Tags
advocacy, hearing voices, learning, lifelong learning., mental health, mental health advocate, mental illness, mentally ill, schizophrenia], stigma, voices, wellness
If you aren’t learning something new every day, you must be unconscious.
It seems like every couple of months I go through a huge learning curve. I went through a big learning curve with the larger disability community about two years ago. I went through a learning curve with Black Lives Matter, and I have gone through several learning curves with schizophrenia, but none quite like this most recent one.
A couple of days ago I watched a whole group of mental health advocates have a “debate” more like a “fight” online. The problem was the term “unmedicated schizophrenic” the term is in a video created by a woman who has schizophrenia. When another advocate saw the video, she took issue with that word choice claiming that it plays into all the stereotypes about hearing voices.
After reading nearly three hundred comments, I am going to say, that in the future I don’t think I am going to use the words, “mental health advocate” to describe my work. It seems that everyone who has a mental illness is now a mental health advocate and unfortunately some people seem to think advocate equals expert. Not only is this confusing, but it can also be dangerous. For those people recently diagnosed who are looking for solid information about their illness, this thinking every advocate is an expert can lead to inaccurate information or even harmful information.
I don’t want to be confused with an expert. I am not an expert. I am one woman who writes about schizophrenia. I write about my life with it, things I see in the news about it, things I see in movies about it, and in the media and society in general. I have experience and opinions. I don’t have research and facts (unless I am quoting someone else).
So, not being known as an advocate is something I am going to work on in 2018. But beyond that, I learned a great deal from the exchange that went on between all of these advocates about the use of the term, “unmedicated schizophrenic.” I learned more about Intervoice, the International Hearing Voices Network (there is a USA chapter). I learned about the blog, Mad in America. And I learned about an organization called, Recovery Learning Community or RLC. All of the websites associated with these organizations are worth your time to check out.
I have known for a long time about people who are anti-psychiatry and also I have been aware of Intervoice since I saw a member’s TED Talk a year or more ago. Intervoice members believe that there are other ways to deal with hearing voices besides psychiatric intervention. Anyone who has been reading my blog for any length of time knows that I am all in with the medical model. I can’t imagine my life without antipsychotics.
I am willing and able to accept that people hear voices differently than I do, though. For me, psychosis (the only time I hear voices) always (I do mean always) leads me down a path where I am a danger to myself. So for me, trying to talk to my voices, getting control over my voices, and the other coping mechanisms described by Intervoice might mean that I die. I’m not joking, and I’m not hyperbolic. I might die by trying something besides medication. Is that worth it? No, of course not.
But, do I find it fascinating that some people can talk to their voices and get those voices to “act” differently? Yes, I think that is remarkable. It leads me to wonder, though do these people have the same illness as I do? (I think they refer to it as a condition and not an illness. They don’t agree with pathologizing the hearing of voices).
There might very well be many reasons people hear voices, and the way I hear them (and all the people I know who hear them have a similar story as mine), might just be one example. I don’t know. (This is also problematic for people who are psychotic and have the symptom anosognosia which is present in severe mental illness and has to do with lack of insight into the condition. In other words, it means the person doesn’t see themselves as sick. I have this symptom when I am psychotic, but not at other times). Suggesting that hearing voices is a normal experience to someone who is psychotic, could lead someone who desperately needs psychiatric intervention away from getting it.
I plan to read more about the people who can interact with the voices they hear and change outcomes. I have always thought that hearing voices was a sign of severe mental illness, but maybe it isn’t in all cases. I’m not one to doubt the experiences of someone else. I know schizophrenia isn’t the same for everyone and apparently, neither is hearing voices. For some people, it appears not to lead to a place of sheer terror or actions that could easily harm or kill the hearer.
I am hoping I never hear voices again, but reading about people that do provides a safe enough distance. Lifelong learning…it’s a real thing.
I think you’re right to view this as a learning experience. I read different views too. I started reading Mad In America, right after I was diagnosed, because I wanted to be at least be aware of the criticisms.
What I found (but I’m no expert), is that both sides over simplify discussions or their point of view, which spreads misconceptions or gives faulty impressions. This happens with professionals even many times. Everything is overall simplified.
But if you read articles, where mainstream psychiatrists address criticisms of their field, I think you’ll discover there is some truths on both sides. Allen Frances, head psychiatrist of DSM 4, has said, “the term ‘schizophrenia’ just describes a heterogeneous set of experiences and behaviors; it doesn’t at all explain them and eventually there will be hundreds of different causes and dozens of different treatments. ‘Schizophrenia’ is certainly is not one illness.”
From my understanding, many of the experts that look at the heterogeneity of the diagnosis believe that, and see the disorder as a placeholder, grouping people with similar symptoms, but no known etiology yet.
It’s often never communicated like this in the doctor’s office—so I think people are often confused why we don’t all find the same things helpful sometimes. And discussions are often very ideology driven when there is still a lot of unknowns.
LikeLiked by 1 person
Allen Frances article: https://m.huffpost.com/us/entry/7000762
LikeLiked by 1 person
Thanks! 🙂
LikeLike
I’ve read a lot about schizophrenia but I have always been opposed to reading outside of the medical model because I know I would be dead without it. Now I am open to reading others experiences just out of curiosity and for educational purposes. I know many things I read will never apply to me (like talking back to voices). It’s all very interesting, though.
LikeLike
I believe in being pragmatic. Pick what works best for you and your life. I do think we become “experts” in our personal life, just not over others.
I am unfortunately still learning what works for me. Medication only reduces my voices, so I still do experience voices on a daily basis. I don’t think that will change for me. And lately, I’ve been needing to explore additional strategies. Jury is still out for me on what helps me cope. I’m currently “coping” as I’m still functioning okay, but I’m not doing as well.
LikeLiked by 1 person
Sorry meant to reply to your comment, but became a new post haha.
LikeLiked by 1 person
Also you might really like this interview:
http://www.collegestudentsuccesspodcast.com/episode-62-interview-with-pat-deegan/
I love sharing it. It’s from a clinical psychologist who was diagnosed with schizophrenia, but I feel she doesn’t advocate a certain approach for everyone, like most. It’s an hour long, so you’ll have to have the time to listen, but I think it’s worth it.
LikeLiked by 1 person
Thanks, when I have some time I will listen to it.
LikeLike
I hear echoes every once in awhile and it really disturbs me (an echo of a voice that is). I have more problems with paranoia, anxiety, lack of motivation and isolation. Let’s keep in touch! I would welcome the opportunity to hear about your experiences.
LikeLike
Yes, would love to keep in touch! I keep following your blog. I heard about your blog through Reddit originally and have loved reading your story. Eventually I might start writing about my story, but I’m still young (in my 20’s) and think I need some more time and perspective.
LikeLiked by 1 person
I’m sure you have plenty to say already. 🙂
LikeLike
I’ve heard the peer support coordinator in my local healthy authority speak about her involvement in the local chapter of the Hearing Voices Network. From what she said it sounds like the local chapter’s approach isn’t anti-psychiatry but instead provide added tools to reframe the way a person understands voices that may persist in spite of treatment. That probably has a fair bit to do with her leadership role in both the local chapter and the health authority. I’ve read that CBT can in some cases be helpful as an add-on strategy to manage psychotic symptoms, and I can see the benefit of having different options available to try as add-ons as appropriate. But when people start throwing around non-medical monotherapies like vitamins/embracing voices/etc for schizophrenia, that just gets frightening and really, really dangerous.
LikeLiked by 1 person
Yes, I can’t say I know much about the Hearing Voices Network…I really don’t. I’m happy to hear they aren’t anti-psychiatry, though. The medical model is helpful to a lot of us. I think there are people who hear voices that might be different than what many of us experience as psychosis. I read that some people hear the voice of their abuser from childhood – that experience sounds vastly different than me believing I am Jesus (I have believed this almost every time I am psychotic). There must be a variety of ways to hear voices and this is what surprised me the most. I’ve just never thought of it as something on a spectrum, but I guess it is.
LikeLiked by 1 person
I’ve been a mental health nurse for quite a few years, and it’s been interesting to see the range of hallucinatory experiences people have. While the majority I’ve come across have been paranoid and very disturbing, I’ve had a fair number of clients with religious-themed delusions who experienced their voices as the voice of God, or grandiose delusions accompanied by hallucinations of the voice of famous people. It’s so fascinating to see what psychosis can bring out. I remember the first time I had psychotic features with my depression I had olfactory hallucinations of body odor – how random. The brain is such a mystery.
LikeLiked by 1 person
I experience olfactory hallucinations on a regular basis which often leads to an episode of paranoia. Yes, it is fascinating.
LikeLiked by 1 person
I heard voices the first time I was psychotic. It is scary,i think the fact I couldn’t sleep for a month did not help any.I do not enjoy being psychotic.I agree with you Rebecca,the medical model has really helped me.As long as I stay on my meds,i’m okay.
LikeLiked by 1 person
I do not have schizophrenia but having witnessed it in my mom throughout my childhood and up until the time she passed away when I was in my 30s I can say that when in a psychotic episode she did not have the insight into her own illness and would put herself in dangerous situations because of the voices she heard. I have heard about the Hearing Voices group and am fascinated by it. I don’t know that it would have helped my mom, who had anosognosia even when she was receiving treatment. Keeping her alive and well was our goal, and we walked a fine line between forcing her to take medication and allowing her to have her own free will. This is the dilemma for those who don’t understand they have the problem. Only when she became a danger to herself or others did my father take measures to ensure she was on medication.
Rebecca, You have been so proactive about your illness and treatment and your diligence is quite impressive, as I know it isn’t easy.
LikeLiked by 1 person
Thank you for your comments and support! 🙂
LikeLike
thanks for sharing this post and insight..great words…xx
LikeLiked by 1 person
Thank you!
LikeLike
Very interesting and thought-provoking. If you aren’t going to call yourself a mental heath advocate can you come up with another way to describe your mission in life?
LikeLiked by 1 person
I’m not sure. I will have to do some thinking about it. 🙂
LikeLiked by 1 person
I remember many years ago in a therapy appointment realizing and learning that hallucinating didn’t automatically mean I was psychotic at that moment. And it was a big turning point for me. It took a big chunk out of the fear. For sure I could be psychotic and hallucinating and was for a long time, but at that point in treatment for me that realization was huge and life changing. I know it’s not true for many people, but for me if I start believing or blurring the line of reality in regards to hallucinations, then I’m psychotic. If I can separate them from reality and not “buy in”to them then I’m not. For me antipsychotics gave me a chance to breathe and shift out of the constant survival battle with my own brain, then through years of therapy learn behavior strategies that are my first line of defense now without medication. Many have a different path. I don’t judge anyone whose is different than mine, nor do I propose my path for anyone else. As with anything I don’t think there is a one size fits all model. And we each hopefully can find what improves quality of life while knowing what helps you might not another, and what helps them may not you.
LikeLiked by 1 person
I try to remind people that I am writing from my personal experience. 🙂
LikeLiked by 1 person
Pingback: Am I a Mental Health Advocate? – The Bee Writes…