A Recovery Blog

This blog is about my continuing recovery from severe mental illness and addiction. I celebrate this recovery by continuing to write, by sharing my music and artwork and by exploring Buddhist and 12 Step ideas and concepts. I claim that the yin/yang symbol is representative of all of us because I have found that even in the midst of acute psychosis there is still sense, method and even a kind of balance. We are more resilient than we think. We can cross beyond the edge of the sane world and return to tell the tale. A deeper kind of balance takes hold when we get honest, when we reach out for help, when we tell our stories.

Friday, June 17, 2011

High Expectations Versus Low Expectations For The Mentally Ill

Thank you for your comments on my last blog entry.  I really appreciate them.

Last week I saw my therapist and I read aloud my most recent blog entry.  Her main response was that I was a "high functioning" schizophrenia sufferer and that my route to recovery is not the way for everyone, especially those who have very negative voices.  I know my way is not the way for everyone.  Everyone of my friends who suffer from mental illness have their own unique perspectives, but I question the routine practice of separating those of us with acute psychosis from those of us who are in some form of recovery from psychosis.  I remember when I was in acute psychosis and couldn't read, write, watch television, follow a conversation or contribute to a conversation because I was so consumed with my voices, delusions and paranoia, certainly not "high functioning" at that point.  Then again, I have heard that there are schizophrenia sufferers who are both acutely symptomatic and functioning adequately in the world.  My basic idea is that schizophrenia and related illnesses go through stages, a pre-psychotic stage into often an acutely psychotic stage into the beginning of several recovery stages, if you are fortunate enough to survive the acute stage.  Within the recovery stage there is still room for relapse, which is why, for most of us, we need to reality check regularly, especially with a therapist and/or a support group.  By simply stating that schizophrenia progresses through stages shows that it is a dynamic, flowing pattern that is not static.  If this model of schizophrenia were scientifically accepted, it would offer hope to people who are severely ill, as well as those who struggle through the recovery stages.

I know that there are people who are severely ill and greatly incapacitated, but I don't believe that they are unreachable and I don't believe that they should be treated as if their condition is permanent and irreversible.  I actually believe that there should be a support group system in place in hospitals and in local communities that generally follow the sponsor system of 12 step groups.  What this would mean is that people who have crossed over into the recovery stages of severe mental illness would sponsor or be a special friend to someone who was still in acute psychosis or in the very early stages of recovery.  The sponsor, based on his or her life experience with psychosis, becomes a guide gently leading the way towards recovery attitudes and behaviors.  It's a simple, beautiful system of community spirit in action, one I wish I had in my community.  As it stands, I get most of my support from my online friends who blog about their illnesses; the problem with that is that I don't get to meet people in my offline community, nor do I get the opportunity to be a sponsor to someone.  And so I write in this blog hoping that someone who is acutely ill will stumble onto it and maybe get something from it.  Maybe they'll stop looking at themselves as if they have an incurable "brain disease" with no cure and dismal prospects.

I see those of us who are creative enough to start writing blogs about our illnesses as in the "high functioning" spectrum.  Perhaps my perspective is skewed by this.  I have not been around people when they've been going through acute psychosis; I've only been around myself.  The people that I've met online through blogging and support forums strike me as intelligent and creative.  I've puzzled over this.  Why do all these people suffering from serious mental illness seem, in a lot of ways, exceptional rather than mentally and creatively low functioning?  I think it is because they crossed a line in their illness which gradually led them into the recovery stages.  Part of recovery is reaching out to others.  The computer is an ideal vehicle for mentally wounded people to express themselves and support each other, though I still think face to face meetings are very important as well.  But who doesn't really get heard?  The people in acute psychosis who don't gravitate towards blogging and online and offline support groups.  The people who remain isolated in their delusions and paranoia.  The people isolated in hospitals, restrained with no computer access.  Because I live in a rural community with no mental health support groups, I don't get to see and interact with acutely ill people and those that I interact with online give me a lot of hope that people can recover.  And yet, my therapist almost dismisses me as "high functioning" and different from other more seriously ill people in hospitals.  I contend that most people who are "high functioning" were at some point "low functioning" and because of that there is an unbreakable bond between those who are acutely ill and those who are in recovery, a bond that should be encouraged to grow through interaction and not separation.  I have had the thought several times that I would like to go to a local psych unit and tell my story to the inmates, but that's as far as I go.  What I really need is for there to be community action that sets up support groups as well as brings people who are in recovery into the hospital system to give hope to those still caught inside their illnesses.

I can respect health professionals who have not suffered from mental illness up to a point, but I still say that those of us who have been through severe mental illness are a way underused resource to the mental health community.  My therapist was a bit upset trying to press her point that I was different from those who had to be hospitalized.  She said she knew because she had worked on psychiatric units and had seen people in the midst of acute psychosis.  I think her view of illness is flawed precisely because she has not lived through acute illness.  I know more about what a catatonic person is going through than she does, even though I have not been catatonic.  I know more about being a raving lunatic because I have been one.  My therapist is a good woman and a decent therapist but I trust my own experience and intuition more.  I told her that I thought it was time that health care professionals raise the bar on mental illness.  Low expectations produce poor results whereas higher expectations give a mentally ill person hope and goals to aim for gradually, over time.  Fewer and fewer mentally ill people are staying long term in hospitals.  Now they are back in their communities (if they are not homeless) which is why community services are so important.  Reintegration into society, however minimal, is a goal in itself and it is possible.  Asserting that a chunk of mentally ill people are too sick to get well is not a good enough solution anymore.

4 comments:

Feminist Voice with Disabilities said...

Kate, I totally see your point here and I agree. I wanted to reach out to people in hospitals, so I had the idea of making resource packets for them, and my local NAMI consumer council and I did this. It had the lists of all the names, addresses, and phone numbers of hospitals, homeless shelters, food pantries, and support groups. We included a brochure where I had written, "we are her to walk with you through your journey of recovery", or something like that. Unfortunately our NAMI group doesn't have the funds to keep printing copies of this packet to give because so many people are in hospitals all the time. But it was an idea. I totally agree that there is a connection between the acutely ill (which I've been too), and the people who are more in the recovery process. Your therapist does not have your experience.

I'm glad your blog is here, because if someone does stumble across it who needs to find hope, you can offer it to them.

Karen May Sorensen said...

Probably the worst off are those with schizophrenia who cannot understand that they have schizophrenia. All the people I've met on line and in recovery groups (except for one - I'll tell you about him) can recognize that they have an illness. But if you don't want medication because you don't think anything is wrong with you then recovery will be hard or impossible.

I remember sitting in group therapy and discussing a patient - while he listened complacently. The therapist explained that he couldn't recognize his illness because of where the illness was based in the brain. It was like, she said, looking in a mirror and not recognizing your face. My friend took medication, and went to groups, because he did recognize that when he didn't take medication he ended up in the hospital - again and again over the years. He had a nurse come to his apartment every day and watch him take his pills, and he called his pills "the silent bullet" because he didn't think they did anything except keep him out of the hospital. He was a very intelligent fellow, loved politics, and remembered clearly being in the hospital and thinking that the CIA and FBI were monitoring his every move. He could remember psychotic thinking, but he could not admit that this thinking was wrong or delusional, and I repeat, he was exceptionally intelligent. He was completely accepting of bizarre thoughts and didn't care whether he had them or not. Of course going into the hospital caused an upheaval in his life and was generally unpleasant and perhaps there was pressure from his family as well to avoid it.

On medication he was very high functioning - volunteering at political candidates offices and working out at a gym, and I have a lovely memory of us deciding that we would both visit our religious institutions together - me a church and him a synagogue, I learned a lot about Judaism from him. He didn't want me to become a Jew like him, he just wanted me to re-connect to the faith of my childhood. Had he been a raving lunatic, what he was off of medication, none of our lovely adventures could have happened. He wouldn't have been embraced by the community. As it was there was some stigma at his synagogue and from his sister, contempt of his suffering and the signs that he was different from others. Unemployment and disability being the biggest curse.

I agree that high functioning people have memories when they were low functioning, or may experience time during the day when they feel low functioning. Anyway, for my friend I just mentioned the only difference between high functioning and low functioning was medication. I bet your therapist in the hospital is meeting a lot of people who aren't on medication. She sees people at their worst. She doesn't follow them after they leave the hospital. She meets many people who don't believe they are sick and once they leave the hospital, they go off their meds. Yes, I've been there. And high functioning or low functioning is merely where you are in time and how you are treating your illness with or without the support of professionals.

All my love,
Karen

Antique and good used furniture........ said...

Well from my point a view. I used to have nightmares so bad I was scared to go to sleep at night. I think everyone should be given hope. A older man told me one time that man can't live without hope. We were walking the jail courtyard at the time. I believe its true.

nancy said...

Kate,

I feel teary eyed after reading this post. I also have seen so many suffering and believe that those of us who are in recovery can help probably even more than a therapist...maybe they are threatened by the fact that we may know a thing or two that they do not.

You know that I have suffered from clinical depressions, so badly, that I tried to end my life many times. When I am our of the debilitating episodes, I am shocked at how depressed I was and how I was thinking. The brain is not a totally understood entity. Whatever the diagnosis, I still prefer the term "emotional challenges" than "mental illness." The reason is that all human beings go through emotional challenges in life. Of course, not everyone ends up in a Psych Ward. Thank G-d not everyone does. However, I have suffered for too long from the stigma of "having a mental illness." Now, the jury is out and they want to say I have "Bipolar2"
All I know is that I agree with you. There should be a 12-Step to recovery for people suffering either Schizophrenia, Clinical Depression, Bipolar and whatever else. A human being is not just their struggle (illness) and dignity and compassion from others is so essential, I think, for any recovery. Thank you for your wonderful heart and mind and blog. I know you have been a great friend to me and I hope that we both can help many people who still suffer and of course, I can not forget the pain I went through and that increases my compassion to help others who are suffering. Love, Nancy