Psychiatrists will often refuse to cooperate in people’s plans to come off psych drugs….

designThis post is a bit of a hodge-podge and it’s long. It begins with a quote of a status update from the Beyond Med Facebook page. It was very popular and got lots of comments.  I cut and paste some of the the resulting comment thread from Facebook.

The post ends with a second cut and paste of an old post on this subject matter and then a list of links with further information.

Psychiatrists will often refuse to cooperate in people’s plans to come off psych drugs….

When psychiatrists refuse to prescribe appropriately so that folks can taper safely off psych drugs they are acting criminally.

…most of the people on internet psych drug withdrawal boards are in this position. We only have each other for support and direction.

The comments include those of a self-identified mental health professional who has a hard time understanding our perspective. Sadly people who are subject to the services he provides are subject to such attitudes far too frequently throughout all of the mental illness system. Please keep in mind that such mental health professionals are afraid and they are not trained to know what else to do. It’s easier to find compassion for that sort of reaction if we can recognize the fear and ignorance that motivates it. We can apply the same compassion to ourselves when we are overly reactive.

Still when we are subjected to such ignorance in our most vulnerable moments we can also be gravely harmed. This is why I’m sharing it below. Being aware of such attitudes is important in order that we might remain safe.

What no one mentioned to this man in the below thread about his concern is that people come off drugs precipitously for a reason. That reason is the drugs feel really really bad and no one listens to their very valid concerns about them. No one helps them in their most vulnerable moments to find another way. And so they do things desperately and unsafely, not knowing what else to do. This must change. No one should feel that cut off from understanding.

There are now some new comments now on Facebook, but I cut and pasted this prior to getting all of them. Go there to read the rest.

I’ve removed people’s names so that only initials remain so that google might not index them. That said, Beyond Meds facebook page is a public page and so it is indexed somewhere in any case.

  • KL I attempted to discontinue my psych drugs in March 2012. My psychiatrist was ok with me doing this, but had zero understanding of the appropriate way for me to do this. I tried to withdraw from 5 medications, some that I had been taking for almost 15 years. I can’t even describe the horror of this ordeal. I was hospitalized and now have Fibromyalgia from the intensity of the withdrawal. I was unaware of the dangers of this at the time. The lack of knowledge of the prescribing doctor almost killed me.
    • Beyond Meds chronic pain that is often diagnosed fibromyalgia is common after psych drug withdrawal…it does clear up in a lot of cases…I’m so sorry you’re being impacted…I’ve learned to largely mitigate the pain and slowly I do continue to minimize it…I hope you are able to find ways to heal it too.
    • SB That’s why I can’t stand a question like:”Is your doctor approving your withdrawal?”
    • Beyond Meds right…there are few who know what is up…it’s really totally nuts.
    • Beyond Meds
  • KB As a person with a MH Diagnosis AND as a clinician on an emergency psych team, I can tell you MOST of the emergency calls are a direct result of people stopping meds without consulting a doctor for help. Or the person has judged themself “well enough” to be off meds – which isn’t usually the case.
    • JS Hmm, the point you seem to have missed is that the doctors, even when consulted, do not know how to safely withdraw people. Sorry you are blaming the victim. What bad patients! How can they know whether they are “well” enough. Many times it is the drugs themselves that are making people sick.
    • KB The point that you seem to have missed is the fact that MOST people who take a psychiatric medication for an illness like bipolar disorder or schizophrenia are on these meds for a damn good reason. They stop on their own; the taxpayers foot the bill until the person has been re-stablized. Please understand that WANTING to be off meds is NOT the same as NOT NEEDING meds
    • Beyond Meds I used to work in the system KB I can assure you I interpreted what was going on very differently than you do…when people are given options and supported in them they will do the right thing for themselves…that does not happen in the mental health system mostly. It’s coercive from the get go and given there is no infrastructure of care to support alternative choices it will remain that way. That doesn’t make it right though and it doesn’t change the fact that a lot of us are gravely harmed in it as it’s functioning right now.
    • Beyond Meds So the fact that there are options needs to be recognized and supported hence the work of people like me and The National Empowerment Center and Mind Freedom and Will Hall and the Freedom Center…etc etc…all populated with people who have come off drugs and were also diagnosed bipolar and schizophrenic
    • JK Kevin I think you’re right that when people cold turkey off psych drugs there is often serious problems. Monica would be the first to promote slow tapering. Her whole point is that doctors either won’t do that, or are not educated to the need for a slow taper. Saying someone NEEDS meds is simply false. Some may choose to take them. But many many can do quite well….much better…without them. Instead of a continuing escalation to greater polypharmacy cocktails, we need a conversation about lowering and tapering down off these extremely potent chemicals that have a huge side effect profile and long term health ramifications.
    • KH I think there’s a huge difference between coming off meds quickly and unsupported vs slowly and supported, which is why a lot of people end up in ED, perpetuating the myth that people are on meds for a reason and they need them. My husband was diagnosed with chronic treatment-resistant paranoid schizophrenia and after years on just about every ‘anti-psychotic’ at the highest doses, including combinations, and various other meds that weren’t working, we slowly tapered off (also took a few years) and simultaneously addressed his underlying and previously unheard childhood experiences of abuse and trauma. He’s been med-free for over two years and has never looked back, has reclaimed his life and status as a father, husband and is slowly reclaiming his physical health. He rocks! I think assumptions that people are on meds for a reason preclude us from developing the supports we need to prevent these ED tragedies from occurring.
    • KB There is indeed a HUGE difference between working with a professional to discontinue meds slowly and just deciding to stop the medication on your own. The National Empowerment Center, NAMI, and other organizations are great. But,they foster an attitude of helplessness rather than self-responsibility. If we don’t like the psychatric treatment we are receiving, look for a different provider. AFter all, a patient employs his/her doctor; not the other way around.
    • Beyond Meds there are often no providers available that understand withdrawal…this is simply reality…I work with thousands of folks coming off drugs who have been unable to find professional help…that’s the fact on the ground.and The National Empowerment Center is nothing like NAMI…

    • KB Anyone with half a brain – professional or not – should know to “go slow” and stop stopping if problems arise. And, of course, there is always the FDA-approved literature on a medication – available online or in any pharmacy – that provides instructions on stopping a medication.
    • KB That’s the last of my commentary. This group is NOT what I thought it was when I “Liked” the page. I’ve un-“Liked” it and hope I never have the misfortune of hearing from all of you “victims of medication” again.
    • Beyond Meds —  KB I encourage you to visit some withdrawal boards online if you are having trouble believing what I’m telling you…until you’ve seen the grave harm and neglect dished upon so many hundreds of people…coming together from all over the country and the world with similar stories it’s hard to understand when one is in a world that systematically denies the stories from the other side.
    • AB Bye Kevin Burke…
  • CA Came of psych drugs in the last 9mnths after being on for 15 years. Holy shit…the mind is some thing else, i released hell in my own subconscious amongst other things. Didnt realize you could go to hell while alive. I guess the change in chemistry in my mind now means no turning back. Kind of got let out the hell fire but not quite at the gates of heaven..still, feeling better, like another lady has commented..iv not died, think i will pull through this and the worst horror is over.
    • Beyond Meds yes, the damage the drugs cause can feel like hell, absolutely…people do get to the other side….many folks speak of things being better than ever. Certainly I have a clarity unlike anything I ever had in my life…it’s a dark night of the soul that really wakes us up. Take care.
    • Beyond Meds
  • NP ive weaned myself off a few. doctors said no, so i did it anyway slowly and logically. i then told them and they said, ‘oh – you seem better without it, ok.’
  • MC Doctors Nurses Psychiatrist Psychotherapist want to try there drugs for themselves because in my case I am fully aware of the damage of what they even suggest, Because it is not only criminal to refuse to co-operate with patients or clients trying to come off such medication, but to try and force them on people as well through there legal ignorance is a absolute disgrace on there part, I am appauled at the ignorance that I have had to see by ignorant medical so-called professionals and had no qualms in telling them. infact I do believe that medical ignorance is contributing to the lives and health of patients sufferings, and I am not tarring everyone with the same brush but after my study,s, I find it a absolute Disgrace on there part, Half of them need to go back to medical school or study something else.

Read more comments from facebook here, or leave your own.

So you see, this resonates with people. I am surrounded on social media with folks like us who have very similar experiences of being disrespected and harmed by the system. These are not isolated incidences. They happen everywhere daily and there are many thousands of folks who I have personally interacted with now via withdrawal boards and the blog and facebook and twitter.

People who wish to come off psych drugs far too often simply don’t have any competent help. This should not be happening. When we come to realize the drugs are making us sick and then our so-called care providers refuse to help us free our selves it comes as a massive betrayal. As I’ve said many times, I wish I didn’t know what I know quite often. It’s not a fun thing to have to bring up again and again, but given I know it and I continue to see grave and reckless harm done to vulnerable people by doctors they have been taught to trust, I must speak up. I am not alone in this. With the work of hundreds of people like me and The National Empowerment Center and Mind Freedom and the Freedom Center and the Icarus Project and the International Society for Ethical Psychology and Mad in America and many other people and organizations who understand how such a large number of folks are being negatively impacted by psychiatric treatment we will make changes. Change is happening. Let’s make it happen faster that the harm might stop.

When people know they are being harmed by the drugs they need to be given safe, competent help to get off of them. No one should be effectively enslaved by incompetent doctors who don’t know the true nature of the drugs they prescribe.  And that is what happens far too often. No one should involuntarily be dependent on their psych drug dealer. When a doctor doesn’t know how to safely help people off the drugs when they want to come off, they are enslaving that person to a life of dependency on drugs and to the people who prescribe them.

Below I’m reposting an article about how hard it is for folks to find help when they choose to come off psych drugs. It was first posted about a year ago here.

The truth is often ugly… (what people are up against when they choose to free themselves from psych meds)

How to find?
How to find?

I always find it sadly and tragically amusing when critics of psychiatry (generally professionals who are trying to cover their asses I guess) slam the psychiatric system and then tell people to be sure that they have a doctor to help them withdraw from drugs…as if these doctors are readily available. The thing is these people making this recommendation KNOW that they are not readily available and so they participate in the chaos by creating and perpetrating yet another double bind for those who’ve been subjected to and often already harmed by psychiatric treatment. We have it hard enough without these folks, too, pretending it’s better than it is.

The truth is ugly in this instance. The truth is that when people tell their MDs they want to come off meds some MDs will discharge these patients without support. Other MDs will commit and force drug these patients. The truth is it is often dangerous to tell your doctor the truth. This is a tragedy that needs to end. People should be able to get support from a medical professional. I understand the wish that it were something that might be the case, but it’s simply very often not on offer. So slamming psychiatry and then telling people in the same breath to get medical care to disentangle themselves from psychiatric drugs is, well, kind of delusional.

I think a lot of people really don’t want to believe this is what it’s like. But when that denial is foisted upon those who are subject to this reality it compounds the harm that has already been done. These are human rights issues. We have a right to not be on neurotoxic drugs and we have a right to find a safe way to get off. We need to know that it’s often not safe to approach our doctors. It’s really very simple. Tell the truth.

We can, once we know the truth, get on the phone and interview potential new doctors if we have the luxury of choice. Not everyone has that luxury so in those situations people are forced to continue seeing a prescriber without necessarily telling the prescriber that they are withdrawing from the drugs. Again, this is not something I recommend because, frankly it sucks. It sucks really badly and it can also be dangerous. But again, this is reality and people have to do this with some frequency. Please, if you’re in a position to consult folks in such a painful, lonely and scary position, do them a favor and be honest with them. Thousands of us have freed ourselves from drugs now without any meaningful medical support because we had no choice but to do it that way. We  chose our health and wellbeing over finding a non-existant doctor.

I generally tell people that often the best one can do is find an MD who will cooperate with your plans to come off medications. To find an MD who will listen to the very real and scary issues that might come up during the withdrawal process and to learn together about how to come off the drugs. I only found someone to cooperate with me…he really didn’t care much about what my experience was and I had to do all the research and footwork to figure out how to manage my taper. I was grateful I had a cooperating prescriber though because I needed prescriptions in ever changing doses and many people are not so lucky to get an MD to even cooperate with the initial plan.

I’ve now worked with thousands of folks coming off medications via this blog and via all the withdrawal boards I’ve participated on. I often wish I didn’t know what I know, but I do and so I speak up because there are far too many people out there who deny what is happening to so many thousands of people.  I want the harm to end. Help us end the harm.

I’ve written about finding an MD: Medical compliance? Adherence? No. My MDs are my PARTNERS

For general information on withdrawing from psychiatric drugs see here: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

 For additional information on psychiatric drug withdrawal support and withdrawal boards see here: Support in withdrawal

And for professionals: A plea to prescribing physicians and psychiatrists: please help us heal –please share with all the MDs you know.

For a list of withdrawal friendly doctors see here:  Recommended doctors, therapists, or clinics  – Please add to it as well if you know of others. Right now it’s like finding a needle in a haystack for most people. Let’s work to change that!!

See also: Peer support? This is the real thing. Free of institutionalization. (psych drug withdrawal)

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters