Hi again Twilah 🙂 — Thank you for your gracious clarification. I had a feeling it was just a matter of semantics… I think you, me and Nomadic are pretty much all of the same mind, but that perhaps we just express things differently. I do think it’s particularly valuable to prove points by showing the disparate ways mental versus physical disorders are treated and named. I guess language in general just causes problems! (For a good novel on the subject, read “A New York Trilogy” by P. Auster. That’s the former lit major in me speaking, I apologize…!). I have a feeling if you and I met in person we’d be kindred spirits. Your writing style speaks to me and you’re clearly a formidable philosopher. I tried to visit your blog but the URL appears to not be working. I literally just got out of the hospital today following the last round of surgery from my own suicide attempt in the fall; which is the only reason I allowed myself the “luxury” of reading and responding to MIA today. I’m really grateful to have read your work and hope I can find time to read more soon. Thanks again.
I think what “Nomadic” is saying is he doesn’t like using the word “disorder” in any context; he recognizes the legitimacy of any personal struggle, even if he chooses not to name things a certain way. I feel as though you are diminishing people who struggle with purely things of the mind, as I do. My struggle is anything but “clear cut” and not remotely physical. Some would dispute it. And I don’t agree with the labels which are used to classify me. But nonetheless my struggle is severe and I can’t survive in this world without help – and when it comes to the ADA, I don’t get the kind of help you do precisely because of the stigma surrounding “mental disorders.” My struggle is just as real as yours. But you seem to only view clear cut, physical limitations as worthy of ADA help. That’s what bothered me about your comment, even though I agreed with almost everything else you said. I hope you understand what I’m trying to say – because I understand what you’re critiquing and agree with you. I’m not trying to attack you, I’m just trying to make a point about the ADA, and point out that perhaps you have a bias yourself in regards to who is entitled to accommodations, however unintentional….
Twilah – I thought your article was excellent. I really really did – and you’re a great writer, on top of a great thinker. But – I just want to make sure of one thing – I hope you’re not saying you don’t think I – a person who has been diagnosed with an eating disorder, as well as obsessive compulsive disorder – who struggles with aspects of both but who is firmly anti-psychiatry, anti-labeling etc. – am not just as deserving of ADA accommodations? Are only people with true PHYSICAL limitations deserving of it? I’m hoping you do know the ADA covers mental disorders as well? Now, I actually detest the term “mental disorder” – nonetheless, I don’t have a mind that fits in well with standard work weeks and standard work environments, so if “mental disorder” diagnosis is what I need in this stupid world to get certain benefits and accommodations (even though employers are rarely held accountable to upholding accommodations for mental disorders, and I know the literal federal court appellate numbers, because I’m contributing a chapter to a university textbook about issues related to this) – then I believe I am just as entitled to help – I sincerely hope you think so too. Because otherwise I wouldn’t have the money to buy the food I can even get myself to eat.
Boans – I’m really gratified you finally gave yourself, publicly, credit, for saving a child’s life — you deserve that, and deserve to feel proud of that – it’s so huge! I am glad that that first point of Hecht’s resonates with you. I also understand what you’re saying about the second argument, which I tried to address to some degree in a reply to one of Sera’s comments.
Thanks for all of your comments, too — I was sorry to read last night of your plight since the truck incident. I will try to look up the thread where you wrote about it, when I have more energy; I’m a little overwhelmed with just living right now… I hope that whatever the outcome of the systemic injustice you experienced, you can find things to live for and fight for. You clearly have much to offer.
Sera – yes, I think you hit the nail on the head. In truth I was so exhausted last night that I did not read your article as closely as I should have, and honed in on those two questions you offered. I agree we shouldn’t walk away to go march the streets when someone close is suicidal! :-). I was just thinking that, for me, the questions you offered probably wouldn’t have helped me(no offense to you — they are still much better questions or statements than most people say to someone who calls in suicidal distress). I DO think those questions could definitely help some; just not me. I guess I need to think more about what, in the aftermath of the past few months, I think could have helped. I did try calling two people when I was on the roof – neither answered… I’m not sure what would have happened if they did…. Anyways thanks again, and I will re-read your piece. You are doing great work here on Mad in America and helping all of us. Your insights are unique and profound.
I definitely agree with your response – the “suicide is selfish” argument is something which has always infuriated me, and which I have strongly disagreed with – I think I probably am not doing a good job at adequately conveying Hecht’s book (and keep in mind, I haven’t gotten through a lot of it yet). When she talks about the contagion etcetera effect – I don’t think she is placing blame on those who do attempt or succeed at taking their lives – or, at least she’s trying not to place blame. I don’t think she realizes that she unintentionally may cause people like me to feel guilt from this argument, which guilt increases shame/self-loathing, which ironically increases the suicidal urge – because it seems clear to me she does not have the type of temperament/mind which experiences the intensity of feelings, and types of thoughts, which make individuals SERIOUSLY consider or attempt suicide, rather than just have ideation (which I don’t diminish, but there is a difference) or struggle with life’s difficulties. For me, it was the community effect that got to me — somehow the way she introduced that element in the introductory chapter, didn’t make me feel guilty. First, I didn’t know about it before my October attempt, so I have no reason to feel guilt about a possible effect on others I was unaware of and had never considered. I don’t know – I am not saying I entirely agree with her, at least not yet – but that it could be a helpful line of thought to consider. I had only thought of the “suicide is selfish” argument in terms of my family, and have always found it ridiculous. Since I am single and have no children – I am only a burden to my family. My parents still, at my age, are forced to help me far more – in a multitude of ways – than any parent at theirs and my age should have to. My pain also causes them, and my sisters, pain. As well as my acting out – and the harsh words I can say to people when I am in a bad place. So I have always believed that while I know my family may experience grief and pain initially, if I succeeded in ending my life – that in the long run it would be far far better for their lives, both emotionally and financially. And that belief is yet another primary force which plays into my thoughts when I am seriously considering suicide. So I never advocate anybody use the “suicide is selfish” argument in this way — but broaching the community effect – in a NON-BLAMING way – perhaps could help some. I know when Robin Williams died, it affected me and brought me closer to the brink of suicide — for complicated reasons (I wrote a piece about it for the San Francisco Bay Guardian, so I won’t go into those reasons here). So I do think there is a “contagion” effect to some degree. The author herself has had two friends (successful poets) take their lives – and one was apparently pushed closer to it after the first poet ended her life.
On another note, I think something which needs more attention – and if I had the energy right now, I’d write a piece about it myself — hopefully I will be able to write such an article in the near future – is the fact that there are virtually no support groups for survivors of violent suicide. Again, I don’t mean to diminish ANYBODY’s attempt – but I’ve tried to kill myself via prescription drug overdose several times over the past four years; and the aftermath of an episode like that is entirely different from what I’ve had to go through the past three months. A month or so after I jumped off my apartment roof, I tried searching for support groups for survivors of all forms of suicide attempts – there are none in my area; there are none hardly anywhere (the closest I found was in Southern California). There are PLENTY, tons really, of support groups for FAMILY MEMBERS of suicide victims – but none for people like me — because we are the bad people, right, we are the evil, selfish ones who caused our families pain – plus we’re “crazy” so society is glad to be rid of us anyways (hopefully everyone gets my sarcasm)… Anyways I touched on this briefly in my December piece too, and it is paramount that the lack of such support groups be rectified…
I wanted to qualify my first comment, which I wrote in a bit of a rush. I was just introduced to a writer wh0 – so far; I just started the book – seems to provide the first compelling “words” for reconsidering suicidal impulses, and how right that action seems in my/our darkest moments. I hope I’m able to put these words to use, when I reach another, inevitable suicidal phase (fortunately, I am not suicidal currently). The author is Jennifer Michael Hecht, a philosopher/historian/poet whose books include “Stay: A History of Suicide and the Philosophies Against It.” Among other things, she makes two central arguments which bear consideration – 1) That suicide “unfairly preempts your future self” — that perhaps you owe yourself the chance to live to see a day when you might feel better, and do things with your life you never imagined; you owe yourself at least the chance to reach your potential, and 2) We also need to consider suicide’s effect on humanity before taking our life – apparently (I am learning) sociologists and epidemiologists have found that suicide causes more suicide – they have actually tracked suicide “clusters,” a “contagion” effect, etcetera. Hecht writes, “suicidal influence is strong enough that a suicide might also be considered a homicide… [if this is so] then staying alive has the opposite influence: it helps keep people alive. By staying alive, we are contributing something to the world.”
Hecht also talks about each individual’s value to the community – people need people… But the second argument stated above, in particular, appeals to me. I would never, ever want to play any remote role in increasing the risk another might have in taking their life because they were exposed to knowledge – whether personal or distant – of my suicide. Hecht says by simply staying alive we serve a purpose – and the conviction and despair that my life lacks purpose has always played a strong role in my suicidal urges, when I have them.
I’m grateful I discovered Hecht’s book. I’m exploring a variety of readings/research on suicide and learning much from both my experience, and the many fields which study suicide that I was unaware of (there’s even a discipline of “suicidology”!). So far Hecht provides the most convincing secular arguments I’ve ever heard to reconsider that I’m benefitting my family and society by relieving them of my burden (which I always believe, when I have the desire to take my life). Her book might provide some help in trying to know what to say – words that might actually work – to the seriously suicidal individual.
Thank you very much for reading about my experience, saying it matters, and thank you equally for your insight about Joiner’s research, Boans. I’m so glad you were able to extricate yourself from The System – even though cost was very unjust. I hope you are in good health now.
I threw myself off my roof top three months ago, and am still undergoing rehabilitation. I broke almost every bone in my body and am “lucky” (depends on the day) to be alive. I wrote an article about my attempt, suicide myths and research in December on my Web site, “A Disordered World” – please read it – as it addresses similar issues you raise there – including the failure to address suicide as a primarily a socio-cultural and political, rather than “mental illness” problem.
Here is the link to my article, “No room in the inn: Suicide survivors’ social, and emotional, wasteland”: http://adisorderedworld.com/?p=1355.
I also intend to pursue a more ambitious writing project on suicide, as my physical rehabilitation improves…
As a survivor of violent suicide, I don’t entirely agree with some of the discussion points you raise here – although you get a lot right. I do however take issue with the two questions you think can help people contemplating suicide. Read about the work of Dr. Thomas Joiner, which I summarize in my article. Despite being a psychiatrist – after years of research, he has boiled high suicide risk down to three primary risk factors, none of which have to do with a diagnosis of mental illness. (His father also died by suicide)> His findings resonate with my experience. I really don’t believe any words can help a truly suicidal individual – I think only remedy of social injustice, and action, can. I am told I am a brilliant writer, for example, by hundreds of people – yet no one will hire me due to my “coming out” as someone “mentally ill.” I live in poverty. I am 41, single, and will always be alone and never have children. The prejudice I experience as a result of being branded “mentally ill” and wrongly forced into the system – when 12 years ago I was a successful, high-functioning journalist – is what led me to suicide. No matter how hard I work, I cannot seem to gain a foothold in this world and make a sustainable living. My lack of agency in this world, my complete powerlessness, is what led me to do something I never thought I’d do. It wasn’t my “depression,” my “eating disorder,” or various, subjective and pointless diagnoses. You definitely bring up important and valid points — but I just want to emphasize I don’t believe there will ever be a “solution,” helpful words, or true solace for suicidal people until the prejudice and oppression we and other minorities/disadvantaged people experience ends. It continually infuriates that the “mentally ill”‘ are denied even the opportunity to be recognized as fighting to launch a legitimate civil rights movement. We absolutely need to find some way to come together – there are too many factions, among those of us who think in alternative ways about the psychiatric establishment – and launch a bonafide civil rights movement the likes of which have been seen with other minority groups.
Thanks for this story! – it is a very important issue to investigate. I myself almost started the DBS procedure a year ago, out of a desperate hope to alleviate worsening, co-morbid OCD and anorexia. However as a freelance and former newspaper journalist I must comment on the significant need for editing in this story — I found it very hard to wade through and could only skim parts of it due to its poor flow, grammatical errors & run-on sentences, poor organization, and excessive length. I think the author is a great writer and reporter — but even the best writers need editors. I know I sure do. I only point this out because the writing problems may prevent this story from garnering a more mainstream audience – and I think that should be an aim of Mad in America. If the issues raised here only circulate among those of us who share the same views toward the incredibly flawed treatment and perception of “mental illness” which reigns in the U.S. today – then the writing here will never really help spur change. And isn’t that a primary goal of the Mad in America community? That aside — thank you nonetheless for all your thorough research and for bringing out into the open the problems with DBS treatment – problems I had not been informed of when I was considering the procedure a year ago. I also want to agree with a previous commenter’s post about the need for greater attention being paid to psilocybin research — I too agree this holds a lot of hope. I actually had a psychiatrist indirectly recommend (since he couldn’t say it outright) I try magic mushrooms myself; there are psychiatrists who are trying to legitimize/legalize the use of things like psilocybin, MDMA, etcetera in academic settings. There is also the Santa Cruz research center (I think it’s MAPS?) doing FDA approved studies. It would be great if we could help advocate that more funding go toward those studies. I understand the existential/ego separation effects of drugs like these play a big role in helping alleviate our “problems in living.” If I had the means to try something like psilocybin, I would do it in a New York minute…..
I forgot that I wanted to add — much credit should go to “personal stories” editor Emmeline Mead, who was instrumental in helping turn the first draft of my submission into the shorter, better-flowing article which resulted above. She is very good at what she does!
Thank you, Alex! So much of what you say resonates with me right now, as I try to work through an anger that has been consuming me for too long, and toward inner peace – accepting that some peoples’ views or prejudices will never change, some of my personal circumstances won’t change, no matter what I write, how hard I work, what degree of health I achieve, etcetera. Your point about trying to find peace within and extend kindness outward is a particular focus of mine now. Because for a long time I have, honestly, not been doing that. I’ve expressed my anger in ways which are hurtful to not only myself but others. And I feel very bad (and ashamed) when I act out in such ways. We have enough bad on this earth and it is so wasteful to add any more to it. And it always feels better to do good anyways, of course (it’s another form of empowerment, I think)… I think the self-compassion piece is also important and key to enabling loving kindness toward others and the world at large — it is hard for me to extend compassion to myself, since I am prone to deeming myself a failure at life; prone to self-hate on a variety of levels… Another issue I struggle with are “OCD”-ish behaviors which can take up many hours. And so I often feel I am wasting what valued time on earth I have; and wasting space when I could be helping others, or writing… But I digress. I just wanted to thank you as well for yet another thoughtful comment, am SO glad you could relate to it, and thank you for the kind words about my writing. (“Beautiful” as applied to anything I write is a precious word for me). The validation of both my experience and my writing helps immensely.
I thank both madmom and Alex for your comments – you are right that we have a common denominator — and in that commonality we have power – by coming together to speak out about such injustices. That’s why, as I’ve said in another comment, I’m so grateful for Mad in America. Thank you also, madmom, for your kind words about my story – again, I am extremely humbled if it encourages anyone to also speak of their own experience. I did just try to read your first comment – but was only able to get part-way through it – your daughter (and family’s) story. I just want to say you have an incredible, incredible voice and are so very eloquent yourself! I am completely blown away at how you are able to view your daughter in a way opposite of the majority of mental health professionals – how you can see through their labels to the profoundly unique, gifted individual she is. You should definitely write more and get your story out! I am also wondering if you’ve read Ethan Watters’ “Crazy Like Us” – he looks at how “mental illness” is viewed in other cultures. I found the chapter on schizophrenia particularly helpful – in that in places like Zanzibar they don’t see that “illness” as we do in the Western world. At any rate I will try to finish reading your comments when I get a chance.
Please don’t apologize! I am SO happy if my story helped enable you to voice your own story! I think the “personal stories,” section editor might be interested in a submission from you. I am interested myself in your experience, I just haven’t had the time to fully review all of yours & others’, subsequent comments, due to their length and me having other things to attend to as well, the past couple days. I really feel for you, and admire your courage in trying to help your daughter, and fight for better alternatives, as well as immensely respect your understanding of her experience. That is not always the case with parents. I am lucky in that my parents have come to be as supportive and understanding as you. Your daughter is lucky to have you on her side. I encourage you to submit your own “personal story” article as I think it could help you and your daughter a lot. And, it’s always (as I write in my article), empowering to write about one’s experience.
Dr. Hoffman – thank you so much for your thoughtful comments and your understanding of some o the the forces really behind “mental illness.” Your patients are lucky to have someone like you to help them. I of course agree with what you said. I had another quote in the original draft of this article which had to be cut. It was from J. Barchillon in the preface to “Madness and Civilization”: “The roots and symptoms of folly are being looked for today in psychology, medicine, and sociology, but they were still and are as present and important in art, religion, ethics, and epistemology. Madness is really a manifestation of the ‘soul.'” I think that quote gets at similar points you made. The quote from your patients is also really powerful (and, in a way, beautiful). Thank you again.
I think it is great you all have a space to talk in, but perhaps it might be more productive to continue this conversation in an MIA forum? Keeping comments on an individual article on-topic helps better-foster discussion of that article’s themes. I think madmom and other people who’ve commented on her situation are discussing very important things, but it’s also hindering further discussion of some to the topics I was trying to raise. Thanks 🙂
Julie – I’ve received only welcome arms and positive comments on MIA, and from their staff as well. MIA has been the most wonderful refuge for me, as compared to the writing I’ve tried to spread to ED folks…. On that note I am largely in agreement with you as far as the ED world goes. Again, it is amazing to me that consumer/survivor groups and movements are nary to be found in ED-land. And yes it’s not like advocates or professionals are bad or doing things purposely hurtful – they are just used to dismissing us as “mentally ill” individuals with malnourished, broken brains, people who obviously shouldn’t be taken seriously. I think its perhaps the combination of “mental illness” with “malnourished brains” which makes it particularly difficult to spread viewpoints like ours in the eating disorder community. (We do need to connect more to help make that happen. I’m just always so overwhelmed 🙂 and behind on things… !)
Hi “bpdtransformation” – Thank you; your comments are very on-target. To answer one of your questions – yes, atrocious things are occurring (imho) in the ED Tx world. For-profit, residential treatment centers are presented as first-line treatment to vulnerable women and families who don’t know to dig deeper or ask questions. They claim to use “evidence based treatments” but don’t, and none of them track outcomes to demonstrate whether their treatments actually work. The centers can perhaps help some women with less complex “eating disorders” (a label I don’t subscribe to), or women who have struggled for very short amounts of time. But I know many more women who get sucked into the revolving door. It is amazing to me that a completely unregulated, private industry is touted as a science-based, guaranteed path to health. And things are poised to get worse as a pending federal bill would mandate coverage of private, for-profit residential treatment in all states. While parity can be a good thing – that’s not necessarily so when it’s mandating coverage of an unproven treatment – and even worse, a treatment which often does more harm than good…. Anyways, I could go on at length about the subject, but you can see my stories on the industry here: http://adisorderedworld.com (that’s my site). I applaud you for speaking out and being a “whistle blower” as well! It is SO hard. Hardly anybody in the insular ED world gives my points any credence – even though I am always careful to back claims and stories with an abundance of research and voices from academia and the like (while they are not necessarily the true “experts” – I do this in my attempts to be taken seriously. But alas it still doesn’t work). The brain-based model predominating, is a huge problem in the ED field right now, too — almost all the funding goes to gene studies, etc. It drives me crazy… As far as the Black Lives Matter movement goes – I’m not informed enough on some of the extremists’ tactics to comment. I am hoping the people you speak of are the exception rather than the norm. Most of the coverage I’ve viewed are citizens participating in peaceful, nonviolent civil protest which does not use such slanderous language. I wouldn’t condone anything else. Thanks for reading the article and your comments!
Julie – I always value your comments. You have such wisdom to share – and with such eloquence. Thanks, too, for reading my writing. I know you can relate to it on a special level. It’s always helpful to me to know you’re out there, writing on similar themes. I think the self- harm issue is very interesting – its origins are different for everyone. I certainly never expected myself to engage in such a thing. And it has served a very different function for me than for most people I was in ED treatment with…. It’s unfortunate that so many mental health professionals don’t understand the subtle forces behind such acts, and how different it is for everyone. I’m really glad you found writing, too, and continue to be impressed by your blog, your books – and your MFA (something I always wished I could have obtained, but have never had the means or ability to do). Thanks again!
Thank you for your words, B. I think that anger is a starting point to breaking free of false messages we are indoctrinated with – but I also see how I have allowed anger to sometimes consume me in unhealthy ways. So I am trying, currently, to work through that anger — work to change what I can, and accept that certain things can’t be changed – or at least not in my lifetime. That’s not to say I think any of us should passively stand by – but that I have to find ways to fuel my anger in different ways, and find acceptance – when things I write aren’t heard or acknowledged, when change doesn’t come, etc. — to realize that systemic change takes decades if not centuries. That is hard thing for me to accept, since I often feel so powerless. But if I can learn to be ok with the fact that my speaking out may only have a small impact in a small sector of society – but that that’s at least something, that at least I tried – it will help me lead a more peaceful life. I don’t know if that makes sense. I’m admittedly a little sleep-deprived today so I apologize if I’m not replying coherently 🙂
Hi Steve – thank you for your thoughtful and validating response, as well say our kind words. It also makes me very glad that this article resonated with you, and “inspired” you :-).
I don’t know that I can touch on all the interesting points you raise – but in regards to your comment about whether the referred-to “normal” people are really “normal” (a term I have problems with anyways) — No, I agree with what you’re inclined to think as well. One of the few outside-the-box psychiatrists I was priviliged to once see, read me a quote by Aldous Huxley, who put it like this:
“The real hopeless victims of mental illness are to be found among those who appear to be most normal. Many of them are normal because they are so well adjusted to our mode of existence, because their human voice has been silenced so early in their lives, that they do not even struggle or suffer or develop symptoms as the neurotic does. They are normal not in what may be called the absolute sense of the word; they are normal only in relation to a profoundly abnormal society. Their perfect adjustment to that abnormal society is a measure of their mental sickness. These millions of abnormally normal people, living without fuss in a society to which, if they were fully human beings, they ought not to be adjusted.”
I think that is right-on, don’t you?
I think you make several important points about children – and that the way they are treated then can unfortunately lead to unfortunate consequences as they come into adulthood – for example, them too also falling victim to being branded with various DSM labels, forced into treatment etcetera. But I would need to give that subject more thought to reply to it effectively right now.
Thanks again for reading the article, and contributing to what I think is a critical discussion! Your enthusiastic words have inspired me as well.
Sera – my site is http://adisorderedworld.com – I would welcome your feedback. What is mind-boggling to me is that consumer/survivor/peer-support etc groups & movements are totally absent in the ED world. EXCEPT there is one fantastic research-psychiatrist in Australia, Stephen Touyz (who I’ve written about), who is trying to bring recovery-oriented models of care to the ED Tx field… Have you heard of people like Patrick Corrigan, labeling theorist researchers etc (they are cited in the article I posted this weekend on m site). You don ‘t have to only refer to personal/anecdotal examples as evidence of the rampant discrimination/prejudice which exists. There is quite a lot of good research into this… I just find it more useful in countering establishment thinking when I can cite that type of stuff. I have gotten a prominent outlet interested in some of the issues I’ve investigated, largely because (being a former newspaper reporter myself) I write the way they write – but about anti-establishment ideas. I don’t see much change occurring legislatively – but if we can get issues into mainstream media I think there is a greater chance of swaying at least some minds.
Sera – I was delighted to read your article; it is so timely as I am currently writing about many similar things myself. I have a upcoming post here on Mad in America that touches peripherally on some of your themes, but I write more about them on my own Web site. I just posted a column actually which cites some of the very real empirical evidence – conducted by university-based, social psychologists – about the discrimination those labelled “mentally ill” experience. When you compare how our rights are not given the same credence as the physically disabled, under the ADA, things become even more telling. My recent column stemmed from Alison Parker’s derisive use of the word “crazy,” and his (and others’) constant conflation of violence with mental illness. Your frustration with advocacy organizations is something I very much share, in particular as it relate to one of the disorders I’ve been branded with, an “eating disorder.” Orgs like NEDA etcetera are ostensibly supposed to be working for the benefit of us – but in reality they are funded by the for-profit treatment center and give us no voice whatsoever. I have tried tirelessly to be heard by then and parent organizations (who are particularly narrow-minded in their views, and constantly emphasize the “brain disease” model of mental illness, because they are so terrified of being blamed for their children’s “disorder” – when obviously emphasizing environment does not necessarily implicate parents). I would love to connect with you more; you might be interested in reading some of my writing on my site and my forthcoming post for MIA (which hopefully will go up today). At any rate, thank you again; your post was very insightful, well-put, informative, and ends with a similar call-to-arms that I conclude my latest blog post with. I look forward to reading more of your work.
Julie — We seem to be of similar minds. I think discussion of a different – and certainly more compassionate/empathic – approach to treating eating disorders is much-needed and rarely discussed – or realized – in nearly all sectors of mental health practice/research/writing. I recently started writing a series of investigative stories about the eating disorders “residential treatment industrial complex” that was linked to in the “Around the Web” section here; among other things, the first article in the series mentions how some alternative treatment approaches being used in places like Australia are proving far more effective for individuals battling long-term eating disorders, and in particular anorexia (I’ll be discussing those alternative approaches at more length later in the series). I would love to connect with you…. I will visit your Web site too. I’ve looked at a couple of your articles on Mad in America today, and your experience and viewpoints very much resonate with me. In addition to joining Mad in America as a semi-regular blogger, I have recently been trying to think of ways to help bring about concrete change in the largely-abusive forms of treatment almost uniformly administered to individuals branded with an “eating disorder” diagnosis, so am looking for like-minded people to team up with.
It is so amazing to see a major news outlet cover this! Thank you for posting. My former graduate MSW advisor, at San Francisco State University, created a program – called the “Student Success Program” – to provide wrap-around and preventive services to students, and to promote an inclusive, safe, validating environment (among other things). It is completely Recovery Model-oriented. I was lucky enough to help give input into some of the program design. Here is the link to anyone interested: http://studentsuccess.sfsu.edu. SFSU
This problem goes beyond the RCTs that are being conducted. A far larger problem, from my experience, is the dearth of RCTs which should be occurring on programs our health care dollars are paying for — i.e. failure to track outcomes on for-profit, mental health treatment programs – i.e. residential eating disorder centers, substance abuse centers, etcetera. It’s one of the biggest flaws about the fact that the U.S. is the only industrialized country which lacks socialized health care. Go to Canada – it’s illegal for anyone to just open up a private mental health facility there and claim expertise they may not have. There is far greater accountability and oversight, and most programs must report outcome data, because they are funded by the government. There are drawbacks to socialized health care, yes (waiting lists, etc.) – but at least you know you’re getting evidence-based treatment in Canada. You’re, for the most part not, if you are receiving treatment from a private mental health care provider in the U.S.
“Passive-aggressive” is someone who doesn’t have the guts to put his real name on his MIA registration, “oldhead.”
I stated my point respectively, unlike you. If I have to read multiple, run-on sentences many times over, to make any sense of an article – then very important ideas like the above are never going to see the light of day. If it didn’t take hours to decipher the article I would have shared it via social media with my network of friends and colleagues – who include prominent journalists.
If you don’t know what the “consumer movement,” “self help movement,” “ex-patients'” movement etc are — then it seems you are just spouting opinions rather than doing the research necessary to inform the wider public – in a way that will make people actually listen – on what is so screwed up about how we treat, view and “diagnose” the “mentally ill” today.
It seems like you have very important facts and arguments to present here; however I could not get to the end of the story due to the quality of writing. I don’t mean that as a criticism. I am passionate about these issues too, but as both a journalist and a mental health consumer, I know how important it is to write such pieces succinctly and cogently – in order to gain a wider audience. I highly encourage you to seek an editor in the future.
I need to read this study but as someone who has struggled with chronic, severe anorexia for more than 20 years, I want to hesitate people to not jump to conclusions. It appears this study does not look at Abilify, and that the mean age is fairly young. I am 38 and recently found help from a combination of Abilify and Zoloft. I go back & forth on the merits of psychotropics – I both fear them and put hope in them. I still have yet to decide where I stand. While people in the recovery movement are quick to jump on the anti-medication wagon – and for good reason – I just would like to ask that we approach this subject with balance and nuance. Medications DO help SOME people. And if people in our camp decide to take them for that reason, that is their choice and should be respected. I do fear long-term side effects, and admittedly have gone off medication in the past couple weeks – in part due to some of my readings on this site! But at the same time, I notice my depression has worsened – possibly as a result. It’s always hard to say what is more socially & environmentally caused versus biochemical in origin. I think we have to remember “mental illness” is very complicated and there is no ONE cause – as you all well know. For some people there is in fact a biological component. For some people there’s not. Let’s just be quick not to immediately react in typical fashion because that’s where we’re supposed to stand as a movement. That’s the same as partisan politics – and we are better than that.
This article so perfectly and eloquently summarizes so many key points that it’s impossible to know where to begin, as I try to comment. So for now all I can say is, thank you, very much, Ms. Harris, for covering this meeting and for your work in general (I just read your bi) – thank you from someone new to the movement as well as a fellow writer attempting to start covering the movement herself. I find this article immensely helpful, as well as the links you provide (I was unaware, for example of SAMSHA’s consensus statement and just printed it out. The “Open Dialogue” system of Finland is also new to me.) I will continue to follow your work and look for past writings as well!
@Kermit – thanks for the fyi! This is exciting and thanks to Mad in America for the scoop 🙂 ! I am both a consumer/client and a former journalist attempting to revive my writing career. I started learning/becoming part of the consumer/survivor (or whatever one chooses to call it) movement about a year ago, and that is how I also heard of Mr. Whitaker. I am attempting to launch my own Web site but it appears you guys have already beat me to the punch in covering news in this sector – which I’m all too happy to concede :).
This seems incredibly significant to me, is it not? NAMI is generally not regarded as being a true voice of mental health consumers, supporting policies which many clients oppose. By electing a consumer/professional as president, this appears to represent a shift. Perhaps I’m wrong, I am no expert in these issues, but given what I have learned over the past two years about the consumer/self-help movement, as well as my own personal experience, this seems like very good news.
Hi again Twilah 🙂 — Thank you for your gracious clarification. I had a feeling it was just a matter of semantics… I think you, me and Nomadic are pretty much all of the same mind, but that perhaps we just express things differently. I do think it’s particularly valuable to prove points by showing the disparate ways mental versus physical disorders are treated and named. I guess language in general just causes problems! (For a good novel on the subject, read “A New York Trilogy” by P. Auster. That’s the former lit major in me speaking, I apologize…!). I have a feeling if you and I met in person we’d be kindred spirits. Your writing style speaks to me and you’re clearly a formidable philosopher. I tried to visit your blog but the URL appears to not be working. I literally just got out of the hospital today following the last round of surgery from my own suicide attempt in the fall; which is the only reason I allowed myself the “luxury” of reading and responding to MIA today. I’m really grateful to have read your work and hope I can find time to read more soon. Thanks again.
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I think what “Nomadic” is saying is he doesn’t like using the word “disorder” in any context; he recognizes the legitimacy of any personal struggle, even if he chooses not to name things a certain way. I feel as though you are diminishing people who struggle with purely things of the mind, as I do. My struggle is anything but “clear cut” and not remotely physical. Some would dispute it. And I don’t agree with the labels which are used to classify me. But nonetheless my struggle is severe and I can’t survive in this world without help – and when it comes to the ADA, I don’t get the kind of help you do precisely because of the stigma surrounding “mental disorders.” My struggle is just as real as yours. But you seem to only view clear cut, physical limitations as worthy of ADA help. That’s what bothered me about your comment, even though I agreed with almost everything else you said. I hope you understand what I’m trying to say – because I understand what you’re critiquing and agree with you. I’m not trying to attack you, I’m just trying to make a point about the ADA, and point out that perhaps you have a bias yourself in regards to who is entitled to accommodations, however unintentional….
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Twilah – I thought your article was excellent. I really really did – and you’re a great writer, on top of a great thinker. But – I just want to make sure of one thing – I hope you’re not saying you don’t think I – a person who has been diagnosed with an eating disorder, as well as obsessive compulsive disorder – who struggles with aspects of both but who is firmly anti-psychiatry, anti-labeling etc. – am not just as deserving of ADA accommodations? Are only people with true PHYSICAL limitations deserving of it? I’m hoping you do know the ADA covers mental disorders as well? Now, I actually detest the term “mental disorder” – nonetheless, I don’t have a mind that fits in well with standard work weeks and standard work environments, so if “mental disorder” diagnosis is what I need in this stupid world to get certain benefits and accommodations (even though employers are rarely held accountable to upholding accommodations for mental disorders, and I know the literal federal court appellate numbers, because I’m contributing a chapter to a university textbook about issues related to this) – then I believe I am just as entitled to help – I sincerely hope you think so too. Because otherwise I wouldn’t have the money to buy the food I can even get myself to eat.
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Boans – I’m really gratified you finally gave yourself, publicly, credit, for saving a child’s life — you deserve that, and deserve to feel proud of that – it’s so huge! I am glad that that first point of Hecht’s resonates with you. I also understand what you’re saying about the second argument, which I tried to address to some degree in a reply to one of Sera’s comments.
Thanks for all of your comments, too — I was sorry to read last night of your plight since the truck incident. I will try to look up the thread where you wrote about it, when I have more energy; I’m a little overwhelmed with just living right now… I hope that whatever the outcome of the systemic injustice you experienced, you can find things to live for and fight for. You clearly have much to offer.
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Sera – yes, I think you hit the nail on the head. In truth I was so exhausted last night that I did not read your article as closely as I should have, and honed in on those two questions you offered. I agree we shouldn’t walk away to go march the streets when someone close is suicidal! :-). I was just thinking that, for me, the questions you offered probably wouldn’t have helped me(no offense to you — they are still much better questions or statements than most people say to someone who calls in suicidal distress). I DO think those questions could definitely help some; just not me. I guess I need to think more about what, in the aftermath of the past few months, I think could have helped. I did try calling two people when I was on the roof – neither answered… I’m not sure what would have happened if they did…. Anyways thanks again, and I will re-read your piece. You are doing great work here on Mad in America and helping all of us. Your insights are unique and profound.
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I definitely agree with your response – the “suicide is selfish” argument is something which has always infuriated me, and which I have strongly disagreed with – I think I probably am not doing a good job at adequately conveying Hecht’s book (and keep in mind, I haven’t gotten through a lot of it yet). When she talks about the contagion etcetera effect – I don’t think she is placing blame on those who do attempt or succeed at taking their lives – or, at least she’s trying not to place blame. I don’t think she realizes that she unintentionally may cause people like me to feel guilt from this argument, which guilt increases shame/self-loathing, which ironically increases the suicidal urge – because it seems clear to me she does not have the type of temperament/mind which experiences the intensity of feelings, and types of thoughts, which make individuals SERIOUSLY consider or attempt suicide, rather than just have ideation (which I don’t diminish, but there is a difference) or struggle with life’s difficulties. For me, it was the community effect that got to me — somehow the way she introduced that element in the introductory chapter, didn’t make me feel guilty. First, I didn’t know about it before my October attempt, so I have no reason to feel guilt about a possible effect on others I was unaware of and had never considered. I don’t know – I am not saying I entirely agree with her, at least not yet – but that it could be a helpful line of thought to consider. I had only thought of the “suicide is selfish” argument in terms of my family, and have always found it ridiculous. Since I am single and have no children – I am only a burden to my family. My parents still, at my age, are forced to help me far more – in a multitude of ways – than any parent at theirs and my age should have to. My pain also causes them, and my sisters, pain. As well as my acting out – and the harsh words I can say to people when I am in a bad place. So I have always believed that while I know my family may experience grief and pain initially, if I succeeded in ending my life – that in the long run it would be far far better for their lives, both emotionally and financially. And that belief is yet another primary force which plays into my thoughts when I am seriously considering suicide. So I never advocate anybody use the “suicide is selfish” argument in this way — but broaching the community effect – in a NON-BLAMING way – perhaps could help some. I know when Robin Williams died, it affected me and brought me closer to the brink of suicide — for complicated reasons (I wrote a piece about it for the San Francisco Bay Guardian, so I won’t go into those reasons here). So I do think there is a “contagion” effect to some degree. The author herself has had two friends (successful poets) take their lives – and one was apparently pushed closer to it after the first poet ended her life.
On another note, I think something which needs more attention – and if I had the energy right now, I’d write a piece about it myself — hopefully I will be able to write such an article in the near future – is the fact that there are virtually no support groups for survivors of violent suicide. Again, I don’t mean to diminish ANYBODY’s attempt – but I’ve tried to kill myself via prescription drug overdose several times over the past four years; and the aftermath of an episode like that is entirely different from what I’ve had to go through the past three months. A month or so after I jumped off my apartment roof, I tried searching for support groups for survivors of all forms of suicide attempts – there are none in my area; there are none hardly anywhere (the closest I found was in Southern California). There are PLENTY, tons really, of support groups for FAMILY MEMBERS of suicide victims – but none for people like me — because we are the bad people, right, we are the evil, selfish ones who caused our families pain – plus we’re “crazy” so society is glad to be rid of us anyways (hopefully everyone gets my sarcasm)… Anyways I touched on this briefly in my December piece too, and it is paramount that the lack of such support groups be rectified…
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I wanted to qualify my first comment, which I wrote in a bit of a rush. I was just introduced to a writer wh0 – so far; I just started the book – seems to provide the first compelling “words” for reconsidering suicidal impulses, and how right that action seems in my/our darkest moments. I hope I’m able to put these words to use, when I reach another, inevitable suicidal phase (fortunately, I am not suicidal currently). The author is Jennifer Michael Hecht, a philosopher/historian/poet whose books include “Stay: A History of Suicide and the Philosophies Against It.” Among other things, she makes two central arguments which bear consideration – 1) That suicide “unfairly preempts your future self” — that perhaps you owe yourself the chance to live to see a day when you might feel better, and do things with your life you never imagined; you owe yourself at least the chance to reach your potential, and 2) We also need to consider suicide’s effect on humanity before taking our life – apparently (I am learning) sociologists and epidemiologists have found that suicide causes more suicide – they have actually tracked suicide “clusters,” a “contagion” effect, etcetera. Hecht writes, “suicidal influence is strong enough that a suicide might also be considered a homicide… [if this is so] then staying alive has the opposite influence: it helps keep people alive. By staying alive, we are contributing something to the world.”
Hecht also talks about each individual’s value to the community – people need people… But the second argument stated above, in particular, appeals to me. I would never, ever want to play any remote role in increasing the risk another might have in taking their life because they were exposed to knowledge – whether personal or distant – of my suicide. Hecht says by simply staying alive we serve a purpose – and the conviction and despair that my life lacks purpose has always played a strong role in my suicidal urges, when I have them.
I’m grateful I discovered Hecht’s book. I’m exploring a variety of readings/research on suicide and learning much from both my experience, and the many fields which study suicide that I was unaware of (there’s even a discipline of “suicidology”!). So far Hecht provides the most convincing secular arguments I’ve ever heard to reconsider that I’m benefitting my family and society by relieving them of my burden (which I always believe, when I have the desire to take my life). Her book might provide some help in trying to know what to say – words that might actually work – to the seriously suicidal individual.
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Thank you very much for reading about my experience, saying it matters, and thank you equally for your insight about Joiner’s research, Boans. I’m so glad you were able to extricate yourself from The System – even though cost was very unjust. I hope you are in good health now.
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I threw myself off my roof top three months ago, and am still undergoing rehabilitation. I broke almost every bone in my body and am “lucky” (depends on the day) to be alive. I wrote an article about my attempt, suicide myths and research in December on my Web site, “A Disordered World” – please read it – as it addresses similar issues you raise there – including the failure to address suicide as a primarily a socio-cultural and political, rather than “mental illness” problem.
Here is the link to my article, “No room in the inn: Suicide survivors’ social, and emotional, wasteland”: http://adisorderedworld.com/?p=1355.
I also intend to pursue a more ambitious writing project on suicide, as my physical rehabilitation improves…
As a survivor of violent suicide, I don’t entirely agree with some of the discussion points you raise here – although you get a lot right. I do however take issue with the two questions you think can help people contemplating suicide. Read about the work of Dr. Thomas Joiner, which I summarize in my article. Despite being a psychiatrist – after years of research, he has boiled high suicide risk down to three primary risk factors, none of which have to do with a diagnosis of mental illness. (His father also died by suicide)> His findings resonate with my experience. I really don’t believe any words can help a truly suicidal individual – I think only remedy of social injustice, and action, can. I am told I am a brilliant writer, for example, by hundreds of people – yet no one will hire me due to my “coming out” as someone “mentally ill.” I live in poverty. I am 41, single, and will always be alone and never have children. The prejudice I experience as a result of being branded “mentally ill” and wrongly forced into the system – when 12 years ago I was a successful, high-functioning journalist – is what led me to suicide. No matter how hard I work, I cannot seem to gain a foothold in this world and make a sustainable living. My lack of agency in this world, my complete powerlessness, is what led me to do something I never thought I’d do. It wasn’t my “depression,” my “eating disorder,” or various, subjective and pointless diagnoses. You definitely bring up important and valid points — but I just want to emphasize I don’t believe there will ever be a “solution,” helpful words, or true solace for suicidal people until the prejudice and oppression we and other minorities/disadvantaged people experience ends. It continually infuriates that the “mentally ill”‘ are denied even the opportunity to be recognized as fighting to launch a legitimate civil rights movement. We absolutely need to find some way to come together – there are too many factions, among those of us who think in alternative ways about the psychiatric establishment – and launch a bonafide civil rights movement the likes of which have been seen with other minority groups.
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Thanks for this story! – it is a very important issue to investigate. I myself almost started the DBS procedure a year ago, out of a desperate hope to alleviate worsening, co-morbid OCD and anorexia. However as a freelance and former newspaper journalist I must comment on the significant need for editing in this story — I found it very hard to wade through and could only skim parts of it due to its poor flow, grammatical errors & run-on sentences, poor organization, and excessive length. I think the author is a great writer and reporter — but even the best writers need editors. I know I sure do. I only point this out because the writing problems may prevent this story from garnering a more mainstream audience – and I think that should be an aim of Mad in America. If the issues raised here only circulate among those of us who share the same views toward the incredibly flawed treatment and perception of “mental illness” which reigns in the U.S. today – then the writing here will never really help spur change. And isn’t that a primary goal of the Mad in America community? That aside — thank you nonetheless for all your thorough research and for bringing out into the open the problems with DBS treatment – problems I had not been informed of when I was considering the procedure a year ago. I also want to agree with a previous commenter’s post about the need for greater attention being paid to psilocybin research — I too agree this holds a lot of hope. I actually had a psychiatrist indirectly recommend (since he couldn’t say it outright) I try magic mushrooms myself; there are psychiatrists who are trying to legitimize/legalize the use of things like psilocybin, MDMA, etcetera in academic settings. There is also the Santa Cruz research center (I think it’s MAPS?) doing FDA approved studies. It would be great if we could help advocate that more funding go toward those studies. I understand the existential/ego separation effects of drugs like these play a big role in helping alleviate our “problems in living.” If I had the means to try something like psilocybin, I would do it in a New York minute…..
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I forgot that I wanted to add — much credit should go to “personal stories” editor Emmeline Mead, who was instrumental in helping turn the first draft of my submission into the shorter, better-flowing article which resulted above. She is very good at what she does!
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Thank you, Alex! So much of what you say resonates with me right now, as I try to work through an anger that has been consuming me for too long, and toward inner peace – accepting that some peoples’ views or prejudices will never change, some of my personal circumstances won’t change, no matter what I write, how hard I work, what degree of health I achieve, etcetera. Your point about trying to find peace within and extend kindness outward is a particular focus of mine now. Because for a long time I have, honestly, not been doing that. I’ve expressed my anger in ways which are hurtful to not only myself but others. And I feel very bad (and ashamed) when I act out in such ways. We have enough bad on this earth and it is so wasteful to add any more to it. And it always feels better to do good anyways, of course (it’s another form of empowerment, I think)… I think the self-compassion piece is also important and key to enabling loving kindness toward others and the world at large — it is hard for me to extend compassion to myself, since I am prone to deeming myself a failure at life; prone to self-hate on a variety of levels… Another issue I struggle with are “OCD”-ish behaviors which can take up many hours. And so I often feel I am wasting what valued time on earth I have; and wasting space when I could be helping others, or writing… But I digress. I just wanted to thank you as well for yet another thoughtful comment, am SO glad you could relate to it, and thank you for the kind words about my writing. (“Beautiful” as applied to anything I write is a precious word for me). The validation of both my experience and my writing helps immensely.
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Very well-put; another profound point 🙂
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I thank both madmom and Alex for your comments – you are right that we have a common denominator — and in that commonality we have power – by coming together to speak out about such injustices. That’s why, as I’ve said in another comment, I’m so grateful for Mad in America. Thank you also, madmom, for your kind words about my story – again, I am extremely humbled if it encourages anyone to also speak of their own experience. I did just try to read your first comment – but was only able to get part-way through it – your daughter (and family’s) story. I just want to say you have an incredible, incredible voice and are so very eloquent yourself! I am completely blown away at how you are able to view your daughter in a way opposite of the majority of mental health professionals – how you can see through their labels to the profoundly unique, gifted individual she is. You should definitely write more and get your story out! I am also wondering if you’ve read Ethan Watters’ “Crazy Like Us” – he looks at how “mental illness” is viewed in other cultures. I found the chapter on schizophrenia particularly helpful – in that in places like Zanzibar they don’t see that “illness” as we do in the Western world. At any rate I will try to finish reading your comments when I get a chance.
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Please don’t apologize! I am SO happy if my story helped enable you to voice your own story! I think the “personal stories,” section editor might be interested in a submission from you. I am interested myself in your experience, I just haven’t had the time to fully review all of yours & others’, subsequent comments, due to their length and me having other things to attend to as well, the past couple days. I really feel for you, and admire your courage in trying to help your daughter, and fight for better alternatives, as well as immensely respect your understanding of her experience. That is not always the case with parents. I am lucky in that my parents have come to be as supportive and understanding as you. Your daughter is lucky to have you on her side. I encourage you to submit your own “personal story” article as I think it could help you and your daughter a lot. And, it’s always (as I write in my article), empowering to write about one’s experience.
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Dr. Hoffman – thank you so much for your thoughtful comments and your understanding of some o the the forces really behind “mental illness.” Your patients are lucky to have someone like you to help them. I of course agree with what you said. I had another quote in the original draft of this article which had to be cut. It was from J. Barchillon in the preface to “Madness and Civilization”: “The roots and symptoms of folly are being looked for today in psychology, medicine, and sociology, but they were still and are as present and important in art, religion, ethics, and epistemology. Madness is really a manifestation of the ‘soul.'” I think that quote gets at similar points you made. The quote from your patients is also really powerful (and, in a way, beautiful). Thank you again.
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I think it is great you all have a space to talk in, but perhaps it might be more productive to continue this conversation in an MIA forum? Keeping comments on an individual article on-topic helps better-foster discussion of that article’s themes. I think madmom and other people who’ve commented on her situation are discussing very important things, but it’s also hindering further discussion of some to the topics I was trying to raise. Thanks 🙂
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Julie – I’ve received only welcome arms and positive comments on MIA, and from their staff as well. MIA has been the most wonderful refuge for me, as compared to the writing I’ve tried to spread to ED folks…. On that note I am largely in agreement with you as far as the ED world goes. Again, it is amazing to me that consumer/survivor groups and movements are nary to be found in ED-land. And yes it’s not like advocates or professionals are bad or doing things purposely hurtful – they are just used to dismissing us as “mentally ill” individuals with malnourished, broken brains, people who obviously shouldn’t be taken seriously. I think its perhaps the combination of “mental illness” with “malnourished brains” which makes it particularly difficult to spread viewpoints like ours in the eating disorder community. (We do need to connect more to help make that happen. I’m just always so overwhelmed 🙂 and behind on things… !)
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Hi “bpdtransformation” – Thank you; your comments are very on-target. To answer one of your questions – yes, atrocious things are occurring (imho) in the ED Tx world. For-profit, residential treatment centers are presented as first-line treatment to vulnerable women and families who don’t know to dig deeper or ask questions. They claim to use “evidence based treatments” but don’t, and none of them track outcomes to demonstrate whether their treatments actually work. The centers can perhaps help some women with less complex “eating disorders” (a label I don’t subscribe to), or women who have struggled for very short amounts of time. But I know many more women who get sucked into the revolving door. It is amazing to me that a completely unregulated, private industry is touted as a science-based, guaranteed path to health. And things are poised to get worse as a pending federal bill would mandate coverage of private, for-profit residential treatment in all states. While parity can be a good thing – that’s not necessarily so when it’s mandating coverage of an unproven treatment – and even worse, a treatment which often does more harm than good…. Anyways, I could go on at length about the subject, but you can see my stories on the industry here: http://adisorderedworld.com (that’s my site). I applaud you for speaking out and being a “whistle blower” as well! It is SO hard. Hardly anybody in the insular ED world gives my points any credence – even though I am always careful to back claims and stories with an abundance of research and voices from academia and the like (while they are not necessarily the true “experts” – I do this in my attempts to be taken seriously. But alas it still doesn’t work). The brain-based model predominating, is a huge problem in the ED field right now, too — almost all the funding goes to gene studies, etc. It drives me crazy… As far as the Black Lives Matter movement goes – I’m not informed enough on some of the extremists’ tactics to comment. I am hoping the people you speak of are the exception rather than the norm. Most of the coverage I’ve viewed are citizens participating in peaceful, nonviolent civil protest which does not use such slanderous language. I wouldn’t condone anything else. Thanks for reading the article and your comments!
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Julie – I always value your comments. You have such wisdom to share – and with such eloquence. Thanks, too, for reading my writing. I know you can relate to it on a special level. It’s always helpful to me to know you’re out there, writing on similar themes. I think the self- harm issue is very interesting – its origins are different for everyone. I certainly never expected myself to engage in such a thing. And it has served a very different function for me than for most people I was in ED treatment with…. It’s unfortunate that so many mental health professionals don’t understand the subtle forces behind such acts, and how different it is for everyone. I’m really glad you found writing, too, and continue to be impressed by your blog, your books – and your MFA (something I always wished I could have obtained, but have never had the means or ability to do). Thanks again!
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Thank you Darby – that my article resonates with you means very much to me. I hope you are doing well in your survivor journey, too.
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Thank you for your words, B. I think that anger is a starting point to breaking free of false messages we are indoctrinated with – but I also see how I have allowed anger to sometimes consume me in unhealthy ways. So I am trying, currently, to work through that anger — work to change what I can, and accept that certain things can’t be changed – or at least not in my lifetime. That’s not to say I think any of us should passively stand by – but that I have to find ways to fuel my anger in different ways, and find acceptance – when things I write aren’t heard or acknowledged, when change doesn’t come, etc. — to realize that systemic change takes decades if not centuries. That is hard thing for me to accept, since I often feel so powerless. But if I can learn to be ok with the fact that my speaking out may only have a small impact in a small sector of society – but that that’s at least something, that at least I tried – it will help me lead a more peaceful life. I don’t know if that makes sense. I’m admittedly a little sleep-deprived today so I apologize if I’m not replying coherently 🙂
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Hi Steve – thank you for your thoughtful and validating response, as well say our kind words. It also makes me very glad that this article resonated with you, and “inspired” you :-).
I don’t know that I can touch on all the interesting points you raise – but in regards to your comment about whether the referred-to “normal” people are really “normal” (a term I have problems with anyways) — No, I agree with what you’re inclined to think as well. One of the few outside-the-box psychiatrists I was priviliged to once see, read me a quote by Aldous Huxley, who put it like this:
“The real hopeless victims of mental illness are to be found among those who appear to be most normal. Many of them are normal because they are so well adjusted to our mode of existence, because their human voice has been silenced so early in their lives, that they do not even struggle or suffer or develop symptoms as the neurotic does. They are normal not in what may be called the absolute sense of the word; they are normal only in relation to a profoundly abnormal society. Their perfect adjustment to that abnormal society is a measure of their mental sickness. These millions of abnormally normal people, living without fuss in a society to which, if they were fully human beings, they ought not to be adjusted.”
I think that is right-on, don’t you?
I think you make several important points about children – and that the way they are treated then can unfortunately lead to unfortunate consequences as they come into adulthood – for example, them too also falling victim to being branded with various DSM labels, forced into treatment etcetera. But I would need to give that subject more thought to reply to it effectively right now.
Thanks again for reading the article, and contributing to what I think is a critical discussion! Your enthusiastic words have inspired me as well.
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Sera – my site is http://adisorderedworld.com – I would welcome your feedback. What is mind-boggling to me is that consumer/survivor/peer-support etc groups & movements are totally absent in the ED world. EXCEPT there is one fantastic research-psychiatrist in Australia, Stephen Touyz (who I’ve written about), who is trying to bring recovery-oriented models of care to the ED Tx field… Have you heard of people like Patrick Corrigan, labeling theorist researchers etc (they are cited in the article I posted this weekend on m site). You don ‘t have to only refer to personal/anecdotal examples as evidence of the rampant discrimination/prejudice which exists. There is quite a lot of good research into this… I just find it more useful in countering establishment thinking when I can cite that type of stuff. I have gotten a prominent outlet interested in some of the issues I’ve investigated, largely because (being a former newspaper reporter myself) I write the way they write – but about anti-establishment ideas. I don’t see much change occurring legislatively – but if we can get issues into mainstream media I think there is a greater chance of swaying at least some minds.
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Oops – I meant to say “Alison Parker’s father” not, obviously, Alison Parker
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Sera – I was delighted to read your article; it is so timely as I am currently writing about many similar things myself. I have a upcoming post here on Mad in America that touches peripherally on some of your themes, but I write more about them on my own Web site. I just posted a column actually which cites some of the very real empirical evidence – conducted by university-based, social psychologists – about the discrimination those labelled “mentally ill” experience. When you compare how our rights are not given the same credence as the physically disabled, under the ADA, things become even more telling. My recent column stemmed from Alison Parker’s derisive use of the word “crazy,” and his (and others’) constant conflation of violence with mental illness. Your frustration with advocacy organizations is something I very much share, in particular as it relate to one of the disorders I’ve been branded with, an “eating disorder.” Orgs like NEDA etcetera are ostensibly supposed to be working for the benefit of us – but in reality they are funded by the for-profit treatment center and give us no voice whatsoever. I have tried tirelessly to be heard by then and parent organizations (who are particularly narrow-minded in their views, and constantly emphasize the “brain disease” model of mental illness, because they are so terrified of being blamed for their children’s “disorder” – when obviously emphasizing environment does not necessarily implicate parents). I would love to connect with you more; you might be interested in reading some of my writing on my site and my forthcoming post for MIA (which hopefully will go up today). At any rate, thank you again; your post was very insightful, well-put, informative, and ends with a similar call-to-arms that I conclude my latest blog post with. I look forward to reading more of your work.
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Julie — We seem to be of similar minds. I think discussion of a different – and certainly more compassionate/empathic – approach to treating eating disorders is much-needed and rarely discussed – or realized – in nearly all sectors of mental health practice/research/writing. I recently started writing a series of investigative stories about the eating disorders “residential treatment industrial complex” that was linked to in the “Around the Web” section here; among other things, the first article in the series mentions how some alternative treatment approaches being used in places like Australia are proving far more effective for individuals battling long-term eating disorders, and in particular anorexia (I’ll be discussing those alternative approaches at more length later in the series). I would love to connect with you…. I will visit your Web site too. I’ve looked at a couple of your articles on Mad in America today, and your experience and viewpoints very much resonate with me. In addition to joining Mad in America as a semi-regular blogger, I have recently been trying to think of ways to help bring about concrete change in the largely-abusive forms of treatment almost uniformly administered to individuals branded with an “eating disorder” diagnosis, so am looking for like-minded people to team up with.
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It is so amazing to see a major news outlet cover this! Thank you for posting. My former graduate MSW advisor, at San Francisco State University, created a program – called the “Student Success Program” – to provide wrap-around and preventive services to students, and to promote an inclusive, safe, validating environment (among other things). It is completely Recovery Model-oriented. I was lucky enough to help give input into some of the program design. Here is the link to anyone interested: http://studentsuccess.sfsu.edu. SFSU
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This problem goes beyond the RCTs that are being conducted. A far larger problem, from my experience, is the dearth of RCTs which should be occurring on programs our health care dollars are paying for — i.e. failure to track outcomes on for-profit, mental health treatment programs – i.e. residential eating disorder centers, substance abuse centers, etcetera. It’s one of the biggest flaws about the fact that the U.S. is the only industrialized country which lacks socialized health care. Go to Canada – it’s illegal for anyone to just open up a private mental health facility there and claim expertise they may not have. There is far greater accountability and oversight, and most programs must report outcome data, because they are funded by the government. There are drawbacks to socialized health care, yes (waiting lists, etc.) – but at least you know you’re getting evidence-based treatment in Canada. You’re, for the most part not, if you are receiving treatment from a private mental health care provider in the U.S.
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“Passive-aggressive” is someone who doesn’t have the guts to put his real name on his MIA registration, “oldhead.”
I stated my point respectively, unlike you. If I have to read multiple, run-on sentences many times over, to make any sense of an article – then very important ideas like the above are never going to see the light of day. If it didn’t take hours to decipher the article I would have shared it via social media with my network of friends and colleagues – who include prominent journalists.
If you don’t know what the “consumer movement,” “self help movement,” “ex-patients'” movement etc are — then it seems you are just spouting opinions rather than doing the research necessary to inform the wider public – in a way that will make people actually listen – on what is so screwed up about how we treat, view and “diagnose” the “mentally ill” today.
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It seems like you have very important facts and arguments to present here; however I could not get to the end of the story due to the quality of writing. I don’t mean that as a criticism. I am passionate about these issues too, but as both a journalist and a mental health consumer, I know how important it is to write such pieces succinctly and cogently – in order to gain a wider audience. I highly encourage you to seek an editor in the future.
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I need to read this study but as someone who has struggled with chronic, severe anorexia for more than 20 years, I want to hesitate people to not jump to conclusions. It appears this study does not look at Abilify, and that the mean age is fairly young. I am 38 and recently found help from a combination of Abilify and Zoloft. I go back & forth on the merits of psychotropics – I both fear them and put hope in them. I still have yet to decide where I stand. While people in the recovery movement are quick to jump on the anti-medication wagon – and for good reason – I just would like to ask that we approach this subject with balance and nuance. Medications DO help SOME people. And if people in our camp decide to take them for that reason, that is their choice and should be respected. I do fear long-term side effects, and admittedly have gone off medication in the past couple weeks – in part due to some of my readings on this site! But at the same time, I notice my depression has worsened – possibly as a result. It’s always hard to say what is more socially & environmentally caused versus biochemical in origin. I think we have to remember “mental illness” is very complicated and there is no ONE cause – as you all well know. For some people there is in fact a biological component. For some people there’s not. Let’s just be quick not to immediately react in typical fashion because that’s where we’re supposed to stand as a movement. That’s the same as partisan politics – and we are better than that.
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This article so perfectly and eloquently summarizes so many key points that it’s impossible to know where to begin, as I try to comment. So for now all I can say is, thank you, very much, Ms. Harris, for covering this meeting and for your work in general (I just read your bi) – thank you from someone new to the movement as well as a fellow writer attempting to start covering the movement herself. I find this article immensely helpful, as well as the links you provide (I was unaware, for example of SAMSHA’s consensus statement and just printed it out. The “Open Dialogue” system of Finland is also new to me.) I will continue to follow your work and look for past writings as well!
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@Kermit – thanks for the fyi! This is exciting and thanks to Mad in America for the scoop 🙂 ! I am both a consumer/client and a former journalist attempting to revive my writing career. I started learning/becoming part of the consumer/survivor (or whatever one chooses to call it) movement about a year ago, and that is how I also heard of Mr. Whitaker. I am attempting to launch my own Web site but it appears you guys have already beat me to the punch in covering news in this sector – which I’m all too happy to concede :).
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This seems incredibly significant to me, is it not? NAMI is generally not regarded as being a true voice of mental health consumers, supporting policies which many clients oppose. By electing a consumer/professional as president, this appears to represent a shift. Perhaps I’m wrong, I am no expert in these issues, but given what I have learned over the past two years about the consumer/self-help movement, as well as my own personal experience, this seems like very good news.
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