Schizophrenia As I Live It (audio)

The Gray Area Of Stigma

• Diana Dirkby

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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.

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 I live with paranoid schizophrenia. Today, I wanted to talk about the gray areas of stigma. Stigma is, of course, a big subject and, unfortunately, a big deal that anyone with a severe mental illness, such as I have, must confront in their life. The mental health advocacy groups of which I've already spoken in this podcast, for example, NAMI, the National Alliance on Mental Illness, Bring Change to Mind and the Schizophrenia and Psychosis Action Alliance, are wonderful sources of information about mental illness and severe mental illness. As well as that, there are individuals who have been very brave and really it's one of the good byproducts of social media that they have felt comfortable coming out with what they actually experience as someone living with a severe mental illness, be it bipolar depression or be it schizophrenia. An example is the wonderful Michelle Hammer, who I've mentioned before in my podcasts, but there are many people that you can find now on social media who are talking about what it's like to live with a severe mental illness. So all of these things are what you may call education. They are raw facts about what it's like to live with a mental illness and what it's like to live with a severe mental illness, based in science and based in the experience of people who are consumers of mental health. They are wonderful for people who may want to support someone with a mental illness or a severe mental illness and simply don't have enough knowledge to know how to help them. They also help the person living with a mental illness to understand themselves. I mean it's great, I find when you go on Instagram, say, and then I read a post and it's from someone who lives with paranoid schizophrenia and describes something which is exactly the same as I've experienced, it makes you feel supported, it makes you feel less alone. So it's all very good for people who are receptive, be they people who know someone with a mental illness or be they someone who lives with a mental illness.

Diana Dirkby:

Unfortunately, there are a lot of people who are just nervous about the whole topic. So I want to distinguish those people from those who just don't want to know. I mean, if you live with a mental illness, you have met someone, either in your family or in your circle of friends, who just doesn't want to know the facts about your mental illness, once they learn that you live with such a condition. They just want to minimize their contact with you because they don't want their life to be affected by you. There's very little you can do with such people. You can try to educate them, but the best thing that you can do is just to remain proud and not to let them get you down. So, between these two extremes of people who are very eager to have more information, more factual information about mental illness, and those who simply want to run away from it at any cost, that's what I call the gray area, and there are many, many people in this gray area.

Diana Dirkby:

Now, I had such an experience this past week. As you know, I've written a book called "The Overlife A Tale of Schizophrenia, and there was someone in the town I'm living in Alaska at the moment who was interested in seeing the book. However, she was clearly uncomfortable with the fact that in order to see the book, I would have to visit her, and I live with paranoid schizophrenia. So there was this kind of very awkward conversation on the telephone beforehand when I said look, you've expressed interest in this book and I would like to actually meet you personally and give you the book and have a conversation about it. I had the impression she would have preferred that I send the book through the mail, let me put it like that. She was very nervous, but I insisted nonetheless that we made an appointment where I would see her in person and I mentioned to her that, due to the concussion that I'm still suffering from, recall a previous podcast, you know I banged my head and I have a bad concussion I mentioned to her that my husband will be driving me down to see her and I hoped that that would make her feel that there would be someone with me and therefore that I would be in a supportive situation. Now my husband very wisely chose not to attend the interview between the two of us. He said you know you go in and you do your thing, you give her the book, you say what you want to say and you know it's your deal.

Diana Dirkby:

Everything actually went well. he was very nervous over the phone, but once she actually saw me and I'd gone to a certain amount of trouble to dress nicely and make sure that I had a nice slacks on and a nice shirt or blouse over the top and that my hair was done nicely, and I brought with me several very positive book reviews about my book. I mentioned to her that my book was for sale in Barnes and Noble. I mentioned to her that I had self-published the book with the help of amazon. com and IngramSpark and therefore that I had been working with a lot of people on the material in the book. And so she realized, I think, that this book that I've written was already interesting to and accepted by lots of people, and I think that by mentioning all that, along with just giving her the book, made her feel less tense about the whole thing.

Diana Dirkby:

I did also mention to her that it was Mental Health Awareness Month, and she's a liberal lady. She likes to think that she supports minorities, and I pointed out to her that people living with a mental illness are in a minority and that the month of May, our present month, was a month, at least in the USA, devoted to recognizing them and furthering the understanding of how they live and how they can be understood better. So at the end of the encounter this lady, definitely in the gray area, was really happy that we'd had the conversation and was happy to have my book. And I told her, you know, no pressure, I don't feel you have to read it all at once, but you know, here's my phone number. If you do want to contact me again to ask me questions about it or if you know of someone else who would like to read the book, you know you can contact me and we can see about getting them a copy. Independently of this, my book is for sale in the local independent bookstore in the town I live in. There aren't many independent bookstores left in small towns, but in Homer, Alaska, we have a very good one and my book is sitting on the shelf there for people to buy.

Diana Dirkby:

Now, within my family, I have had the full spectrum. Within the family that is immediately related to me and that is related to me by marriage to my wonderful spouse, I have had the full range of reactions, from complete rejection to yes, I'm very interested to know what's going on with your mental illness. But I would say that the predominant reaction has been in the gray area of well, you know, I'm very awkward, and have always been very awkward about the fact that you live with schizophrenia, but I don't want to reject you entirely. I just don't know what to do. Youdon't don't know how to make sure that I'm not affected by the bad sides of your condition. You know, when you have a schizophrenic episode, are you going to end up on my doorstep, what's going to happen?

Diana Dirkby:

I think the most frustrating thing I have found is the lack of willingness to talk to me directly. These family members have more wanted to talk to someone else in my immediate family, if it's my immediate family, or just to my spouse, if it's from my spouse's family. There's been very little willingness to talk to me directly and even though I am the best source of information, they just don't want to confront me directly. Now I did try to get around this by writing some emails and telling them about my book, but the success rate I had with that is very low. And I think you know people are often very, very hurt that their family or their family by marriage isn't more invested in getting to know them. But I think the reason is that they feel more vulnerable because they're closer to you and so you live with a condition that they know nothing about and they're frightened that basically you will destroy the lifestyle that they're very happy with, thank you.

Diana Dirkby:

In my case, you know, my mother lived with paranoid schizophrenia, so there was a certain amount of understanding within my immediate family about the condition. But when it was clear that I was also suffering from paranoid schizophrenia, I met with rejection because they'd had enough of it. W ith my family by marriage, it was completely the opposite situation. They hadn't had any contact with anybody with paranoid schizophrenia and the only thing they knew about it was what they'd seen on TV or whatever, and they were just frightened that, via my husband, they would have to cope with something that they'd rather not cope with. Now, here again, emails and so on from me were not successful, even though they were good emails.

Diana Dirkby:

But what has worked rather well is the conversations that they've had with my spouse, because when his children call him and ask about him and so on and so forth, they often ask questions as to how I am, and he doesn't hold back and he talks about my schizophrenia and he talks very honestly about how I am and he says that you know, my wife is very much in the frame of mind that she has enough support from me and she doesn't have any reason really to worry you or to seek contact with you. So that's kind of working rather well. But I cannot say that my husband's children understand schizophrenia. All I can say is that they have found a way not to be frightened of their father's spouse who lives with schizophrenia. It's way, way, way from ideal, but at least it's working for us relationship-wise.

Diana Dirkby:

So you know stigma, even though you may be totally in the right as a person who is a consumer of mental health, as we often call people who live with a mental illness, even though you may be totally in the right, you may totally understand your mental illness. You may be in a very good position to give accurate information and to recommend references, books that have been written, people that they can follow online, and so on. Some people who know you may simply not be prepared to go to the trouble to know you because their overwhelming fear is that you will impinge on their life in some way and they won't be able to handle it. So you have to lower. You have to treasure the people who are receptive to a good education. You have to identify them and open up the world of knowledge as much as you can to people who are receptive to it. You have to stop worrying about the people who will never want to know anything about your mental illness.

Diana Dirkby:

The most difficult and the most delicate thing are the people in between, the gray area, where you have to find a way to communicate with them whereby they get some information, and they need at least to feel that you're not going to go near them when they're not comfortable with it. You have to be a lot more subtle and a lot more hands off and find a way that you can gradually get information to people in the gray area that puts them more at ease and then, if they want to, they will educate themselves more. You cannot force it and, unfortunately, you have to be prepared for disappointment. I mean, you have to be prepared for people that you know, but as soon as the topic of mental illness comes up, these very nice people are disappointingly rejecting of you, and that's just something you have to have in your arsenal as okay, that's happened. Disappointment won't go there for a while. Just leave this person alone and let me get back to the people who understand me better. So don't suffer fools gladly. Don't put yourself in a position if you can help it where you're in contact often with people who refuse to understand you. You're much better off putting that work into the people who want to be educated and the people in the gray area who want to be comforted and who just want to know that they can be part of your life and that they can handle it.

Diana Dirkby:

And that gray area is a two-way street. It involves work on your part, as well as work on the part of the other person. You have to get to know the person in the gray area well enough to know what you can expose them to and what you cannot expose them to, and it's really worth putting in the work, because I have seen with my gray area relationships tremendous improvement, since I've realized that I have to do a lot of the work and that I have to take into account where they are as well as where I am. So stigma can be a one-way street, great when it is. Sometimes it's a dead end, which is always heartbreaking, but very often it's a two-way street and you as well as the person exercising stigma need to travel it.

Diana Dirkby:

Okay, that's all I have to say today, and, as always, I thank you for listening, and I do hope that you continue to follow this podcast and that you'll give some thought to purchasing my book "the Overlife A Tale of Schizophrenia. A second book by me is coming out soon, and I'll have more to say about that later. Okay, then, thank you for listening and bye-bye, bye, thank you.