The below piece was written by Steven Morgan in an email exchange that took place on one of my email lists. I thought it was a beautiful well thought out email and asked Steven if I could publish it here. It is slightly edited to allow for it to make sense in this context, links have been added and names removed to respect privacy. I did the editing. Steven’s website on recovery is here. Thank you Steven!
This is the edited email:
I am glad to see the back and forth statements of belief concerning the medication issues and the chemical imbalance issue. I do, however, think that we must be willing to step into new territory with our discourse and not just resort to “You believe what you want” and “I’ll believe what I want”. I think it is necessary for us to be informed in these matters because:
1. Many of us work with others to whom we relay our conclusions, which can obviously impact their recovery.
2. Many of us do a pretty good job of self-stigmatizing ourselves because of the medical messages we have received.
First, I would like to address a comment that one of our members made: “Hate to say it, but I think a lot of the people who have that successfulschizophrenia, never had schizophrenia at all.”
I feel that this is a very stigmatizing and dangerous line of thinking. It goes: “Well, schizophrenia is a lifelong chronic illness, so if you get through it COMPLETELY, then you must have never had it.” Pat Deegan referred to this stigma in her own life…that doctors tell her that she must have been misdiagnosed, that surely someone with schizophrenia couldn’t have a PhD and go through periods of time without meds. Well, she was hospitalized 9 times in her life, and her story quite accurately portrays that she exhibited the lump of behaviors deemed “schizophrenia”. Mary Ellen Copeland does not take medications…are we going to say that she must not have been manic-depressive? How about Dan Fisher with the National Empowerment Center who was hospitalized for 6 months for a diagnosis of schizophrenia? He doesn’t take meds either and says he is fully recovered. Dan has written something about this topic. I think it’s worth reading. Here’s the link.
Second, every bit of research ever shows that there is a substantial portion of people – sometimes 40% – who do not benefit from medications. Yet at mental health agencies EVERYONE is on meds. This doesn’t fit the research. There are many people out there who are suffering because of the sedative, metabolic, and “personal stigma” side effects of medications, when research shows that they would be better off without medications. Certainly some people experience enormous benefits from medications, but many others don’t, and we have to start thinking outside the box if we truly want to partner with them in healing.
Third, many research studies show that people DO recover entirely from things like schizophrenia, and some without meds at all. Go here to read a quick summary of some of these studies.
Fourth, we as people with psychiatric diagnoses have to really come to terms with this medication issue. The fact is, some of us don’t take meds and we are okay without them. We have found other tools that have worked for us just as well or better, and we utilize those tools. Many of us would also say that we have experienced profounds shifts in consciousness as a result of our psychiatric experiences, but that those shifts provide us with a new way of existing in the world.
Fifth, there is a horrible stigma out there towards people who choose to go off of meds. For one, we usually can’t find any doctor to actually help us, so we have to go other sources (which may actually be a plus). We are told that our chemical imbalances will come back, that if we feel better then it’s just because we are entering “mania” or “psychosis” again, etc. We are frowned upon by others working in the mental health world, by doctors, by advertisements, and most painfully, by peers. We don’t get insurance coverage for alternatives that may actually help us and we are virtually isolated from mental health services that see our decisions as ill-informed.
Finally, we live with the very real fear that we may not make it, not a fear just from our past experience, but mainly from all of the misinformation deeply rooted into ourselves that we are in fact ill and always will be. Coming off of meds is not just a medical decision; it’s a decision to see yourself in a different light. And that might be the hardest part of all, to actually realize that maybe you’re not as sick as you were led to believe…
There are peers who have great passion for the work that they do. But I have concerns about some of the things some of those people say. For instance, someone said that they were sharing information with peers with whom they work from the bipolarcentral.com site that was posted earlier. That information is flawed and definitely biased. It essentially gives every reason why people should keep taking their medications, and much of the info is wrong. So, my concern is that it is biased. Are you also telling peers that there are people who do recover without medications, and that there are people who use meds for awhile but then stop when they don’t feel they need them anymore? Are you telling peers that you will help them access the same level of information if they choose to come off of their meds?
My original challenge is simple: find one scientific journal article ever that actually proves that a chemical imbalance has been found. You won’t find it because it doesn’t exist.
THERE IS NO WAY TO MEASURE NEUROTRANSMITTERS IN A PERSON’S BRAIN. Therefore, there is no way to actually measure an “imbalance.”
I love your work Gianna. I really do not have anything to add. I just wanted to say how strong and accurate this post is. I wish all bipolars would take up the gauntlet of asking pointed questions from their mental health care givers and flush these truths out for themselves. This post should be on the desk of the APA. You write so articulately and powerfully on this subject.
I personally do not care for the “leave me to my pet beliefs on chemical imbalances and I’ll leave you to yours.” It is a cop out. This is not religion we are talking about. It is biochemistry. We look to medical science and the proof. Right now there isn’t any anywhere to be found. Nevertheless, Big Pharma leaped onto this theory and turned it into a marketing ploy and look where we are now. You have to ask, show me the proof. Then ask again and again until you get it.
There are two strings of words those with Phd’s never want to say. Those sentences are:
I(we) don’t know.
I(we) am wrong.
Keep asking them pointed questions until you get that answer. Then move onto to real healing elsewhere.
Polly,
I think that making the effort is useful – even for the things we do that don’t quite work out the way we expected….
The effort itself is useful – the effort itself has worth
Hope you never lose the effort – the effort to recover
– and the belief that you can recover
Duane
Thank you. This is exactly what I needed to read right now. I just posted something about how much it bothers me that the only reason I am well right now is because of medication, but this gives me hope that I might not need it someday. And even if I always do, I guess it doesn’t mean that all my own efforts toward recovery are completely useless.
After reading this post I am amazed that more options aren’t given to consumers in the mental health system. That makes 6 leaders in the c/s/x movement that use healthy alternatives (maybe more): Mary Ellen Copeland, Pat Deegan, Dan Fisher, David Oaks, Dan Stradford, Will Hall and I suspect Shery Mead.
Why aren’t choices more of an option in the mi system? This should be common knowledge.
Markps2,
Well said – agree with you on everything – ‘ditto’ with ‘bipolar’ (from someone who knows where you are coming from)…..
Pharm is a scam.
Duane
Just like to say also mental illness/schizophrenia is not a life long illness, unless you and the people around you choose to make it that way. This is 99.99 percent of the people.
Mental illness may be real in the physical sense as in real reasons for mania/psychosis. No sleep, food allergies , the bodies hormone/thyriod chemicals out of balance.
Any of the physical problem I just mentioned are next to never looked for, and usually are temporary. Stigma and the faith in pharma meds to-be-stable is perminant.
For myself sleep heals me, anything that could alleviate stress/worry enough to allow me to sleep well is what would lead to mental recovery. It is sleep that healed me, not the drugs that allowed me to sleep.
I avoid whole wheat products, and they stick this protein in most everything. Doritos to soup.
You have to be physically healthy to be mentally healthy (in general). I loath the term “mental health” as your mind can not be diseased.
If what you are eating is wrong (movie-Supersize Me), if your digestion is bad (constipation alternating with diarea), if you are not sleeping (due to bad food and no exercise), if you are not exercising-getting fresh outside air. You will likely FEEL BAD, feeling bad leads to poor “mental health”. No pharma pill can make you eat healthy, exercise, and reap the benifits from the consequences.
That being said, once a person is labeled with serious mental illness , they have limited choice, options and freewill.
Sara,
Thanks for understanding – I think outloud sometimes – when I talk with my wife, I use terms like this –
I don’t know all the answers – YES, it is incredibly complex – I think this is probably the single largest factor in the conventional model that makes it so useless – the ‘simplicity’ of a ‘chemical imbalance’ – with a one-size-fits-all mentality.
I really don’t like the term ‘bipolar’ – ‘manic-depressive’ is a bit more accurate, I suppose, but conjures up images of Jeckel and Hyde, etc –
I think that some people (such as myself, with this ‘bipolar’ thing – whatever it is) are a bit more senstitive to the world around them – and this creates challenges – this senstivity is alive and well in the physical sphere as well – with environmental allergies, food sensitivities, and/or other health-related issues.
Ironically, the conventional model teaches to ‘ignore’ the body – take the meds, and don’t complain about the side-effects.
I think success comes in the opposite direction – meditation, and listening to the body – understanding our own sensitivity, and learning to work with it successfuly – rather than dulling it/numbing it, etc.
Call me ‘crazy’ (been called worse), but I cannot get beyond our fingertips – no two alike – not even with identical twins – amazing stuff – take a look at your own fingerprints – never been any like them, never will be again?
What does this have to do with ‘mental health’ – in my mind, everything – if our own fingerprints are uniques, then imagine our brains – with their structure, design, and complexity.
One size will never fit all – we see this with the natural approach as well – one person does great on a certain amino acid, herb, supplement, etc – the next person is affected negatively by this same thing.
I think we have to come to a place where we encourage each person to find what works for them – and encourage each other – cheer each other on with the discovery and the challenge that it involves.
That’s what I think.
You are an interesting person – enjoy your insights.
Duane
thank you for this. This is excellent! For info on alternatives to meds, see Dr. Andrew Saul’s article,
Mental Health Treatment that Works
http://www.orthomolecular.org/resources/omns/v01n11.shtml
No offense taken by me anyway. I know we are on the “same side” here. I appreciate your comments and we all are just thinking out loud and hoping we don’t oversimplify — it’s all so complex — but yes, I do think the label of schizophrenia is terribly destructive and just about groan every time I hear someone called that as I do with “bipolar” and even “clinically depressed” frankly. Do you know that even Kay Redfield Jamison (who I consider a nemesis of sorts) didn’t like the term “bipolar” when it first came into fashion? She preferred “manic depression”. Not that I like either one of them that much but I’m with her on the one I prefer.
Sara/Gianna,
When I used the term ‘you’, I did not mean to imply – IN ANY WAY that either of you were making these assumptions – I was speaking of our culture – certainly not about either of you.
I enjoy the dialogue – my passion toward the labeling is directed toward the conventional model – obviously a model that both of you see as broken – I was trying to add to the discussion – I agree with your views on it – wanted to add my two thoughts – just ‘thinking outloud’ – with more questions than answers – but, with a strong passion about the worth of each person – each soul.
Duane
Sara/Gianna,
I think to label someone ‘schizophrenic’ is to de-humanize them.
I don’t meant to be so passionate about this, but it is how I feel.
How do you give someone this label, and then expect them to heal/to recover?
You tell someone that they have a lifelong disability, that needs lifelong medication and therapy, and then wonder why they don’t act ‘normal’ and function in life.
I have to come back to a very passionate belief – we are all as unique as our fingerprints – no two brains are alike – no two people are alike – “Unique’ is the only label a person needs – it is not greater nor less than anyone else – it creates an environment where each person begins to feel as an equal – this is the only ‘reality’ that makes sense to me.
This talk about ‘coping mechanisms’ is a little discomforting to me – it reduces the life experience (at least in my mind) to coping with this and coping with that…..as if some people learn to cope ‘better’ than others.
I think this ‘schizophrenia’ is nothing more (and nothing less) than a combination of factors – poor metabolism, food allergies, chemical senstitivities, environmental factors, and a list of other possibilities…..
I don’t know everything – never claimed to, but I have come to believe that one person’s ‘schizophrenia’ is unique – not to be compared to another’s – the life experience of struggling is a combination of getting the body strong (where the brain resides), and going through a ‘spiritual’ experience.
I believe that until we come to terms with our own journey, and begin to appreciate the journey of those around us – only then will we begin to appreciate the accompanying strength that comes with weaknesss. This (in my mind) is spiritual law….
“Poor coping skills” reduces the discussion to less than a spirtual experience – a personal journey, and moves it into a scientific study – a clinical area – where there is little hope.
When we view these phenomenon as spiritual mysteries – all things are possible for those involved. There is always hope.
Duane
This is really a great piece (as so many of your posts are, Gianna, whether you write then or someone else!). For some time I have wrestled with the concept of schizophrenia as a diagnosis, ever since I heard Mary Boyle speak. She is author of a very scholarly book called Schizophrenia: A Scientific Delusion? I think, if I have it right, she argues that schizophrenia isn’t really a disease but a broad spectrum of groups of symptoms that are triggered by life experiences (and probably some genetic predisposition). In my own writing and conversation I much prefer to refer to psychosis rather than schizophrenia because psychosis is much more likely to be viewed as a transient event, a response to crisis, than some permanent disability the way schizophrenia is. You can have a psychotic episode and not be necessarily stigmatized for life whereas if you’re labeled schizophrenic that stays with you. More importantly it’s easier to get your head around the idea that you can recover from psychosis, while recovering from schizophrenia has so much baggage associated with it that people don’t think it’s possible. I think we need to stop medicalizing psychosis to the extent we do. Maybe psychosis isn’t so terribly “abnormal” in a lot of contexts and if we can just understand the story behind someone’s “resorting” to this coping mechanism we might go a lot further to helping that person than giving them pills that sedate and blunt them to such an extent that the psychosis subsides for artificial reasons. It doesn’t mean they were never psychotic if they recover from the behavior but it does mean they are not permanently disabled. Anyway just rambling here — just trying to provoke thought — not intensely wedded to this. I’m sure it’s very complex but it’s wonderful to hear recovery and empowerment stories. So much of mental health today is all about the opposite of that.