My Biggest Fears about Living with Schizophrenia

hi everyone and welcome back to the living wall with schizophrenia YouTube channel in today's video I'm going to be talking more about what my biggest fears are about living with schizophrenia so that should be fun but first if you're new here my name is Lauren and I live with schizoaffective disorder and I make videos about what it's like living with schizophrenia or schizoaffective disorder if you would like to help support the creation of future videos like this one please make sure to check out our patreon page the link is in the description below we're really trying hard to keep creating new resources for you all that that are hopefully valuable to you and we would really appreciate any support you can give thank you so I wanted to make this video because I think that talking about these things and you know bringing them to light a little more around your fears and worries about living with an illness like schizophrenia are really helpful in terms of fostering more self-acceptance in someone who's living with it it also really helps to be more prepared both mentally and literally prepared for if any of these things should happen that you're afraid or worried about or whatnot and building a wellness plan around these fears is kind of a really helpful way to go about it okay so jumping right into my deep fears around living with schizophrenia I think the first one that I want to talk about is one that I get asked about a lot and I get a lot of judgment around and I think I've kind of internalized it a lot and it's become a really big fear of mine and that is around having kids with schizophrenia I'm really worried about what it potentially means being a mother with schizophrenia or passing on schizophrenia to my kids and you know some of these some of these worries have kind of been abated by having two kids of my own now who are not biologically mine but just kind of learning that you know I am capable of looking after children I think that having a really strong support system to do that has been pivotal but I've put measures in place to kind of allow myself to be successful in that arena now I am in the process of kind of talking with my partner about having our own kid and that would mean having a kid biologically and so this brings up some of the fears again around you know passing on my illness to my child and what that would mean for their life now to kind of put my mind at ease about this this fear or worry having a parent with schizophrenia does not mean that you were destined to get it as well if one parent has schizophrenia the child has a 10% chance of getting schizophrenia themself which is for sure higher than I would like it to be but lower than I think a lot of people think it is now around the topic of having kids there's also the fears around you know having a psychotic episode while pregnant or postpartum or falling into depression postpartum so you know I think again having having a plan for if this should happen and you know being really open with your doctor and with your people around you who are supporting you I think is really really important and just ensuring that you have a strong safety net in place to kind of help you deal with this fear okay so the next big fear that I have that I want to talk to you about is around tardive dyskinesia so tardive dyskinesia is caused by prolonged use of antipsychotics which are used to treat illnesses like schizophrenia and basically they are like ticks so like sharp jerky movements that you can't control both in your face and your body now your chances of getting TD or tardive dyskinesia go up the longer you are taking antipsychotic medication and this is becoming more and more of a fear for me in some of my recent videos I've had a lot of people commenting on the fact that I'm blinking too much or you know they're they're distracted by my blinking and you know I think that might be early signs of tardive dyskinesia so I'm really worried that you know I'm slipping into having strong symptoms of TD I was on a medication that made the blinking really really unbearable so I had to switch off that but even on this other antipsychotic now I still have more blinking Bennis typical or more blinking than I normally do so tardive dyskinesia is definitely a fear of mine okay so the next big fear that I have is more so around symptoms of schizophrenia and I'm really afraid of having more psychotic episodes they are really you know scary disorienting it rinses and it's not fun to go through it but I think what's a bigger fear in terms of going through psychotic episodes is the the stress and worry and the unknown that it places on my loved ones and the people around me you know I I am terrified of having to or of putting my partner and my kids and my family and friends through the throes of another psychotic episode on my part because I know it was so hard for them to so you know I'm afraid of the implications of a psychotic episode on both myself and the people around me but also in terms of a psychotic episode you know there is a particular news story that's broken out in my in my local area about a man who did some really atrocious things and it seems like he was having a psychotic episode when it happened and you know reading stuff like that in the news just makes me really fearful of you know what I might be capable of when I'm psychotic and you know I think there is just a deep fear of the concept of losing control over myself when I'm going through psychosis and you know what that means for what I might be capable of doing to the people around me are doing to myself you know when I've been psychotic before I have engaged and self-harm and so you know just wondering how far that might go in terms of psychosis is a fear of mine so now to address this for myself I think that it's important that I do keep these fears at the forefront of my mind and I do you know think reflectively about what I'm afraid of in terms of psychotic episodes because being aware of that and you know keeping in my mind that I value staying away from psychosis keeps me more accountable of taking my medication regularly and doing the things that I know keep me healthy and you know being in touch constantly with my doctor when things are starting to go awry or symptoms are starting to come up more and you know just doing everything I can to stay as healthy as possible so along with symptoms um I have schizoaffective disorder which is a combination of schizophrenia and a major mood disorder and for me it's bipolar and so I also have to deal with things like mania and depression and the mood disturbances that go along with that so I am really worried about mania as well and depression and so mania is kind of like when you have a really really elevated mood and you have basically no inhibitions and um you know you you don't need sleep and you're just kind of running on overdrive and it can be really unhealthy and so I'm worried about slipping into that I went through a period recently where I was probably hypomanic which is the stage like just below mania where you just have somewhat elevated mood and energy and all that stuff and honestly it was wonderful like I was more productive I was happier I was just more engaged in my life in a positive way but you know while that felt awesome I was a little fearful of also slipping further into mania where it becomes you know debilitating and requires hospitalization and whatnot so I was afraid of slipping into that and then the other way also I'm really afraid of slipping into depression um you know not only do I have the bipolar aspect where you have to worry about the meanie and the depression and whatnot but also I think a lot of people who have schizophrenia are more prone to depression just because of you know what it means to have to deal with the illness and thus the social implications and you know all of that kind of culminates and being more susceptible to things like depression and so you know I've been through depression before I know how how hard it is to get through it and so that is definitely a fear of mine of slipping into that now what kind of goes hand-in-hand with that is fear of suicide i I am a survivor of two attempted suicides and so you know that is a fear of mine that that could be something that I feel compelled to move toward again and again I think I'm just taking as many steps as possible to stay as healthy as possible and to be aware of when I'm slipping more towards this depressive side and to be in touch with my doctor and whatnot when I'm feeling that happening but it is definitely still a fear of mine in terms of falling into these extremes of mood now the next fear that I want to talk about is kind of a social issue wrapped up into you know what it means to be living with schizophrenia and that is around homelessness the rates of homelessness so I'm an article done on this was kind of a meta-analysis of all the studies around homelessness and schizophrenia or psychosis and they found that there is a remarkably higher prevalence of psychosis at twenty-one point two one percent of the homeless population and schizophrenia account or accounted for ten point two nine percent of the homeless population schizoaffective disorder accounted for three point five three percent and then psychotic disorders not otherwise specified accounted for nine percent of the homeless population so you know this is a vast over-representation in terms of psychotic illnesses within the within a population being the homeless population and so you know I think it's really important to be aware of the fact that if I didn't have the social supports that I have in place or the medical supports that I have in place I could very very easily have been homeless at any point throughout my throughout my journey with schizophrenia and so you know that's a fear of mine you know if I ever lose some of my social supports or my medical supports or you know my health insurance and that kind of stuff um I could very easily fall into dire social situations like homelessness so kind of tied in with this fear around you know not having enough supports around me is additional fear of just not having enough social supports or losing social supports so when I when I first shared my diagnosis more publicly there were definitely people who kind of pulled away from me and I think that that is a really common experience for people who are living with schizophrenia to have people in their life pull away or be more afraid of them or more leery of them or what not and so that is a big fear of mine in terms of losing social supports because of my illness or because of other reasons or whatnot and I know how important these social supports are to me in order to maintain wellness and to maintain good mental health and so that is a fear of mine that I will lose my social supports for some reason and the last big fear that I want to talk about is around kind of around stigma and social judgment and acceptance so it has been a long long journey in terms of coming to a place of self-acceptance and I'm still not really there I think that's going to be kind of a lifelong journey in terms of coming to a place of of good self acceptance of my illness and of what that means for my life and so I think I think I also kind of I put that difficulty in terms of acceptance onto other people as well and I assume that they are going to have a difficult time accepting me because I'm having a difficult time accepting me and my diagnosis I also am afraid of you know society's X or society's acceptance of me there's a lot of stigma around mental illness in general but particularly around mental illnesses like schizophrenia because I think a lot of people just don't understand it or don't know enough about it and so I think there's a lot of fear or judgment laced around schizophrenia within society and so that is a fear of mine that when I meet new people they will automatically be judging me based on my diagnosis or that if I am going for things like a job or applying to school or things like that that if they find out about my illness they will discriminate against me for that and so that is a big fear of mine now this has kind of been abated in terms of having these conversations with the people that I love and the people who are around me because they are then able to assure me that they accept me for who I am and they love me for who I am and you know I struggle with with self-acceptance around my diagnosis but they are doing a great job of just accepting me for who I am and looking at me as a person beyond my diagnosis alright so that sums up my list of my deepest darkest fears I hope you found it helpful or related to it in some way I think that it's really really important to have these conversations with people around you and people that you trust in terms of what you're afraid of and what is on your mind in terms of living with an illness like schizophrenia I think that this opens up space for more vulnerability which leads to more connection and I also think that it really helps to prepare both yourself and the people around you who may be in a position of support if something goes wrong for when things do go wrong or things do go a little awry or you have more symptoms or that kind of thing there's like this this built-in knowledge around how to approach it I also think that it's really important to strike that fine balance between being aware and prepared and dwelling too much on your fears and I think that it's really important to do the reflective work of you know thinking about and sharing with people around you what you're afraid of and working on addressing that in a healthy way but it's it's it's not helpful to just dwell on those fears and to let them build within your mind and to just make them bigger than they need to be so with that I would love to hear what some of your biggest fear is about living with schizophrenia are please share them in the comments below if you feel comfortable with that thank you so much for watching this video if you enjoyed it or found it helpful at all please make sure to like it and make sure to subscribe to our channel so as not to miss any new content also if you would like to help support the creation of future videos like this one please make sure to check out our patreon page the link is in the description below any support you can give is so appreciated thank you so thank you so much for watching again and as always wishing you and your loved ones good health see in the next video bye [Music]

Channel: Living Well with Schizophrenia

Views: 55,228

Keywords: schizophrenia, schizoaffective, schizoaffective disorder, fears of living with schizophrenia, my biggest fears, biggest fears of living with schizophrenia, living with schizophrenia, living with schizoaffective, living well with schizophrenia, mental health, mental illness, biggest fears of living with mental illness, psychosis, depression, mania, what it's like living with schizophrenia, worst parts of living with schizophrenia, schizophrenia challenges, mental illness challenges

Id: zMK03tFIaIg

Length: 16min 7sec (967 seconds)

Published: Sun Jul 05 2020