Schizophrenia As I Live It (audio)

Unveiling Unexpected Allies in the Fight Against Schizophrenia Stigma

• Diana Dirkby

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Discover the surprising ways support can materialize when you least expect it as I, Diana Dirkby, delve into the heart of living with schizophrenia and confronting its associated stigma. Through heartfelt reflections and through observing the likes of Elyn Saks and Michelle Hammer, we unravel the complexities of mental illness and the varied reactions it can provoke. From the unfathomable paradoxes posed by those nearest to us to the resilience required to navigate societal misconceptions, this episode becomes a sanctuary for honest dialogue about the turbulent journey of mental health awareness.
 
 Embark on a storytelling voyage that transcends discussion of the obvious and ventures into the transformative power of fiction to challenge and educate. As we traverse my accounts from academia to community encounters, we expose the unexpected allies who emerge from the most unlikely places—reminding us that understanding and compassion can defy educational and social backgrounds. Join us for an episode that shares the intricate dance of revealing one's mental health struggles and celebrates the strength found in the collective voices calling for a stigma-free world.

Pastime With Good Company by King Henry VIII, played by The Chestnut Brass Company 

Pastime With Good Company, composed by King Henry VIII, played by The Chestnut Brass Company

Diana Dirkby:

Hello, my name is Diana Dirkby and you are listening to my podcast Schizophrenia as I live it. Today I would like to talk about the stigma against schizophrenia or mental illness in general, and I want to stress its randomness, and you'll see what I mean by that as I continue. There are people who live with a mental illness who prefer to hide it from as many people as they can because they don't want to deal with stigma. Some of these people are simply not able to take the stress or the embarrassment, as they see it, of coming out about their mental illness because they don't want to put up with the reaction of other people. On the other hand, there are people like myself and famous examples like Elyn Saks and the wonderful Michelle Hammer, who are very open about their schizophrenia, the symptoms, what they are like, how they cope with them, and they explain in their social media posts and in their writings and so on why that may sound alarming, but in fact, is not dangerous at all. Very few people who live with a mental illness are dangerous. And the way through stigma, I think adopted by most mental health advocates, is through education of people who don't know anything about mental illness. Now, this is an extremely important thing to do and if you are like me and you don't mind sharing your experience with mental illness, I think you have a responsibility to share it as part of educating people in order to reduce stigma.

Diana Dirkby:

However, there is a randomness in stigma. It should be the case that those closest to you, your family and close friends, when they become aware that you live with a mental illness, or if you live with a mental illness, but it gets worse, as it did in my case with my schizophrenia (I describe that process in my book, the Overlife A Tale of Schizophrenia in the character of Sarah, the narrator) should be supportive. But it may happen that someone close to you is simply not prepared to do anything but run away, and in some sense, their closeness makes them more afraid because they view themselves as more accessible to you, more accessible to someone of whom they are frightened because of what they think they know about mental illness. Now, unfortunately, for many people, the sources of what they believe about mental illness rely heavily on the media and on what they've heard other people say about people they know with the mental illness, and I have had people drop me like a hot coal as soon as they realise that I live with paranoid schizophrenia. And some of these people have been family members and some of these people have been close friends, and I find that the closer the person is to you, the more difficult it is to get through to them that you're not dangerous and that you're not going to spoil their life in any way. So it's a kind of a paradox. Some of the people who should know you well enough to support you feel that they know you well enough that you may be a nuisance in their life and they therefore cut you off. Therefore, you should treasure the family members, spouses or close friends who do the opposite, who are supportive. So, in my case, I have a very, very supportive husband and I have some friends and neighbours who are incredibly supportive of me.

Diana Dirkby:

Now, even when people are supportive, they don't necessarily want to know a lot about your mental illness. So it's not a good idea to bombard people with what you are thinking and what you are feeling and what you feel they ought to do about it. It's better to try to find a way that they can share your mental illness but they're not burdened by it. Now, I know that can be extremely hard with schizophrenia, for example, if you're in the midst of a paranoid relapse. The paranoia affects everything and it can be next to impossible to take the feelings of other people into account because your relationship with reality, your reality and hence their reality, is distorted. So I'm thinking more in terms of you know, when you've worked with your doctors and had the support of enough people and do enough work of your own, that you're not actually undergoing a relapse but you're managing your symptoms. That is a very, very good time to look around you and to identify who wants to be educated about your mental illness and who doesn't, because the people who don't are most likely to stay away from you, no matter what you say and no matter what they learn, whereas the people who support you use that information that you give them to find ways to support you better.

Diana Dirkby:

Now, what is the randomness about which I'm speaking? Well, that's one form of randomness. It seems to me quite random in my life the family that has stuck by me and the friends who stuck by me and those who haven't. I mean, I can't really find a common thread that distinguishes one from the other. Certainly, lack of education comes into it, but people with a lot of education have also exercised stigma, even when they know a lot about mental illness. So I found in your really really close circle there's a lot of randomness. Now be grateful for the angels.

Diana Dirkby:

Don't spend too much time lamenting that your brother, your sister, your aunt or your friend from high school rejects you because of your mental illness. Don't spend time on them. Spend time working out how to foster those people who want to be your friend, who want to support you but may still not be all that well informed about your mental illness, and if they're truly friends, they'll be looking for ways to learn more from you so they can support you better. But don't try to define in advance who that will be. It's more random than you would think. Now another randomness that comes in is you can't say the same thing to each person and get the same reaction. Coming out with the bare bones facts about your mental illness, even to someone who wants to be supportive, may not be information that they can absorb without fear of you.

Diana Dirkby:

And another form of randomness I have found is that people who know you, who themselves have had a mental illness or a period of very bad mental health, are sometimes the people who want to stay away from you the most because they tell themselves that they've coped with their mental health problems and they don't want to take on any more, and, in particular, they don't want to take on yours. So you know, the nice conversation that you thought you would have over a cup of coffee, where you discuss mental illness and how you've coped with it, certainly doesn't happen, and I've had that experience a number of times. So you need to adapt your expectations to the reality of a situation, and you need to adapt your talk about schizophrenia and your talk about stigma to the person that you're talking to. Now, if you're posting stuff online which I'm doing, and there are other people doing it. I mentioned the example of Michelle Hammer, who has a fantastic Instagram account. You can post stuff up there that is informative, and, social media being what it is, you don't really have a control over who reads it, or you may have some notion of who your followers are, but you don't really know who it is who was looking at it, and so you may as well make it as factual and as inviting as you can, because in that way, you might get people to listen, and in putting stuff on social media, what people like me most want is for people to listen. Now we may have a business, like Michelle Hammer has her line of clothing and Elyn Saks is a distinguished professor and I'm a newly born fictional novel writer. That business is related for the three of us to our mental illness. But we're not trying to make money out of our schizophrenia. We just have found a way to use what we are as a way to make a living.

Diana Dirkby:

Now, I was for many years in research mathematics, and my mental health problems were of no help whatsoever. So that was a job I had for many years, not related to my mental illness. Unfortunately, as now, there's another example of randomness. You would think that liberal, educated, successful professors, for example, would be people that you'd be able to sit down and talk to about your mental illness, the challenges you're having at work and the prejudice that you may feel. But I have found, unfortunately, that they are not. My success rate with university professors is worse than my success rate with members of my community who may be college educated but work in something much more pragmatic than being a university professor, and so if someone is bigoted, for example, in another way, then that's unpleasant in and of itself and they're not likely to be people that I seek out, and so I won't be worrying about what they think about my mental health, because I probably don't want to see them anyway.

Diana Dirkby:

But some of the more simple people that I know and by that I don't mean something to demean someone, I mean to say that they, you know, have gone to high school, usually gone to college, and then they've gone into something very practical like selling air conditioners or working with computers or troubleshooting various problems for companies, or being a vet or a doctor. I've had a much higher success rate with people who are educated to the level that they need to do their job, but are not educated beyond that. So I'm not saying that you shouldn't encourage your children to be famous academics. Of course, if they have that gift you should. But they need to not overthink mental illness. It's possible to overthink it, and I found that in the overthinking by people who flatter themselves that they're very clever is where I have the problem, because they're thinking in terms of people who do mass shootings, they're thinking in terms of people who are physically violent, and that imagination which makes them so good as academics is the same imagination that goes to these extremes and it's very, very difficult for me, I have found, to tell them that they need not be afraid of that.

Diana Dirkby:

Now, Michelle Hammer again tries in her Instagram posts and in her clothing line to get the message against stigma across. You know, one of her slogans is "I meant to leal, but I don't kill on her t-shirts, and that's a good topic of conversation and that's what she's trying to do. So you know, don't think in advance that if you approach person X and if you say true fact Y, then that will be a good mix. Be prepared for that if you're going forth like I am opting to be completely honest about my schizophrenia, even if I'm writing fiction novels. I mean my book, the Overlife, a Tale of Schizophrenia. The character Sarah, as I've said many, many times, the way she experiences schizophrenia is very close to my experience. She doesn't become a research mathematician, but the schizophrenia part is pretty accurate. And the mother character in the book, Jodie, is how I saw my mother, who also had paranoid schizophrenia.

Diana Dirkby:

So stigma is a rough ocean. It's not, you know, some nice street where you're going to meet people and educate them and they're going to be converts overnight to being fair and being kind and being reasonable with people living with a mental illness. It's a rocky ocean and you have to be very creative and don't waste an angel. If you find someone is interested and does want to know more, don't kind of write them off because they're not your family, they're not your friend yet or they may come from a different intellectual circle or something like that. All these people matter because stigma is there, because enough people believe the wrong thing, and the people that believe the wrong thing come from all walks of life, and the people that are going to support you also will come from all walks of life.

Diana Dirkby:

So that's what I mean by randomness of stigma. Don't try to predict where the battle will end. Just fight the good fight as you go and don't discard opportunities to really win someone over to understanding that most mentally ill people are not dangerous. Some mentally ill people, of course, are dangerous, but percentage wise they're no more dangerous than the rest of the population and that it's something that can be even not unpleasant to discuss. It can be something interesting to discuss and I hope in my book I got that across. So that's all I have for you today. I hope you have a great day and, as always. I thank you for listening.