One of the sites I’m fond of is Hopeworks Community. A number of things can appeal to me about a site. Some are heartfelt. Some are lyrical. Some provide pragmatic advice. Some take political stances. In fact, most do all these things. Hopeworks provides reasoned analysis of issues relevant to people affected by mental illness (but see Hopeworks and what I write below for some discussion of the ‘illness’ concept). Any time I get engaged in a topic, my fingers go nuts and before long my text has morphed from an intended sentence or two into a mini-essay. That happened yesterday on Hopeworks, when I wrote a comment discussing two posts: ‘What diagnosis depends on‘, and ‘On the words we use‘. The subjects were diagnosis and semantics in mental illness. Important subjects. Since I was happy with my little response, and since I won’t have much time to write today, I am posting my discussion below.
I promised to write about the relationship between ‘who we are’ and ‘what goes on in our brain’. That topic is so vast that covering it in a blog post is presumptuous to the point of grandiosity. But I do have some ideas that can be squeezed into one of my longish essays. The interrelationship between mind and body (especially, of course, brain) fascinates me, as it has philosophers for ages. I want to do it justice. I have touched on it before, and no doubt I will come back to the subject over and over until the day I die (hopefully a long time from now, for those who monitor me for suicide risk). So the much-anticipated essay will be produced soon. But not today.
Instead, here is my 2¢ about diagnostics and the labels that result.
[Comment to Hopeworks with regard to psychiatric diagnosis:] Having had medical training, and even one-time aspirations to become a psychiatrist, I started out with faith in the DSM. The more time I spend as a patient, and reading blogs, and thinking about how I’m going to get to a better place, I see the fallacy in labeling people as mentally ill. My latest thinking is that our brains are as different as our mugs. Maybe I even brought this up on your blog before. You can categorize faces: male, female, European, African, Asian, old, young, attractive, ugly. And you can separate facial expressions: happy, sad, angry, etc. But just saying someone (like me) is a male, of European descent, middle-aged and with a look of concentration at this moment does not mean that is all I am or will ever be. It is not enough information for you to recognize me on the street, or to know what would work to make me more comfortable with being alive.
Psychiatric diagnoses have that level of precision. Some people have fluctuating moods. Some are chronically sad. Some worry all the time about everything. Some hear voices and have ‘odd’ ideas. Each of these persons can be diagnosed with a DSM label, and so by that definition they are mentally ill.
It’s a bit like saying only a particular race or gender is capable of running things. Only a certain emotional make-up is healthy; deviate far from that norm and you have a disease. Maybe you should be locked up and sterilized. You certainly can’t be in a position of leadership or responsibility (is anyone else old enough to remember Thomas Eagleton?).
Like you say, what matters is what works. And what works is what makes life a more satisfying experience. Dulling emotional responses, or squelching internal voices may help accomplish that for some people. But not for all. Some would be happier to be left with their minds in their native condition. Some can get a lot more happiness out of life by accepting their quirky brains than they ever can by acquiescing to long-term psychiatric drugs.
As someone who once bought the mental disease model intellectually and emotionally, I am astounded to find myself about to write that I am not sure that mental illness is a valid construct. I took all my meds diligently for years (I was a very ‘compliant’ patient). But I still felt rotten. Now I feel better even though I am on a milder chemical cocktail (hopefully soon to be none at all). So was I really sick? Or just confused?
I spend time on the local psychiatric unit, counseling patients about their legal rights when they face involuntary confinement. Some of these people are quite out-of-control, and would have trouble being safe on the streets. I can’t say what the answer is in those cases. Maybe when things go that far there really is a sickness going on. But that does not mean that the person has a mind that can never be trusted again. That they now should carry a lifetime diagnosis of, say, bipolar I. That they will require drugs forever, and can never learn to live safely and well without medication. Maybe it is the all-too-frequent permanence of mental illness diagnoses that is their biggest problem.
We are all different. ‘Some of us are more different than others.’ The problem with the ‘illness’ label, is that it automatically means there is something defective. Maybe all that is wrong is that our eyes are open. That we see and feel more pain, or are more in touch with imaginative influences in our minds. Or we are more conscientious and want everything to be just right. Or impulsive. Or scared. These are not illnesses, they are responses to life. Maybe they are exaggerated and do not serve us well. Maybe medications can help us live fuller lives. But I object to being told my brain is abnormal, and that the person who never soars into ecstasy or crashes into sadness is healthier and (by implication) better.
It cannot be overstated: what matters is what works. If having a diagnosis in hand makes one feel vindicated, so now they can show people they aren’t just lazy or selfishly pessimistic, then it is a good thing. If it helps select a medication to get someone balanced enough that they can go home and work on better solutions, then maybe a diagnosis is useful. The same if being given a name of their ‘lllness’ leads a person to the most helpful shelf in the bookstore. But if it means I can never get long-term care insurance (I can’t), or be trusted to practice medicine (a psychiatry program I applied to reported me to the medical board), or that I will always need to take medications that wreck my body and undermine my self-image, then they are most definitely not OK.That kind of thing happens so often, that it is easy to understand why people with mental/ emotional/ behavioral/ brain/ psychiatric – illnesses/ conditions/ disorders/ diseases/ abnormalities/ challenges/ dysfunction/ gifts object to the psychiatric model. When diagnostics work they help a little. But when they are overused, misinterpreted, or otherwise go awry, they do an incredible amount of harm.
(I slightly modified this post on 2009 August 17, c. 08:30 PDT.)
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1
Milo at http://likopoliom.blogspot.com
Will, i couldn’t even get a job at the supermarket’s check out (I had to disclose my diagnosis because i was asked to). I think it is the most unfair situation. I so want to enjoy life like anybody else and like other young people of the same age go to concerts and all… but what is the point if i don’t get a chance to have a job to afford all this. I don’t want to be a burden to my family so i always keep my mouth shut. but this kind of living hardly ever does anything for one’s self confidence. as if you are stuck in a hole and the entire planet wants you to stay there coz you are different and have a label stuck on top of your head. it really sucks! and sad too.
Posted at August 17, 2009 on 7:11am.
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Will at http://willspirit.com
Learning how you and many others have been harmed has opened my eyes. The discrimination I’ve experienced has hurt me, but because of my long history before being labelled as having a ‘major mental illness’, my life is comfortable in most material aspects. If I had been faced with the obstacles I now contend with when younger and less established, I can see that there would have been many restrictions on my ability to live freely, earn a living, and make my own choices. To know that, and then to meet you and hear how you have been held back by stigma and discrimination, both saddens me and motivates me to do what little I can to change this injustice. As always, I am really glad to know you.
Posted at August 17, 2009 on 11:13am.
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lostinamaze at http://inamaze.wordpress.com
I agree with what you have written. As a whole have human beings ever excepted anything different? My illness (panic disorder/agoraphobia) has gotten in the way of my life, hence the label. It was out of control so therefore I would definitely say that I had an illness. The label has helped me to understand myself. I didn’t have a clue to what was going on before. I believe it is a response to life and I also believe that it could be partly genetic in my case. Or maybe a learned response from being around people with anxiety problems when I was a kid?
As I am learning to cope with it and accept my “quirky” brain, is it still a mental illness? Even though this is part of me it is not all of me. I believe everyone’s normal is different and that’s how we should be considered in the psychiatric world. Besides who decided what “normal” was anyway?
Except for my doctors I have told only two people about it. There is too much stigma attached to this kind of stuff. Having a diagnosis puts me in the “different” category.
I hope this makes sense.
Posted at August 17, 2009 on 11:57pm.
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Milo at http://likopoliom.blogspot.com
Oh my God Will, are you holding your little dogie in your profile photo? he is soooo cute! and thank you for your kind response… it is so very much appreciated and really heart warming.
Milo
Posted at August 18, 2009 on 3:27am.
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Milo at http://likopoliom.blogspot.com
also Will, on a much happier note, my life has taught me so much about being content. even sometimes with practically nothing. i am not worried about other people giving me a chance. i work hard. I go to school and I have earned my marks. it is going to be my graduation ceremony in a couple of month and it is the most amazing feeling that i earned every single bit of it in the toughest conditions that not many of my classmates would even dream of going through.
God bless and wishing you all the best,
Milo
Posted at August 18, 2009 on 3:35am.
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freda at http://YourWebsite
congratulations Milo and well done Will – you have both got wonderful talents.
Posted at August 18, 2009 on 6:49am.
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Will at http://willspirit.com
I’m very glad to hear of your success, Milo. You are an inspiration for me. I am suffering a low morning right now, and I have been feeling pretty sorry for myself. Reading your contentment, your perseverance, your courage, and your strength remind me that I can do better.
Posted at August 18, 2009 on 7:44am.
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Will at http://willspirit.com
lostinamaze:
Yes. I do understand. Thank you.
Posted at August 18, 2009 on 7:46am.
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Will at http://willspirit.com
Milo:
You can see another picture of Ralphy in the footer to the website. Emily, our other dog, also gets a little display there. My dogs bring a smile to my face every time I see them or play with them, no matter how low my spirits. It would be hard to get by without them.
Posted at August 18, 2009 on 2:28pm.
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Marian at http://diffthoughts.blogspot.com
Just coming by to say hi and thanks for your comment at my blog! I’m reading here, I see the change, I’d have a lot to say, but have been absorbed in some less nice discussions lately… Somehow tough to hear someone tell you, they’d locked you up and thrown away the key, if you’d asked them for help… For your own good. Geez, and here I am. No one locked me up and threw away the key, thank God! Still, these bloody do-gooders simply can’t see… Exhausting…
Well, for now just a thought or two about lostinamaze’s comment above: It was the same for me when I got the label (inofficially, thank God for that too!). I thought: ‘Ah, now I understand!’ The relief, or whatever to call it, lasted for no more than a few days maybe. Then the word started to sound somewhat hollow, and it became more and more clear, that it didn’t really explain anything. On the contrary, it explained away. Bottom line: it didn’t do anything to help me understand myself. It actually stood in the way. Like a solid brick wall. It isn’t only not all of me, it simply is not me. Not the tiniest bit. So, down with that brick wall. Freedom, true freedom, is no labels at all…
(Sorry if I’m rambling here. Just tired.)
Posted at August 18, 2009 on 4:40pm.
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Will at http://willspirit.com
Welcome back, Marian. It’s always nice to hear your thoughts.
When you describe your experience with labels, and how they don’t help you, it makes perfect sense to me. On the other hand, the way knowing specific diagnoses helps lostinamaze also comes across as very sensible. What doesn’t compute with me is my impression that you are saying that because labels are not good for you, they are not good for anyone.
In my first read of your comment, I wrote a pretty long response that came from my objection to generalizing one’s personal experience onto the situations of others.
I’ve decided to make that essay my next blog post. But I did want to leave a note here to the effect that it sounds like having a label helped lostinamaze quite a bit, which kind of makes the point that what doesn’t work for one person, may very well work quite effectively for another.
Posted at August 18, 2009 on 7:05pm.
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Marian at http://diffthoughts.blogspot.com
Will: Yes, I do generalize. And I want these labels to go.
There’s no doubt, that change depends on coming to terms with what is, and accepting it. No one can let go of something, they don’t know what it is. The question is, whether it really is coming to terms with what is when you replace the personal account of your thoughts and emotions (“I’m scared”) with someone else’s perception of your account (“panic disorder”).
At first glance it may look like an opportunity to see yourself in the mirror of awareness-raising communication. Unfortunately receiving a label is an act of one-way communication. One-way communication isn’t awareness-raising. It is awareness-suppressing.
Experience shows, that people, who don’t move beyond these labels, don’t move beyond what the labels tell them they are. Especially if the label seemingly is a scientifically proven one. The label becomes a self-fulfilling prophecy, the labelled “chronically ill”.
No one moves on, who constantly is told who or what they are, and who identify with what they’re told. What makes people move on is asking them, who or what they are.
“But I have panic disorder (or whatever else from the DSM) and I moved on!!” Yeah. There are shades of grey, here like in every aspect of life. Nevertheless, moving on never happens other than in proportion to the degree of identification with the label (cf. “Even though this is part of me it is not all of me.”). The label limits. Eventually, all labels do. Without labels, you can go wherever and how far you want. There are no limits. Spiritually, that is.
Given this unlimited spiritual potential we all have, it is sad to see people limit both themselves and others.
Posted at August 19, 2009 on 2:32am.
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Will at http://willspirit.com
Yes, it is sad to watch other people make their own choices when we think we know what they should do. But no matter how well thought-out your solution or philosophy, it is still yours. It does not apply to everyone.
By your reasoning, any person who accepts a label such as PTSD will be denied enlightenment. They will be locked in limits forever. Do you really have the audacity to say such a thing to the hundreds of thousands of people who read self-help books to deal with their history of severe child abuse and its lingering effects? Do you truly believe they are all less spiritually evolved than you just because they find having a diagnosis helpful and you don’t?
I agree that forcing labels on people is wrong. But if a person chooses to use the label to help improve their lives, then I trust they know what they are doing. If you insult people’s intelligence and autonomy by telling them you know what’s best for them, then it should be no surprise that you get some hostile responses. You also will make little progress toward improving the system you so passionately dislike. Eliminating all of diagnostics and psychiatry from consideration may make it easy to define one’s position, but it is not realistic, compassionate, or wise. You may think they are all deluded, but I’ve met many people who feel that their psychiatrist gave them a new lease on life. Frankly, that has not been my experience. But I think it would be a mistake to throw out their testimony just because it does not match mine.
I am sorry to come down so hard on you about this, but if you don’t respect others enough to believe they know what’s best for themselves, then you are no different from the psychiatrist who thinks everyone who hears voices must take medication. You will object to that analogy, of course, and I imagine its been put in front of you before. But before you shatter the mirror I’m holding up, think of what it feels like when other people tell you they know what you need.
A person who says he knows better than you, is more educated than you, and understands the brain better than you is a psychiatrist. Someone who says she is more spiritually evolved than you, knows the mind better than you, and that you will understand some day when you get close to God is an evangelical.
How much difference is there?
Posted at August 19, 2009 on 3:32am.
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Marian at http://diffthoughts.blogspot.com
Will: I didn’t say, I wanted to take the label from anyone. Of course, it’s their choice if they want it or not. But well, if it’s their choice, then it also should be everyone else’s, no? So, no official labelling, thanks! Especially since psych-labels have the unpleasant characteristic to stick.
Another aspect is that I find it rather rude and illegitimate to provide actually quite discriminating labels, if people want them or not, that have no science behind them to prove them indisputably correct, like, let’s say, “I have blue eyes”.
Posted at August 19, 2009 on 8:23am.
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Marian at http://diffthoughts.blogspot.com
Forgot: Unlike you, I don’t see any true acknowledgement of a person’s existential suffering in a psych-label. And, frankly, I don’t know why anyone would need to have a (pseudo-)scientific term thrown at them, that labels them defective, “disordered”, and thus less worthy as human beings than those not labelled, before they would be able to start and work things out.
Posted at August 19, 2009 on 8:42am.
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Will at http://willspirit.com
(this comment has been expanded from a prior version)
Marian-
First, I apologize for the tone of my last response. I wrote it at 3 am or so, and it has been several nights since I got more than three hours of sleep, so my nerves are getting kind of raw. I try to avoid rancor, because it does not help advance any cause, but only hardens people into their positions. So I should not have been so harsh. I would not blame you if you quit coming around, but I hope you don’t.
I appreciate and agree with what you said in this most recent comment. Yes, labels in psychiatry are all-too-often pejorative and permanent. They generally lack scientific validity, at least as regards etiology or whether an emotional, behavioral, or cognitive pattern is pathological (rather than just differing from the mean). Diagnoses can be fairly reliable as descriptors, if they are applied intelligently, but mental health clinicians often take them to be the same as medical diagnoses, which they are not.
However, my point is not really about whether labels, or medications, or any other treatment approaches are good or bad. Even if something harms 90% of the people who use it, there will always be some who find it beneficial. It’s a bit like substance abuse. Alcohol, tobacco, and street drugs, used to excess, can cause awful problems for one’s health and social function. Yet there are many who use marijuana (for instance) in moderation, and never have difficulty. I believe people should make their own choices as to whether or not to indulge. Prohibition, or campaigns saying that drugs are evil, have little effect on how much harm individuals and society suffer. The answer is education. Then people can make their own choices about whether to take the risks or not. If they choose to drink, and later get into trouble, then resources should be available to help.
Psychiatric diagnoses and medications can help some people. Knowing how many clients find satisfying and enriching lives under that model is difficult, as is finding out how many suffer serious harm. I believe more independent (i.e., not drug company sponsored) research is needed to pin down the effectiveness of the medical paradigm applied to mental illness. More education of drug side effects and drug alternatives are needed. Cognitive, meditative, behavioral, and spiritual approaches need to receive the same amount of promotion as psychiatric drugs. And so on.
But declaring the entire psychiatric approach worthless only alienates those who believe in it. Far better to gently educate people about the facts, and let them decide for themselves. Then the (possibly small population of) ‘clients’ that truly benefit will feel validated and respected. At the same time, the seeds will be planted for them to later make changes in their strategy if they find that drugs and so on are not helping (or are causing harm).
For the most part, I agree with your assessments of the psychiatric model. Nevertheless, I do see people who truly seem to benefit. Maybe it is all placebo response. That is something that research can pin down. Maybe the effects are temporary. In that case, I want to disseminate the information necessary to help people leave the psychiatric paradigm and find approaches that work when the drugs quit helping. And all along the way, I vigorously oppose forced medication, other involuntary therapies, or institutional ‘commitment’ (I am on the fence about short-term confinement when there is demonstrable and significant danger to self or others that has a reasonable chance of being temporary).
Above all, I value respect. I don’t think psychiatrists (or even all drug company executives, though it’s hard to be sure about them) are evil. They believe in what they are doing, and blind themselves to the harm they cause. I respect their opinion, and their freedom to practice their trade, provided the population really understands what psychiatry can and cannot offer, and what damages might result. A cursory list of all known side effects at the end of a TV ad is not enough, of course.
You write with elegance and have a gift for analysis. I think you are performing a vital service by announcing the defects in psychiatry. But in my opinion it is best to save the criticism for the ones who uncritically promote the psychiatric paradigm. Those who choose to use it, flawed as it is, deserve respect, validation, and the presumption that they are smart enough to figure out if it is helping or not.
Addendum–I think if you look at self-help books covering any ‘diagnosis’ in mental health, you will find a great deal of compassion and acknowledgement of existential suffering. Especially if the book is written (as most are) by someone who has the ‘condition’ they write about.
Posted at August 19, 2009 on 9:15am.
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Marian at http://diffthoughts.blogspot.com
Will: I’m certainly not innocent myself. I can come off as rather categorical.
I agree that labels can be helpful when you’re looking for information about your experiences, other people who’ve had similar experiences, etc. If it hadn’t been for the label, I’d probably had a hard time finding all the information on the net, that I found, and connecting with others.
But while I think it’s all right to name extreme experiences so as to be able to find information on them (and, in fact, terms like “kundalini awakening” and the like are also labels), I don’t think it’s all right to label the people who have these experiences medically as “disordered”. Even if they, due to the experiences, actually are “out of order”, not functioning, for some time. I don’t think it’s all right that these experiences are written down in anyone’s medical records.
BTW: What I meant when I wrote about the limiting potential of labels is that limiting one thing from the other is the meaning with labels, for better or for worse. There’s no doubt that we need labels to communicate. But labels also imply the danger of becoming a tool to control us, instead of being a tool we control. Medical labels for extreme experiences were created by people who wanted a tool to limit themselves from the people who have the experiences. Not by the latter to limit their experience from other experiences. A crucial difference.
The people who created the labels, tend to force their labels on us. Control. Not by us over ourselves, but by others over us. And this kind of control implies an imminent danger of becoming very limiting. If I choose a label for myself, I can also always choose to let go of it again. If someone else chooses a label for me, I have no control over that label. Cf. this vid on “personality disorders”, some of the most discriminating labels from the DSM. Just try and taste how that sounds: personality disorder. It renders the phrase “You are not your diagnosis” definitely a joke. Because your personality is exactly who you are, not spiritually, but in the eyes of the world.
Posted at August 19, 2009 on 4:50pm.
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Will at http://willspirit.com
The people ‘who created the labels’ are not always the same ones who force them upon us, but they do set the tone for how the labels get applied, and what conclusions people draw about our worthiness as humans. I know exactly how the label ‘personality disorder’ feels. I’ve had it applied to me by two separate psychiatrists and one therapist. On the other hand, my most recent psychiatrist and therapist, in very frank and detailed discussion, convinced me that those diagnoses were in error. Both of the docs who thus labelled me were upset with my progress, and concluded that since their treatment was not having the effect they expected it must be because I have a defective personality. My sister also carries a PD label, and the psychologist who first applied it was very clear about how that meant she was permanently damaged and I should more or less give up on her. As someone who has worked behind the scenes with psychiatrists, especially back in the 80′s when clinicians were less circumspect about criticizing their clients, I saw very clearly how pejoratively the Borderline PD is interpreted. I’ve heard audiences of psychiatrists break out in laughter when a speaker says that BPD patients are ‘difficult’. So when I read my PD diagnosis after discharge from a hospital where a psychiatrist and I were in open disagreement, or when my more recent psychiatrist told my wife that I was still depressed because I have a PD, you can imagine how angry and humiliated I felt.
Also, just to be clear about how I feel and how closely we agree, here is a quote from the post above this comment string:
Posted at August 19, 2009 on 8:22pm.