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.

Tuesday, April 10, 2012

Parallels With My Anti-Psychiatry Peers

I have come upon the anti-psychiatry movement late.  I've only just started reading some blogs about it.  There's a lot of outcry about the perils of being medicated, some of which I certainly sympathize with, but what I was really looking for was a list of alternatives to taking the medications.  I just found one large site with lots and lots of information on it, it's called Beyond Meds: Alternatives to Psychiatry.  I've only read a bit of it, but plan to return and continue my research.  I was fascinated to find that I have been going on a parallel course because some of the alternatives that are suggested are Mindfulness, Meditation, Yoga and viewing one's illness as actually a psycho-spiritual journey.  On one of the sites that I stopped at they even were pushing books by Adyashanti!  I also read an article by a woman who suffered from Bi-Polar disorder who came to embrace Tibetan Buddhism and mind training, while working in a peer-run support group and not taking the medications.

In terms of spiritual orientation these anti-psychiatry people appear to by "my" people.  I certainly do accept them as such because we have been to the same hard places.  And I am all for exploring alternatives to the medications.  If people don't explore, they will never find ways to develop better treatments to complex psychotic illnesses.  And without exploration, there's not even the possibility of discovering a cure.  It seems more and more likely that community outreach programs and peer run support groups will be the wave of the future.  God, I hope so.  I know I was meant to be a part of a mental health support group.  The great thing about support groups is that everyone is welcome from the acutely ill to those in partial recovery to those in full recovery.  There's so much we can learn from one another, but we have to get into each other's hearts and minds and learn how to be there for each other.

I want to believe that following a spiritual path of being Mindful and training the mind to study itself without judgment could help to treat acute psychosis.  I want to believe the same for Cognitive Behavioral Therapy and peer run support groups and diet, nutrition and exercise programs, but I honestly don't know yet.  Maybe individualized combinations of treatments could really address the core symptoms enough to treat acute psychosis without medication or with medication at a very small dosage.  All I know is that people need to get organized and that's what the anti-psychiatry movement appears to be doing, working both in communities and online.  I know I need the help in my community;  medication and individual therapy have not been enough for me -- I need to meet peers face to face.  I've felt frustration about this for so long and disappointment in myself for not having the courage and stamina to start up a support group in my town.  I'm hoping this will change this year. I talk a good game about peer support because I got so much out of going to the Al-Anon group, but the group is just not appropriate from people with psychotic disorders.

And I do use the word "psychotic" and "disorders" as well as the word "schizophrenia" because I do see the phenomenon of psychosis as an expression of imbalance and illness, though I know it can be a means to personal growth; it can also lead to suicide.  As I wrote in my last post, it is the people in the thrall of acute psychosis who most concern me and that is why I still believe that medication should be an option at least for a period of time.  At the same time, I'm all for engaging individuals in various forms of treatment in addition to the medications.  Build a support network, and work on your own, too, while taking advantage of what the medications can do for you and then decide whether to continue with the medications or not.  The medications are imperfect; there's no doubt about that, but it's important to use as many options as you can, especially when you are suffering so much.

If I find that there are viable alternatives to medications, ones that really work to treat psychosis, I think I might consider reducing my medications, mainly because I'm on high doses and have been for 10 years and I don't know if that's good for me or not.  I'm still afraid of falling back into acute illness.  Most of my days have challenges in them.  I am not recovered, but I will continue to wave the flag of RECOVERY for any newcomers.  Recovery, in all its forms and gradations, is possible.  That's very important to realize.  No matter how bad it gets, and it can get pretty bad, you will not be stuck in a hellish place indefinitely, but you do need to motivate yourself to reach out to others, to share your story and to do what you need to do in order to take care of yourself.

The most important point I can make here is that we, who have suffered from psychotic disorders, are all peers regardless of whether we take the medications or try an alternative route.  We need to stand united or at least make bridges to meet each other across the sometimes great divide.  I deeply appreciate people on both sides, but really, we are the same with similar stuggles and successes.  Today I read a blog entry by Charles on his blog Mental Health Recovery and in it he writes about how you have to let go of blaming in order to recover and to "be positive in the face of negativity".  I think we've got to work to understand each other better and learn to be extremely tolerant of just those people who cause us to feel self-protective and defensive.  Check yourself out and see what you find.  I find the problem is usually within my own self and that I have a lot to learn from different people and points of view.

6 comments:

Chris said...

Hi Kate,

I'm not impressed with beyond meds, the woman is not doing too well. I was on a woman's blog three years ago, she was self-tapering off Abilify and started to hear voices again. Rather than go back to taking the medication that would allow her to be symptom-free, she chooses to hear voices. That's the real looney-tunes.

I'm not impressed with the crowd that lives their life "in reaction against" a diagnosis when the goal in recovery should be "moving towards" wellness and not "away from" illness.

Like the title of the book defying mental illness, it's all a reaction against mode instead of making peace with your diagnosis.

Every person I know who went on a drug holiday got much worse than they were before, even those who tapered off the allegedly correct way.

With all due respect to you Kate, and to others, I will however honestly say that if I weren't taking SZ meds I would've not ever obtained a Masters degree and been able to work three jobs. Yes, I have three jobs at a time when in this hard economy people have been out of work for longer than a year and some of them lost their homes too.

The anti-psychiatry crowd can be proud to be mad, or else be proud not to be mad, either way, I've seen the best minds of my generation destroyed by going on drug holidays.

The prevailing wisdom is that with each repeated episode, it gets harder to return to your prior level of functioning. That's no joke.

Would you really want to hear voices if you didn't have to? I have no symptoms, and I have no side effects from the medication. Miraculously, the medication enabled me to wake up two hours earlier every day, if you can call that a side effect. I adjusted the dose, and the only troubling side effect I did have went away.

Regards,
Chris

Karen May Sorensen said...

Dear Kate,

Last week my therapist said something that made a big impression on me. He believes in spiritual psychotherapy.

He said, in effect, that my illness wasn't Plan B. So this week, while I lie in bed exhausted (I know its all negatives symptoms in my mind) I say to myself, Karen, this is Plan A. This is the way your life was supposed to unfold. There was no alternative "me" who didn't get schizophrenia.

Its really difficult to say to yourself that you are exactly who you are meant to be. I think its an attempt at grounding yourself in the here and now. But trust me, I've never had a therapist who accepted my illness as much as this one, who believes so deeply in the me that is separate from the illness. He says that that the real me isn't mentally ill. I think of all the other therapists who look at me and think "sick, sick" and I know it was poison to take their image into myself and flog myself with thinking "sick, sick".

You mentioned in your last post, or the one before, that your therapist wanted you to know that you were essentially good - I think that is an eastern religious concept that my therapist too is trying to get me to understand. He says it a lot, that the core of me is good and healthy.

I think the therapists that have a deep training in eastern religions have more to offer than the therapists that have no deep beliefs toward anything other than psychology.

In recovery I've met people who stop trying to kill themselves because they have taken up with a religion. Thats really something.

You and I are really lucky we have therapists who have a personal spiritual perspective.

By the way, instead of just reducing meds, have you ever thought about trying Geodone? Its a weaker drug than most antispychotics, but it doesn't have the same weight gain effect. I say this because that made the major difference for me and my physical health, switching from Seroquil to Geodone. I was able to exercise and loose weight. And not over eat. Just a bug in your ear, since you are thinking about some sort of change. It would be the most mild, substituting one med for another rather than coming down on meds. Although there might be a med reduction during the switch. And because like I said Geodone is weaker, there is the risk that it won't work for you, same risk you run of returning tormenting symptoms on a lower dose of what you are taking right now.

All my love,
Karen

Karen May Sorensen said...

Dear Kate,

In opposition to what Chris said, you've seen me do better on lesser meds. Way less meds. And I don't think its looney-tunes to hear voices. That's just a part of your mind to make friends with, as long as it isn't tormenting yourself. Mark Vonnegut, Kurt Vonnegut's son is a doctor and he hears voices. I found this out reading his last book. He's a good doctor and affiliated with Harvard, he helps the school pick out students for their medical school!

Mark Vonnegut doesn't mind that he hears voices and has a full life despite which. He doesn't try to drug himself to the gills to cut off this special part of himself, although he is on some medication to control bi-polar swings.

Currently my therapist is working with a patient to help them manage the voices they hear - to distance themselves from it. My therapist can't prescribe meds so this is the approach he's using for the problem. You heard voices for years before you had the initial schizophrenic onset, didn't you? And you weren't looney-tunes.

Whatever happens should you lower meds is totally personal to the person you are. My friend Rocki is paranoid schizophrenic and hears voices, yet demands a lower dose of meds because this makes her feel the best, and think the best. She's really happy with the way she thinks on less meds, even though she is more symptomatic. Trust me, her therapist is always trying to get her to take more meds due to the strange things she talks about. But she is happiest being a little crazy.

Strange, eccentric, crazy, and not working are not reasons to discount the worth of a person or even perhaps the right reason to go on meds. In one past blog post Chris said that most schizophrenics she knows works, I posted a comment that about ten schizophrenics I know don't work or at least two of the ten work part time at menial jobs, and she deleted the post. Doesn't want her world view challenged.

I think the term "drug holiday" is a bad term because it doesn't give justice to the weight and importance of trying to live with less meds. It sounds like something that is fun, or frivolous, while the decision you are contemplating is not. Its a scary idea to a person who has reason to fear their illness, trust me, I've been through it.

Just as every mind is unique, every person's illness has a different course and we all make very personal decisions as to what makes us feel most human. Chris has made it clear that what makes her feel most human is earning money, getting degrees, and working full time. None of this has much hold over me, you know this. I think that the artwork I do counts as working, but it is a very personal and private sort of work. More to my mind as my own challenge to my brain, as I love challenges.

I'm going to stay at the dose I'm on for a year before trying to lower it any more. I want to be certain of my stability, it is such a shock to me. And no doubt, to my years of a medicated brain, a shock to the living, bloody tissue as well.

All my love,
Karen

Unknown said...

I don't think people should have to choose between meds or holistic therapy. I've always thought either extreme to miss the point of the other. Take meds, do Yoga, get a massage, exercise, take some supplements...why should one negate the other? Maybe a combination will allow for lower doses of antipsychotics in some people, maybe not. Who cares?
Do what you need to do to be the best you you can be!

Feminist Voice with Disabilities said...

Kate, I respect your right to see the viewpoints of people who are in the antipsychiatry movement as valid. But I have said on my blog why I disagree with them. It isn't that I just discount their views without ever looking into it, though I admit I do vehemently disagree with their stance. I just know that everybody I've known who got better from psychosis did it on medication, and nobody I've known, personally, was able to get better without it. And I know that if I was without it, I wouldn't be in college, or working part time or have a roof over my ahead or be able to protect myself from the sexual assaults and suicide attempts that happened when I was psychotic. I'd be dead. So for me, it is a real matter of life versus death. And I cannot risk trying life without meds when it comes down to life versus death. If it works for someone to live without meds, then obviously they have a right to do that. I just don't appreciate their constantly preaching that medication is evil. Nobody tells cancer patients chemotherapy is evil, because even though it kills their cells it saves their lives. I've had plenty of side effects to meds, but I am grateful to have meds. For some of us it really is a matter of living versus not living. Just my two cents!

Take Care~
Jen

Beyond Meds/Gianna said...

Hi....I've not read all the comments here, but I did want to say I've never called myself anti-psychiatry. I am critical of psychiatry. I am also deeply pro-choice.

The first comment is wrong. I've never heard voices, nor have I ever taken Abilify. I am physically unwell now but my mind is now clearer than it ever was while I was medicated.

I don't have the energy to read the rest of the comments as, yes, I am sick as a result of the toxicity and it's late right now for me...I need to get to bed.

the only thing I attempt to do on the blog is educate people about the very real fact that many people do heal and move on from diagnosis even when they've been told that they cannot. Even when they're told they need drugs for the rest of their lives. See the Recovery section...there is a section with multiple stories of such recovery from psychosis and schizophrenia labels too. (see the top of the blog there is a drop-down menu)

I certainly do not pretend to know what is correct for any given individual. And believe that only the individual has the right to decide that for themselves. Hence I am not anti-anything. I am pro-people.

I do know that many people have my experience though, of having been harmed by drugs.

I also know many who feel grateful to have found meds.

peace to all of you.