- Hi, everyone and welcome back
to the Living Well 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
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please make sure to check out our Patreon page.
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Thank you.
So I wanted to make this video
because I think that talking about these things
and 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 wanna 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 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 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 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 fear or worry,
having a parent with schizophrenia
does not mean that you are 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 having a psychotic episode
while pregnant or postpartum
or falling into depression postpartum.
So I think again having a plan for if this should happen
and 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 wanna 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 tics.
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 they're distracted by my blinking
and I think that might be early signs of tardive dyskinesia.
So I'm really worried
that 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 of that
but even on this other antipsychotic now,
I still have more blinking than is 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 scary, disorienting experiences
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 stress and worry
and the unknown that it places on my loved ones
and the people around me.
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 too.
So 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,
there's a particular news story that's broken out
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 reading stuff like that in the news
just makes me really fearful of what I might be capable of
when I'm psychotic and I think there is just a deep fear
of the concept of losing control over myself
when I'm going through psychosis
and what that means for what I might be capable of doing
to the people around me are doing to myself.
When I've been psychotic before, I have engaged in self-harm
and so 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 think reflectively
about what I'm afraid of in terms of psychotic episodes
because being aware of that and 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 being in touch constantly with my doctor
when things are starting to go awry
or symptoms are starting to come up more
and just doing everything I can
to stay as healthy as possible.
So along with symptoms, 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 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 while that felt awesome,
I was a little fearful of also slipping further into mania
where it becomes 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.
Not only do I have the bipolar aspect
where you have to worry about the mania
and the depression and whatnot
but also, I think a lot of people who have schizophrenia
are more prone to depression just because of what it means
to have to deal with the illness
and the social implications
and all of that kind of culminates in being more susceptible
to things like depression
and so I've been through depression before.
I know 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 of suicide.
I am a survivor of two attempted suicides
and so 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 wanna talk about
is kind of a social issue wrapped up into
what it means to be living with schizophrenia
and that is around homelessness, the rates of homelessness.
So 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 21.21% of the homeless population
and schizophrenia accounted for 10.29%
of the homeless population.
Schizoaffective disorder counted for 3.53%,
and then psychotic disorders not otherwise specified
accounted for 9% of the homeless population.
So this is a vast over-representation
in terms of psychotic illnesses within a population
being the homeless population
and so 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 journey with schizophrenia
and so that's a fear of mine.
If I ever lose some of my social supports
or my medical supports or my health insurance
and that kind of stuff,
I could very easily fall into dire social situations
like homelessness.
So kind of tied in with this fear around
not having enough supports around me
is the additional fear
of just not having enough social supports
or losing social supports.
So 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 whatnot
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 wanna 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 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 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 I struggle 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.
All right, 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 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 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 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 fears
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
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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 you in the next video, bye.
(calm music)