http://www.crazyboards.org/forums/index.php/topic/45366-schizophrenia-pyschosis-and-recovery-psychological-approaches/page__gopid__473258
I was banned from that site after I posted this link: Schizophrenia & Hope. Apparently, I went too far with that one.
Meantime, I've seen that kind of behavior before, in other communities. I do tend to take notes on such things because, to me, the way people are treated is a very good marker for how healthy the community is. Moderators set the tone for the community standards so when you see moderators and admins resort to that kind of behavior... you know you've got a very unhealthy environment on your hands. Reactionary. Fear-based. Highly controlling. I don't function well in the vicinity of such people so it's just as well that we quickly parted company.
I did manage to make a few posts in their Book section where someone had asked about Jung's Red Book. I even quoted John Weir Perry...
85% of our clients (all diagnosed as severely schizophrenic) at the Diabasis center not only improved, with no medications, but most went on growing after leaving us.
- Dr. John Weir Perry
I can only presume the moderators haven't discovered it yet. They don't seem to be very comfortable with the idea of recovery.
Also, my posts on Open Dialogue Treatment were put back in place but that was after my other posts were modified, that was after links to my personal experience were removed for "advertising, being spam and self-promotion". That was after the members and mods decided to have a go at me.
Meantime, in the "putting back" it would seem that a number of the links to studies about Open Dialogue treatment were disabled and the mod who sat on those studies, who openly praised one of the abusive members for their behavior, they followed it up with a notation that 73% of all people recover from psychosis and therefore, Open Dialogue's recovery rates of 80% to 85% of people back to work, back in school, no further episodes of psychosis, the reduction by 90% of schizophrenia in their region with only one third of them ever having made use of neuroleptics... all that was not only unremarkable, it was the equivalent of snake oil.
If I'm angry, it's not just because of their treatment of me it's because their behavior reflects the behavior of many others, a fair number of them professionals. They honestly believe that stripping people of hope is a compassionate action. They honestly believe that no one can ever recover or successfully function without medication. And they will stop at nothing to try and ensure that no one ever hears about people who do. They can't do it, of course. Not with the internet. There's too many people out there now who have.
Meantime, I do talk to an awful lot of people and I'm not shy about being honest about my experiences. I share. The good, the bad, and the ugly. I will never be referring anyone in recovery to that site or any caregiver. I don't believe people can get well in abusive environments.
In a separate discussion an observer noted: Its not like you had an agenda to get anyone to stop taking their meds.
I responded: I don't need an agenda. People take meds because they self-identify them as helpful. They stop taking meds because they don't identify them as helpful. They might be right or they might be wrong but they also tend to make their own decision. Harp on them too much and they just go away and do it in secret. Support them and not only do you help build trust, they'll be more open with what's happening for them. That means, their support people will be better able to move in fast if necessary.
There was someone who posted to that thread noting that they had given up their meds just a few days previously. My comments to her were still there last night, I don't know if they've been removed since. The link I posted however, that was removed and a moderator's comments added that implied I actively encouraged her to come off her meds. I did no such thing. She came off them four days before I arrived. What I did do was try to encourage her to make an informed decision.
The link I shared was this one: Matters to Consider When Reducing or Coming Off Medications. It opens with this argument...
To my mind, medication is a tool but it's not the only tool. The question we have to ask ourselves in regard to any form of treatment (medication or otherwise) is, "Is this helping me? Am I getting better?"
Many people identify medication as something that helps them but even those who find it helpful don't like to take it. They only do so because it makes their life better, more tolerable, more managable. This is true in spite of whatever side effects may be present. Other people do not find medication to be helpful or the burden of the side-effects outweighs the benefits. These people may find it beneficial to consider taking a different medication or to try withdrawing from that class of drugs entirely. To help you determine which avenue might be best for you, you could try asking yourself these questions...
- Do you understand why you have been prescribed your medication? (What is it supposed to do for you?)
- Does it have any positive effects for you? (Is it doing what it's supposed to do?)
- Does it have negative effects? (How is it not helping you?)
- What alternatives might be available?
Whenever people are investigating medications I like to encourage them to look at medically oriented sites and consumer based sites because this can provide a bigger and more complete picture than only one perspective. Here's two links to get you started:
- Medically Oriented Site
- Consumer Oriented Site
Exploring your answers to the questions above can help prepare you for meeting with your pdoc and discussing the issue with him/her. I suggest that for now, you continue with your medication as prescribed but start researching and exploring your alternatives. By the time you're finished doing that, you'll probably have a better idea of what treatment options might work best for you personally.
That's not quite the stirring speech to get people off their meds that the mods implied.
The truth is, people are going to experiment with their meds. In the process of doing so, they often learn some important things about them such as the degree medication might be having on their function, whether or not they truly need to be making use of them, whether they might function better with a different med in the same class, or a med from a different class entirely, and whether or not they can function well with less of them or none at all.
I encourage people to do their research so they don't set themselves up for failure. Coming off abruptly is usually a pretty good way to do that. I also believe that people benefit from support when they're attempting to make a med reduction or a withdrawal. I suspect that some folks, when they withold that information are deliberately doing so because they know a recurrence is more likely to be triggered with an abrupt withdrawal. In other words, they want the other person to fall. I want them to get safety nets in place before they even try to make the leap. This may be an indication that I am, indeed, the Anti-Christ.
About five years ago, I ran into two psychiatrists in the online environment. This was what they had to say to me...
Psychiatrist #1: On behalf of my profession, I do say that psychiatrists are the most gifted of physicians. In no other branch of medicine is the chief complaint so cryptic such that the physician has to start completely from scratch. Often, when a patient is unable to state their chief complaint and there is no one to state it for him, the patient is passed off as crazy, and sent along to psychiatry to figure him out, or he dies.
Psychiatrist #1: If the person can be cured, then it is NOT schizophrenia. Schizophrenia is a chronic mental illness that has no cure.
Psychiatrist #2: I personally think it is far more ethical and kind to allow patients to know the truth about their illness; that it is indeed incurable, but that it can be successfully managed and allow for a normal life, rather than feeding them some bullshit false hope that one day they will be cured.
What's the difference between cured and recovered? I don't know. You'd think someone would have come up with some defining criteria by now but apparently, no one can ever really be considered fully recovered.
The suicide rate from schizophrenia is highest in the year following diagnosis. Young men are more vulnerable to take their own lives. You would think that the suicide rate might actually decrease because people are finally getting treatment but instead, it spikes up. I honestly believe that this is a direct result of the attitude of those around them.
People are told, over and over and over again... You can't get well. You can't get well. You can't get well. You have a disease. There is no cure. Is it any wonder that, when faced with that kind of hopeless, dismal message, some people might choose to opt out of life entirely?
There's a lot of reasons why I do what I do. But part of putting my face out there is so that others can hear a bit of a different message for a change. Because I know that people need to feel there is a reason for hope. In the process of putting myself out there, I encounter a lot of attitudes like the one espoused by those psychiatrists, or those mods at crazyboards.
A friend sent me copies of the thread. In reviewing it, I felt I understood a little better what had happened.
It began when that moderator edited my original post to remove the links to the written accounts of my personal experience. The notation added by the mod: [Self-promotion edited out of post.]
By choosing those words, he cast the impression that my introduction to the community came in a form of advertising, that I had arrived with the intent to promote and sell a product.
The actual links I posted were to written accounts of my personal experience:
- http://thefifthbody.homestead.com/index.html
- http://community.mentalhelp.net/showthread.php?t=4937&page=5
The next link that was edited by the moderator was in regard to that other member of the community, noting that they'd come off their meds four days before. That link was removed with the added notation: [edited out instructions on how to come off of medication]
A second moderator came along at that point to note: I would like to see a reasonable amount of peer reviewed research supporting the success of these other therapies. Aside from CBT and DBT, I'm not aware or treatment programs without minimal or no meds that work for severe mental illnesses.
Now, she and I both know that the links to the studies I posted were removed by her and she had a copy in her mailbox but she didn't say that. Instead she said she wanted me to provide them, thereby implying that I hadn't made any effort to do so. When I later ask her to share them, another member attacks me for not posting them myself. He seems to have missed that I did, and they were removed.
She ended her post with this comment: If you want to generalize or claim that various programs cure or substantially help serious mental illnesses, post credible support from science or medical journals supporting your opinion, please. She's emphasizing the point because she wants the readers to gather a very distinct impression. [For the record, the list of studies I shared with her were largely drawn from this source: Finding Out More About the Open Dialogue Approach.]
At this point, the moderators have done their job of setting up the community to respond to me as an enemy in their midst, by carefully presenting me as:
- someone who arrived looking to sell a product
- someone who has encouraged others to go off their meds
- someone who has not presented any scientific evidence regarding the treatment they promote
Then, they let the rabble knock me around a bit...
- Fuck you, guy.
- No really. No one is buying your shit.
- What you're suggesting will fucking hurt people.
- THAT'S HILARIOUS.
The mods return to add more fuel...
- Your thread is up for review because of its content.
- We don't generally let users promote products and services via the website.
- The model of our community is not generally compatible with anti-med, anti-pharma, anti-psychiatry agendas.
- You have been PMed by multiple staff members explaining why your posts have been edited or made temporarily invisible while they are under review.
(It's true that I was PM'd by dianthus and Stacia but not until after those posts were removed. dianthus pm'd me to say he'd removed the links to my personal experience for violating "advertising and spam" guidelines. Stacia PM'd me to ask me to provide links on studies -- that's how she ended up with the copies in her mailbox. There was no mention of any "temporary removal". The posts were simply gone and the attacks came flying after that.)
dianthus stands back so the rabble can have another round...
- We think you're a self-important ass-wagon.
- The idea that you have a child who has to submit to your idea of treatment terrifies me.
- it's been made abundantly clear that no one wants you here...
- You asked for what you're getting.
- You came to a pro-medication, pro-treatment website and advised strongly that people should halt their medications.
- Again, fuck you, guy. No one is buying what you're selling.
- I shit on you
dianthus returns ...
- Your thread with all the posts about the treatment you're talking about was reviewed and is on the boards for open discussion, and has been for hours. I have absolutely no idea why you're saying we stifled it.
In other words, why are you making such a fuss when we have played so nicely?
I arrived there with the desire only to share some information about some of my favorite treatment programs -- all three developed by professionals, all three making use of at least some degree of medication, and all three producing recovery rates in the range of 85%.
I guess that it has to be 100% medication and no recovery or else it's anti-psychiatry, anti-medication, and anti-pharma
Sometimes it's who you know. Sometimes it's what socially acceptable medications you make use of.
1 comment:
I've just discovered your interesting blog. I was diagnosed with schizophrenia back in the 60s/70s, a diagnosis I dispute. I've been fine since 1974 when I got myself off the debilitating medication and left the psychiatric system. I know that many people with a schizophrenia diagnosis are not so fortunate. But, for me, and I'm sure many others, it was the diagnosis and treatment by the mental health service, not an illness, that almost destroyed me. I will be returning to read more of your blog. Good wishes.
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