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May 14, 2024 22 mins

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When I, Diana Dirkby, began my journey with paranoid schizophrenia, the path was fraught with misconceptions and isolation. Today, I share not only my story but also engage with the difficult realities of stigma in mental health. Our latest episode ventures into the heart of these challenges, revealing the intricate dance between misunderstanding and awareness. We traverse the landscape of severe mental illnesses and the importance of organizations like NAMI, shedding light on the potent connections social media can forge. A recent interaction I had serves as a poignant example of the discomfort some grapple with when confronted with mental health discussions, laying bare the urgent need for empathy and open dialogue.

As we wrap up, I’m reminded of the strength found in community and the conversations that bridge divides. Your support as listeners is the backbone of our podcast, and for that, I’m eternally grateful. For those eager to delve deeper, my book "The Overlife: A Tale of Schizophrenia" offers a glimpse into the life shaped by this condition. And for the curious minds, stay alert for the announcement of my second book—an expansion of this narrative that promises to enrich our understanding even further. Join me next time as we continue to champion the cause of mental health, one honest conversation at a time.

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Episode Transcript

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Diana Dirkby (00:02):
Hello, my name is Diana Dirkby and I live with
paranoid schizophrenia.
Today, I wanted to talk aboutthe gray areas of stigma.
Stigma is, of course, a bigsubject and, unfortunately, a

(00:25):
big deal that anyone with asevere mental illness, such as I
have, must confront in theirlife.
The mental health advocacygroups of which I've already
spoken in this podcast, forexample, NAMI, the National

(00:48):
Alliance on Mental Illness,Bring Change to Mind and the
Schizophrenia and PsychosisAction Alliance, are wonderful
sources of information aboutmental illness and severe mental
illness.
As well as that, there areindividuals who have been very

(01:14):
brave and really it's one of thegood byproducts of social media
that they have felt comfortablecoming out with what they
actually experience as someoneliving with a severe mental
illness, be it bipolardepression or be it
schizophrenia.
An example is the wonderfulMichelle Hammer, who I've

(01:38):
mentioned before in my podcasts,but there are many people that
you can find now on social mediawho are talking about what it's
like to live with a severemental illness.
So all of these things are whatyou may call education.
They are raw facts about whatit's like to live with a mental

(02:03):
illness and what it's like tolive with a severe mental
illness, based in science andbased in the experience of
people who are consumers ofmental health.
They are wonderful for peoplewho may want to support someone

(02:24):
with a mental illness or asevere mental illness and simply
don't have enough knowledge toknow how to help them.
They also help the personliving with a mental illness to
understand themselves.
I mean it's great, I find whenyou go on Instagram, say, and

(02:47):
then I read a post and it's fromsomeone who lives with paranoid
schizophrenia and describessomething which is exactly the
same as I've experienced, itmakes you feel supported, it
makes you feel less alone.
So it's all very good forpeople who are receptive, be

(03:14):
they people who know someonewith a mental illness or be they
someone who lives with a mentalillness.
Unfortunately, there are a lotof people who are just nervous
about the whole topic.
So I want to distinguish thosepeople from those who just don't
want to know.
I mean, if you live with amental illness, you have met

(03:39):
someone, either in your familyor in your circle of friends,
who just doesn't want to knowthe facts about your mental
illness, once they learn thatyou live with such a condition.
They just want to minimizetheir contact with you because
they don't want their life to beaffected by you.

(03:59):
There's very little you can dowith such people.
You can try to educate them,but the best thing that you can
do is just to remain proud andnot to let them get you down.
So, between these two extremesof people who are very eager to
have more information, morefactual information about mental

(04:21):
illness, and those who simplywant to run away from it at any
cost, that's what I call thegray area, and there are many,
many people in this gray area.

(04:44):
Now, I had such an experiencethis past week.
As you know, I've written abook called "The Overlife A Tale
of Schizophrenia, and there wassomeone in the town I'm living
in Alaska at the moment who wasinterested in seeing the book.
However, she was clearlyuncomfortable with the fact that

(05:08):
in order to see the book, Iwould have to visit her, and I
live with paranoid schizophrenia.
So there was this kind of veryawkward conversation on the
telephone beforehand when I saidlook, you've expressed interest
in this book and I would liketo actually meet you personally
and give you the book and have aconversation about it.

(05:31):
I had the impression she wouldhave preferred that I send the
book through the mail, let meput it like that.
She was very nervous, but Iinsisted nonetheless that we
made an appointment where Iwould see her in person and I
mentioned to her that, due tothe concussion that I'm still

(05:53):
suffering from, recall aprevious podcast, you know I
banged my head and I have a badconcussion I mentioned to her
that my husband will be drivingme down to see her and I hoped
that that would make her feelthat there would be someone with
me and therefore that I wouldbe in a supportive situation.

(06:17):
Now my husband very wiselychose not to attend the
interview between the two of us.
He said you know you go in andyou do your thing, you give her
the book, you say what you wantto say and you know it's your
deal.
Everything actually went well.
he was very nervous over thephone, but once she actually saw

(06:40):
me and I'd gone to a certainamount of trouble to dress
nicely and make sure that I hada nice slacks on and a nice
shirt or blouse over the top andthat my hair was done nicely,
and I brought with me severalvery positive book reviews about

(07:05):
my book.
I mentioned to her that my bookwas for sale in Barnes and
Noble.
I mentioned to her that I hadself-published the book with the
help of amazon.
com and IngramSpark andtherefore that I had been

(07:27):
working with a lot of people onthe material in the book.
And so she realized, I think,that this book that I've written
was already interesting to andaccepted by lots of people, and

(07:53):
I think that by mentioning allthat, along with just giving her
the book, made her feel lesstense about the whole thing.
I did also mention to her thatit was Mental Health Awareness
Month, and she's a liberal lady.
She likes to think that shesupports minorities, and I

(08:16):
pointed out to her that peopleliving with a mental illness are
in a minority and that themonth of May, our present month,
was a month, at least in theUSA, devoted to recognizing them
and furthering theunderstanding of how they live

(08:39):
and how they can be understoodbetter.
So at the end of the encounterthis lady, definitely in the
gray area, was really happy thatwe'd had the conversation and
was happy to have my book.
And I told her, you know, nopressure, I don't feel you have
to read it all at once, but youknow, here's my phone number.

(09:00):
If you do want to contact meagain to ask me questions about
it or if you know of someoneelse who would like to read the
book, you know you can contactme and we can see about getting
them a copy.
Independently of this, my bookis for sale in the local

(09:26):
independent bookstore in thetown I live in.
There aren't many independentbookstores left in small towns,
but in Homer, Alaska, we have avery good one and my book is
sitting on the shelf there forpeople to buy.

(10:04):
Now, within my family, I havehad the full spectrum.
Within the family that isimmediately related to me and
that is related to me bymarriage to my wonderful spouse,
I have had the full range ofreactions, from complete
rejection to yes, I'm veryinterested to know what's going

(10:26):
on with your mental illness.
But I would say that thepredominant reaction has been in
the gray area of well, you know, I'm very awkward, and have
always been very awkward aboutthe fact that you live with
schizophrenia, but I don't wantto reject you entirely.

(10:48):
I just don't know what to do.
Youdon't don't know how to makesure that I'm not affected by
the bad sides of your condition.
You know, when you have aschizophrenic episode, are you
going to end up on my doorstep,what's going to happen?
I think the most frustratingthing I have found is the lack

(11:11):
of willingness to talk to medirectly.
These family members have morewanted to talk to someone else
in my immediate family, if it'smy immediate family, or just to
my spouse, if it's from myspouse's family.
There's been very littlewillingness to talk to me
directly and even though I amthe best source of information,

(11:39):
they just don't want to confrontme directly.
Now I did try to get aroundthis by writing some emails and
telling them about my book, butthe success rate I had with that
is very low.
And I think you know people areoften very, very hurt that

(11:59):
their family or their family bymarriage isn't more invested in
getting to know them.
But I think the reason is thatthey feel more vulnerable
because they're closer to youand so you live with a condition
that they know nothing aboutand they're frightened that

(12:28):
basically you will destroy thelifestyle that they're very
happy with, thank you.
In my case, you know, my motherlived with paranoid
schizophrenia, so there was acertain amount of understanding
within my immediate family aboutthe condition.
But when it was clear that Iwas also suffering from paranoid

(12:54):
schizophrenia, I met withrejection because they'd had
enough of it.
W ith my family by marriage, itwas completely the opposite
situation.
They hadn't had any contactwith anybody with paranoid
schizophrenia and the only thingthey knew about it was what

(13:15):
they'd seen on TV or whatever,and they were just frightened
that, via my husband, they wouldhave to cope with something
that they'd rather not cope with.
Now, here again, emails and soon from me were not successful,
even though they were goodemails.
But what has worked rather wellis the conversations that

(13:37):
they've had with my spouse,because when his children call
him and ask about him and so onand so forth, they often ask

(13:58):
questions as to how I am, and hedoesn't hold back and he talks
about my schizophrenia and hetalks very honestly about how I
am and he says that you know, mywife is very much in the frame
of mind that she has enoughsupport from me and she doesn't
have any reason really to worryyou or to seek contact with you.
So that's kind of workingrather well.

(14:23):
But I cannot say that myhusband's children understand
schizophrenia.
All I can say is that they havefound a way not to be
frightened of their father'sspouse who lives with
schizophrenia.
It's way, way, way from ideal,but at least it's working for us

(14:45):
relationship-wise.
So you know stigma, even thoughyou may be totally in the right
as a person who is a consumer ofmental health, as we often call

(15:05):
people who live with a mentalillness, even though you may be
totally in the right, you maytotally understand your mental
illness.
You may be in a very goodposition to give accurate
information and to recommendreferences, books that have been
written, people that they canfollow online, and so on.
Some people who know you maysimply not be prepared to go to

(15:27):
the trouble to know you becausetheir overwhelming fear is that
you will impinge on their lifein some way and they won't be
able to handle it.
So you have to lower.
You have to treasure the peoplewho are receptive to a good

(15:50):
education.
You have to identify them andopen up the world of knowledge
as much as you can to people whoare receptive to it.
You have to stop worrying aboutthe people who will never want

(16:11):
to know anything about yourmental illness.
The most difficult and the mostdelicate thing are the people in
between, the gray area, whereyou have to find a way to
communicate with them wherebythey get some information, and

(16:32):
they need at least to feel thatyou're not going to go near them
when they're not comfortablewith it.
You have to be a lot moresubtle and a lot more hands off

(17:03):
and find a way that you cangradually get information to
people in the gray area thatputs them more at ease and then,
if they want to, they willeducate themselves more.
You cannot force it and,unfortunately, you have to be

(17:26):
prepared for disappointment.
I mean, you have to be preparedfor people that you know, but
as soon as the topic of mentalillness comes up, these very
nice people are disappointinglyrejecting of you, and that's
just something you have to havein your arsenal as okay, that's

(17:50):
happened.
Disappointment won't go therefor a while.
Just leave this person aloneand let me get back to the
people who understand me better.
So don't suffer fools gladly.
Don't put yourself in aposition if you can help it
where you're in contact oftenwith people who refuse to

(18:14):
understand you.
You're much better off puttingthat work into the people who
want to be educated and thepeople in the gray area who want
to be comforted and who justwant to know that they can be
part of your life and that theycan handle it.
And that gray area is a two-waystreet.

(18:36):
It involves work on your part,as well as work on the part of
the other person.
You have to get to know theperson in the gray area well
enough to know what you canexpose them to and what you
cannot expose them to, and it'sreally worth putting in the work

(18:57):
, because I have seen with mygray area relationships
tremendous improvement, sinceI've realized that I have to do
a lot of the work and that Ihave to take into account where
they are as well as where I am.
So stigma can be a one-waystreet, great when it is.

(19:23):
Sometimes it's a dead end,which is always heartbreaking,
but very often it's a two-waystreet and you as well as the
person exercising stigma need totravel it.
Okay, that's all I have to saytoday, and, as always, I thank
you for listening, and I do hopethat you continue to follow

(19:46):
this podcast and that you'llgive some thought to purchasing
my book "the Overlife A Tale ofSchizophrenia.
A second book by me is comingout soon, and I'll have more to
say about that later.
Okay, then, thank you forlistening and bye-bye, bye,

(20:08):
thank you.
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