so much for watching and as always wishing you and your loved ones good health we'll see in the next video bye

Channel: Living Well with Schizophrenia

Views: 55,097

Keywords: schizophrenia, schizoaffective, schizoaffective disorder, mental health, mental illness, difficulties with schizophrenia, challenges with schizophrenia, coping strategies for schizophrenia, coping mechanisms for schizophrenia, living with schizophrenia, living with schizoaffective, living with schizoaffective disorder, daily life with schizophrenia, antipsychotic medication, psychotic, psychosis, delusions, hallucinations, paranoia, negative symptoms, positive symptoms

Id: PzdQWif8c1E

Length: 16min 21sec (981 seconds)

Published: Tue Nov 08 2022