Thursday, December 8, 2011

I should not have panicked (but I did)

Or, I could have known sooner, but nobody told me that a schizophrenia diagnosis should not be considered a life sentence.

When Chris was given the diagnosis of doom in Dec. 2003, there was not such a robust on-line community of hardy folk who did not go along with the received wisdom that schizophrenia was a brain disease. Or, if there was such a thriving community, I didn't know about it.

My main point of reference were the doctors whose business it was to believe in the diagnosis. They were a uniformly pessimistic lot. If they actually thought that Chris had a future that didn't involve psychiatric medication, unemployment and sheltered living for the rest of his life, they didn't think to share this information with our family.

My second point of reference were the people who suddenly came out of the woodwork to tell me that their sibling was "schizophrenic," like when you get cancer and suddenly everybody you talk to has had the same cancer. You had no idea these conditions were so prevalent. My acquaintances were all baby boomers, roughly my age, so their sibling was now roughly the same age as us. The conversation usually went something like this:

Me (hopeful): Oh, so your brother has schizophrenia? Will he be flying over here for your third wedding?

They (frightened look, lowered voice):  "Oh, no, he doesn't travel very well. He's been living in a group home near my parents for a number of years now. But (trying to be reassuring), I hear that the medications are so much better these days, I'm sure it will make all the difference for Chris."

My third point of reference was the chat group I joined within the first couple of years of the diagnosis of doom. I began to notice how drugged up its members were. They accepted their diagnosis and they seemed to accept five, six or seven drugs to get through the day as a matter of course.  Many of them were my age and had been this way for years.

Was I right to panic given the dreadful scenario that was being painted by both doctors and acquaintances? I think so. Unfortunately, my panicking caused me to push Chris into activities for which he wasn't ready. My panicking caused Chris to panic, naturally. This retarded his growth. If someone had reassured me that there was every expectation that Chris would resume a normal life if he was left alone for a few years to figure things out for himself, with no pressure brought to bear on him to do things he wasn't ready to do, then I could have relaxed and learned be more philosophical and patient.

Today it's a different story. Thanks to the Internet and the mounting evidence that puts the diagnosis under scrutiny as never before, there is a shared community of people who know there is a better way. There is becoming a shared understanding of what schizophrenia and how to treat it (needed time out for regrowth).

The stupid diagnosis to begin with, and the fixation of the medical community on using drugs as primary treatment, meant the the good news, which was there all along, was kept from many people who could have benefited from it.


  1. Rossa, a timely post on Andrew's 28th birthday. We've come such a long way.

  2. Liz, Give my best wishes to Andrew on his auspicious 1st Saturn return, starting in and around the age of 28.

  3. The conversation you reference -

    "I hear that the medications are so much better these days..."

    Here in the U.S., Catherine Zeta Jones went public to say that she was "bipolar" (whatever that is... a close cousin to "schizophrenia"... whatever that is).

    When asked about her treatment, her husband, Michael Douglas said the same thing, "the medications are much better these days."

    We've come a long way to overcoming the myth with the diagnosis, but we still have a long way to go, both in the MYTH of the diagnosis and the MYTH that the drugs are any better than they were decades ago.


  4. I totally agree. There is a case to be made that the medications were easier to withdraw from decades ago. Sounds like people are repeating what pharma feeds them.

  5. A lot of the people who leave comments here dislike psychiatric labels because they feel like someone else is trying to deny them their reality, put them in a box and judge their every thought and action.

    Don't you realize that you are doing the exact same thing when you insist that people who DO accept and agree with their diagnoses are wrong?

    If Catherine Zeta-Jones says she is bipolar, why don't you believe her? You don't know what she went through before being diagnosed. If she or her husband claim that medications have helped her, why don't you believe that either?

    Here is my reality: my diagnosis was scary and upsetting, but not nearly as scary as the voices I heard. I was SO relieved to know that they weren't real and that I was not in any physical danger.

    As for medication: some of the people who write here act like we who choose to take it wake up in the morning, pop our pills and spend the rest of the day rolling around on the floor, giggling and batting at dust bunnies or something.

    I can and do respect people who don't want medication and find other ways to get better. Could any of you please extend me the same courtesy?

    Drugs may not work for everyone, but they have helped me very, very much.

    That is not a "myth." It is my personal experience. It is my life.

    Medication is not, however, the end of the story. I thought they were at first: that the voices were gone and I was more than ready to live happily ever after.

    But my euphoria didn't last. I still had issues involving childhood abuse, family problems, and my own low self-esteem.

    (Ms. Forbes, you probably don't remember this, but I posted a message here last year and you told me that I was like Chris: someone who was forever apologizing. It was a salient point.)

    My psychiatrist is wonderful. She's the only one who really encouraged me to come out of my shell and interact with other people when my instinct was to crawl away and hide.

    She never, ever discouraged me. She's the one who helped me to regain my fighting spirit and made me pick myself up and try again each time I faltered, NOT my family.

    My parents loved me and took care of me, but they did not expect me to get better. In their day, schizophrenics were tragic, hopeless invalids.

    (At least that was what they thought. I doubt that it was true of ALL schizophrenics.)

    My psychiatrist told them that they were wrong. That it would take time and hard work, but I WOULD get better.

    They needed to hear that over and over again. So did I.

    And I have. I'm not ALL BETTER, and I'm far from perfect, but I'm much better than I was. I'm still working very, very hard to improve my life and to heal from event that damaged me at an early age and made me build my life on a foundation of undeserved guilt and mistaken beliefs.

    My psychiatrist is helping me with this, too. It's hard for me to accept some of the things that happened to me and to move past them and I can't tell you how important it is for me to be able to talk about these things honestly without worrying about bruising other people's feelings.

    I may accept my diagnosis, but that is not all there is to me. None one should be pared down to just a word, phrase, or label.

    I'm sorry this post rambles on so, but no one who agrees with their diagnoses, takes medication or likes their psychiatrists ever posts here and I just wanted to let you know that there are other ways of seeing and doing things.

    My diagnosis was not the end of my life. It was the beginning of my healing process. I would have preferred an easier way, but things went the way they did and I had to take a rough that I'm still on.

    I'm still healing and I'm still growing.

    We may choose different methods and take different paths, but aren't we all doing our best? Trying our hardest?

    I think we are.

    Best wishes and happy holidays to all.

  6. Hi Anonymous

    You are doing very well, there is no doubt about that. I have spent this evening reading parts of many blogs and I came across this wonderful YouTube film. I hope that one day they will show it in schools. Here's the link:

    Louise x

  7. Anon- Think of you and me as two theatre critics who go to see a play about psychiatrists or lawyers (both necessary evils in many people's opinion). I go home and write a very critical review. You go home and write a very positive review. But, you take my review personally and say that it doesn't correspond to your experience with your lawyer or your psychiatrist. In other words, you want me to validate you and your personal experience with your psychiatrist and your choice of meds. I can't do that. It's not my job. My job evolved because of what you say here:

    "My psychiatrist told them that they were wrong. That it would take time and hard work, but I WOULD get better.

    They needed to hear that over and over again. So did I."

    If you read the post, I write that my experience with psychiatrists was exactly what your parents were picking up - their child would not get better. Even that young man in the Youtube video that Louise posted said nobody ever told him he would get better. I'm writing for the people who have had the same experience as I have, and there are plenty of us. The people in my boat have had to put up with decades of negative reinforcement from psychiatry and paid "funded" lies. My son has a good psychiatrist now - I think she's good, I have no idea really if she is or not - but psychiatrists have their own personal agenda, too, and they have the power to be quite dangerous. They have the power to make people dependent on them, and dependency dragged on for too long impedes personal growth.
    So, get out and tell the world the good news, that you are doing pretty darn well and tell the world how you are doing it, but please don't feel you have to justify your personal choice to anyone but yourself. The push back coming from people like me is not a personal attack on individuals it's an overdue and needed overdue attack on the general status quo.

  8. Ms. Forbes,

    My parents did not believe that I wouldn't get better because of anything my psychiatrist said. Psychiatry has only helped me.

    In my experince, it is regular, "normal" people who have been the most negative and discouraging.

    My parents did not know anyone who had been diagnosed with schizophrenia when they were growing up.

    They did, however, know other kids who had schizophrenic relatives and all of them lived in mental institutions.

    The only schizophrenic I knew of as a child was the son of one my brother's teachers. He was never referred to by name, only as "poor Mrs. B's son."

    (I think it's kind of telling that he was "Poor Mrs. B's son, not "Mrs. B's poor son." He wasn't really seen as a person in his own right, he was just a burden that his mother had to carry.)

    Mrs. B's son used to walk around town chain-smoking every day. It seemed like all he did was walk and smoke.

    My parents said they'd never met anyone with my diagnosis who lived a "normal" life. I think that they probably had, but most of us don't broadcast our diagnoses because of the way many people react: with fear and disdain.

    So it wasn't a psychiatrist who made them feel hopeless. It was a lifetime of hearing about people who lived in institutions and people like "Poor Mrs. B's son" who walked and walked but never seemed to go anywhere.

    I also think the media's portrayal of people who are mentally ill, particularly schizophrenics, is dreadful.

    The worst offender is a popular show called "Law & Order" where schizphrenic characters have repeatedly been depicted as murderers and/or suicides.

    Law & Order began its long run when I was still in high school and I have to admit that I didn't even notice how offensive or inaccurate their depiction of mentally ill people was until I had been diagnosed myself.

    So I can see how easily these stereotypes are perpetuated. How can people know anything different unless they are shown something different?

    So my parents just didn't know. But they know now!

    The best thing about your blog is that it does let people know.

    I am sometimes frustrated when people (more often other readers who post here than you) say that my illness does not exist or that medication cannot not help people when it has helped me so much.

    I don't mind when people speak for themselves and from their own experience. I like it when they do just that...SPEAK FOR THEMSELVES.

    Just don't speak for me or for everyone who has my diagnosis. It feels like my own experience and life is being denied.

    Be that as it may, I like to keep up with Chris' progress and some of the methods and ideas that you share have really helped me.

    One of the most helpful things you've introduced me to is the concept of "low expressed emotion." It's not just a useful way for "normal" people to deal with "sick" people.

    I have become a much, much better communicator since I learned this new way of talking to people. People I used to find impossible to deal with really respond well and it makes me keep my own emotions in check.

    It almost always situations from escalating and turning into fights. It keeps the conversation from going off track.

    So I don't want you to feel like I was attacking you, either. I'm glad this blog exists.

    About my need to justify myself to everyone: It came about long before my diagnosis. I grew up wanting everyone to approve of me and everything I said or did.

    It will never happen, I know! But this need for approval still nags at me. It is one of the many things I am still working on but it's so hard to shake off...I've been this way since I was a toddler and it is long past time to grow up.

    Easier said than done!

    Thank you for your reply. Happy holidays to you and your family.

  9. Louise,

    Thank you very much for your kind reply and for posting the link. I will look it up as soon as I can.

    Happy holidays.

  10. Anon - Rest assured, I did not think you were attacking me. You seem like a very genuine person who just wants to be understood. I didn't mean to imply that your parents picked up the negativity from your psychiatrist - what I meant to say was to reinforce the point that you made - most people's experience and knowledge of schizophrenia is like what you pointed out with "poor Mrs. B's son." Most, but not all, psychiatrists, tend to reinforce the stereotype through their pessimism. You have found one who has helped to change your parents's perceptions, which is great. I'm glad to hear that this blog has helped some people to get better, so thanks for the vote of support. You sound very much like Chris, a warm, intelligent person who needs approval. And, of course, all of us need approval, so there is no shame in that.

  11. Anonymous,

    You made some very good points with what you had to say.

    I'm reminded of an old expression: "A pancake, as flat as it is, has two sides."

    I appreciate your reminder that there are two sides to any discussion.


    You made a good point about the need to push back the status quo.... and I agree.

    I'm reminded of how little I know from discussions like this. It's humbling, because I tend to be so anti-psychiatry... Anyway, I appreciate the dialogue, and the opportunity to learn.

    My best,


  12. "If someone had reassured me that there was every expectation that Chris would resume a normal life if he was left alone for a few years to figure things out for himself, with no pressure brought to bear on him to do things he wasn't ready to do, then I could have relaxed and learned be more philosophical and patient."

    Rossa, thank you, thank you, thank you for saying this. Keep saying it in all the venues you can. Do all you can to get this message out. My died at 28 because I did not hear this message. You have stated it so eloquently and succintly. Keep it up! I am cheering you on.

  13. Sooze, heartfelt thanks for your comment!


I am no longer approving comments. All I ask is that you be respectful of others and refrain from using profanity.