Using “illness” terminology for psychic disruptions minimizes the real suffering people endure.

“What? You don’t think mental illness exists? How dare you! Don’t you have any understanding of how much people suffer?”

I get this kind of feedback regularly.  There is a basic flaw in logic here, which I often have trouble explaining to people. I, too, suffered horribly. I had a lot of trouble getting MH professionals to take me seriously, especially during the first few years of shrinkage. I have concluded that not only did they theynot listen well, but they were unable to assign my problems to a specific “illness.” For this reason, I was told that my complaints were trivial and my case was handled with lowest priority.

While, agreeably, calling whatever ails you an “illness” will get you medical insurance coverage for appointments, and it’s necessary for coverage, you are otherwise doing yourself a disservice by labeling your suffering according to someone else’s category. We are human. We aren’t categories.

Many feel validated upon receiving a diagnosis. “At least, since it has a name, I am not alone in my struggle. Maybe since others suffer as I do, there are answers.” 

Know that assigning a name to your suffering can cause it to take on a life of its own. If you are to name it, why not give it some original name of your own choosing that more accurately describes your experience? Be aware that the assigning of a name puts limits on what is unique to you. These “illness” names have industry standards, and box you into a category.

Thomas Szasz pointed out that once a person receives a diagnosis, they “become” that diagnosis more. When I went into MH “care” back in the early 1980’s, I met many traditional shrinks who strongly agreed with Szasz on this point. In my experience years ago, most patients were unaware of their diagnoses and didn’t care. Now, you meet someone, and they’ll tell you, “I have PTSD, DID, BPD, bipolar….” The list can go on insanely long. I look back now, after many years, and realize that diagnosis alone destroyed these patients’ lives. Diagnosis and its “treatment” demands that patients become hyperaware of their symptoms, chart and graph them, dissect them, analyze them, number then from one to ten, and believe wholeheartedly that this is the New Life and they’d better accept it.  

For many of us, we heard, “You will be in and out of hospitals for the rest of your life. There’s no cure. You can only be managed. And you must remain in treatment indefinitely.” None of us had any clue just how damaging this statement was.

If you believe this, then I ask you one thing, “What if it were not true that it’s forever? Since when can anyone make this determination?” I don’t know any real psychics out there who can so reliably predict the future. Nor have I ever heard that psychiatric training will increase one’s ability to fortune-tell. Why? there’s no actual physical evidence of “disease.” There may or may not be physical consequences (such as scars on one’s arms) but these aren’t a disease. An oncologist might tell a patient he or she doesn’t have much chance of surviving a serious cancer. This is because the tumors are often visible and the rate of growth is measurable. No one can predict how terrible your depression will be in a year or five years or ten years. Depression is like physical pain, not one person can see it or feel it except the sufferer.

I have known people who were suffering unbearably but were told they couldn’t possibly be suffering since it didn’t fit their diagnosis. Has that ever happened to you? Or, upon reporting an experience, has your shrink then reframed that experience in terms of your assumed diagnosis? 

Look at your life and define it on your terms, not theirs. Let me tell you how I figured out I am by all means not “bipolar” as was claimed for many years.

I reported ups and downs.
I reported feeling depressed.

By all means, these were things that in the simplistic minds of these shrinks, they could grasp. They decided I had bipolar based on the above two statements (and presentation thereof) and that alone. However, they trivialized my other statement and refused to listen: “My biggest problem is with my eating.”

Indeed, my life went like this for years, a life they assumed was bipolar, but wasn’t. Since they ignored my binge eating problem, or downplayed it, or flat out had no understanding nor grasped the severity of it, they had no clue that this uncontrolled habit, alternating with restricting my food intake, were running my life all those years.

If I couldn’t get the binge eating to stop, I became despondent, slowed down, lacked energy, and was often too physically ill to leave my bed. At its worst, I’d have feelings of wanting to end my life.  Looks like depression, eh? If I could get the binge eating to stop, I felt terrific. Using the word “terrific” in a sentence invariably got me the response from shrinks that I must by hypomanic. I wasn’t. If I ate too little, I’d get spaced out and giddy. That’s how I ended up labeled bipolar. 

As soon as they told me I was bipolar, I was told to rate my moods on a scale of one to ten.  I was told I had to manage symptoms. This instilled in me that I had this “disease” and would require “treatment” for the rest of my life.

Sure, people manage their problems, and would want to, but mine weren’t “mood disorder.” There was no disorder to manage, and my so-called symptoms were caused all along by the underlying problem the shrinks refused to acknowledge.

This wasn’t the only way my real condition was ignored. After ECT in 1996, I suffered from damages caused by these shock treatments. Instead of acknowledging that the ECT was the cause, I was given a new diagnosis to explain the cognitive confusion I experienced, so the real cause, medical malpractice, would be forgotten. I never had a personality disorder. Sadly, I believed this diagnosis for a few years and played that role, too, until a therapist dropped it from my record. This was not even my request. She told me later that she didn’t see that I was BPD at all, and didn’t understand why it was on there, nor did anyone else. I no longer had those ECT-related problems that they claimed were “dissociation,” have not had this since nor have I had to deal with that false diagnosis.

I did experience cognitive problems in 2011, however, these were caused by a drug and ended when I stopped that drug. The drug was called Trileptal. If you go to forums, you will read about “Trileptal fog” and “swaying” on one’s feet, which are common side effects. Many at the forums I peeked at reported similar experiences to mine, such as mental confusion, lack of alertness, and instability on one’s feet. This was when I realized, after stopping Trileptal and waking up, that this drug had been the cause all along. 

What is it about turning people into basket cases that causes society to turn its back?  I lost my two best friends right after I was put on Trileptal. Did they consider me a “lost cause”? “Damaged forever”? “Gone downhill”? I suppose  I’ll never know.  I was super confused but in the back of my mind, something told me it was all temporary. I begged others to have faith in me, but sadly, most didn’t. I could barely put a sentence together during those months. It was at that point that my abusive therapist, unaware of what the real cause was, took steps to put me into the state hospital. Everyone around me, and myself included, wanted to put a disease name to what I was going through, when truth was, it wasn’t a disease, it was a drug reaction! 

I feel saddened that the consequences were so dire that I feared loss of my freedom, loss of my home, and separation from my dog, permanently. I feel saddened that a drug reaction was basis for their determining that I “couldn’t manage” when all I needed was to stop the drug. They used the confusion I experienced as more fuel for their fire. You can see why years in the MH system led to diagnosis disaster for me, simply because my original complaint went ignored too long.

What about you? I know some people tell me they “fit” their diagnoses to a T. I’m okay with that, but why call it some predetermined label? If you do, you raise the chances of permanence or long-term problems that might otherwise last only a short time, and even dissipate on their own. Sadly, many who embrace these labels remain incapacitated to some extent for life. Those that reject the label and still address their problems (without addressing them as “illness”) tend to fare well. 

I don’t encourage ignoring a serious problem. I agree that problems tend not to go away unless you deal with them. Handling a serious problem may involve getting traditional “help” or something else. Dealing with whatever ails you, unique to you, without categorizing your experience will undoubtedly be more productive than trying to fit yourself into a psych diagnosis. In my opinion the most important and significant thing is getting others to take you seriously, no matter where you are in life.  You don’t need to call yourself “sick” to do that. This was one of the most incredible lessons I ever learned.

28 thoughts on “Using “illness” terminology for psychic disruptions minimizes the real suffering people endure.”

  1. Julie – the pathologizing of experience that’s deemed “abnormal,” when it’s our society that is sick (not us) is a topic very important to raise awareness about – thank you. As I think you know I’ve written about this on my Web site (http://bit.ly/1EXfNQP) – I also wrote the following research paper in grad school (you can see it here: http://bit.ly/1IqHSYo) which talks, among other things, about the prejudice and discrimination people with DSM labels face – and how labelling exacerbates one’s struggles, creating a self-fulfilling prophecy etc. It relates to a field known as labelling theory – Patrick Corrigan has done a lot of great work in this field. Ethan Watters’ “Crazy Like Us” also takes a great look at the relativity of mental health diagnoses from a cultural anthropological perspective…. I wanted to let you know i’m following your blog and while I can’t always read every post, it very much resonates with me. You are a much needed – and very eloquent – voice in our community and I’m so glad your blog is public again. I have an upcoming piece in Mad in America that I think you’ll be interested in as well – it relates in part to some things you discuss above, but also draws in Bordo, Foucault, and the perpetuation of power dynamics at the micro level…. Finally, I just created a Tumblr account to have a space to post quick rants of thoughts and would be interested in your feedback on this “revelation” I had yesterday: http://tmblr.co/Z8BAgj1sJxlQ4
    (p.s. Have you read C. Garrett’s “Beyond Anorexia”? I think you would find it right up your alley if you can get a hold of it. It is out of print and I don’t have a copy myself but took a lot of notes on the book when I borrowed it from someone a few years ago)

    1. Jeanene, Thanks for your insight and input. I’m so happy you are speaking out in MIA. I’ll go check your recent post as well. I alerted my readers to your important work. I would love to know who else of survivors of ED “treatment” agrees with these statements? For years, I couldn’t find anyone and only recently have activists surfaced who aren’t parity pushers but folks that want real change. I believe we need to see to it, if we can, ini any way possible, that the inhumane treatment of ED end. Period. When it comes to saving human life, I don’t think we can even consider half-measures. Inhumane treatment kills. Addressing the problem with kindness, openness, and compassion is the only way to truly address it in a helpful and productive way.

      1. Julie – I will reply in more detail later or email you – but yes I have, since publishing my articles, come into contact with some ED treatment consumer/survivors who feel as we do. If you could get on Twitter and Facebook it would be easier for me to connect you with those people…. There aren’t a TON but they are out there. And I’m sure there’s more I haven’t heard from. There’s other news I’d like to share with you in private which could significantly help make progress in our cause this fall. More soon 🙂

  2. I would just like to add to your lovely post one comment… Um… Trying to think of how to put this… It is as though society is blaming the individual for their pain, right? Like its all your fault somehow and you are the problem. Not the traumas you are experiencing or have experienced, not the pain you are suffering. No. There is something fundamentally wrong with you… And it is your fault… Circular logic. Dehuminising. Horrible. -TJ

    1. Yes, true, and we see that with physical pain as well, which also cannot be measured. I think of the societal blaming as two-fold: 1) Angry people needing a scapegoat, and 2) Gang behavior. Who does hate crimes? Almost always these are done in groups of people, rarely one person acting alone, although we did see this in the vigilante/gated community crime in Florida a while back when a black teen wearing a hoodie was shot and killed. Hate groups are groups and together they have more hate in them than the sum of their parts. Often, outside pressures intensify the witch-hunt like atmosphere, for instance, stress from poverty or difficult climate, crops not growing, drought or flooding, overcrowded conditions in the community, outbreak of disease, or an oppressive governing body. It would logically seem that these stressors influence hoe kids are raised as well, though I am not sure all anthropological studies would support this. People are not born hateful nor is there such thing as a hateful or angry personality. If a person feels angry, then he or she is reacting to something. We need to pay attention and respect each other.

      1. Agreed. It seems to me you are awake to reality and aware. And perhaps angry about the injustice of it all… And.. rightly so. I like that. I too try to pay attention every day. There are so many complex and interlinked influences that come into this business of being human. And pain… Pain is a part of living. Living is terrible and wonderful. In my opinion, that is 🙂 And my opinion comes from my own perspective. … I am glad to have connected with you. -TJ

      2. That isn’t possible, is it? “One thousand” is two words. Since when can a fish and loaf of Wonder Bread feed the entire village? They must have Photoshopped that one. Or given the masses food stamps or a rain check.

      3. Anything is. Not necessarily probable, but since when can someone not be one of the minority? I have blue eyes, and among humans, that’s in the minority, too. I still ended up that way anyway.

      4. I don’t know, maybe one in four have blue eyes, but I’m not sure. I’ll bet fewer are left-handed. Honestly, why should anyone use the WRONG hand? To me, it looks odd, awkward, and makes me dizzy seeing anyone do things backwards like that.

      5. It’s inconceivable to me how anyone can do anything southpaw. Likewise, folks in AA might argue that a non-alcoholic can’t fully grasp what alcoholism feels like. Empathy is bullshit, in my opinion, especially when it comes to hired listeners such as therapists. If they claim to understand, even claiming they know better then their clients, then I’d say it’s a good idea to stay away, and spend your money elsewhere.

  3. Two years ago I was pretty much made to go back to my community mental health center for “treatment” as the psych I was going to was leaving her practice. My first meeting was with a therapist, a person with a master’s degree, who stuck a label on me after only knowing me an hour and a half. The psych there then agreed with the label and added another one plus some other things. I must have 100 Axes on my dx…if I really had all the labels they insist I have, I could do nothing for myself. I’m just an inconvenient person who has suffered bad family dynamics and trauma who they want to file away and take away their power and freedom. I think I have Asperger’s Autism but putting that “other” label on me makes me look dangerous and mentally slow and virtually worthless. Oh how I wish I could make money somehow and escape psychiatry.

    1. Tell them about that fake attorney you’ve got tucked away. That might give you some protection unless they call your bluff. I have fibbed on a few occasions and mentioned my imaginary attorney and have never gotten called on it. They tend to back off and look real scared if they believe you. If not, they roll their eyes rudely.

      1. I used their facilities voluntarily. No one made me. I just happen to be addicted to benzos since the days my anxiety got really bad. If they sold the buggers on the street I would have said “bye” to my old shrink and went my merry way. Telling that therapist about an attorney would not have changed her “diagnosis” I don’t think. I’ve been diagnosed with everything from depression, to borderline, to schizotypal disorder to schizoaffective disorder along with paranoid disorder. The deal is to make me look like a useless eater–someone not needed.

      2. That’s the worst feeling, when they make you feel useless, stupid, and of no value to others. It’s not true, but shrinkage can wear on us that way. They pound it home how incapable we are. For most of my shrinkage history, I recall very few “got better” enough to attend college again, since education was discouraged. According to most of my shrinks, I was only worth a part time, minimal job, that didn’t require any skill or talent. It was a horrible insult for them to state that college was “too advanced” for patients, since many of us had already excelled at it (probably better than “they” did, since as I hear, those that specialize in psychiatry tend to be on the bottom of the class academically much of the time).

      3. Here, in our MHC they don’t discourage school or vocational training, but, they act like you are no one without meds. I got a GED and then finished college after the initial hospitalization.

        Your shrinks were crazy to think you were incapable. I mean, you wrote and published a BOOK! I have heard that the slackers in med school become shrinkers. I’d not like to think that of my shrink, but you never know.

        I was actually encouraged to stay working at first before I got my benes: they said I’d hate it on benes and I do. I could not live without health insurance, though and temp and food service jobs despite my degree did not offer me medical. I had only one job that did and it lasted only 2 years.

  4. Some of us gain loads of weight on the psych drugs that takes us YEARS to shed and causes us permanent health problems even if we do eventually lose most of it. Women, in particular, suffer enormous obesity-related illnesses because these poisonous psych drugs ravage our “complicated” reproductive health organs. Don’t forget us fat-asses!

    1. How could I forget? On Seroquel, I weighed close to 200 pounds! I’m only five foot one (155 cm) so 200 was plenty too big for me. I do think that gaining tons of weight too rapidly and unnaturally (such as from a drug) is harmful to one’s body. I couldn’t even walk for about three months while I was overweight. I had to use a wheelchair and was a shut-in the entire time. I cried over it every day. Even losing the weight afterward I still have damage to my body from being oveweight. Rapid weight gain causes your body to overproduce estrogen and that can wreak havoc.

  5. Those “diagnosis” are pessimistic and discourage people from making positive life changes or becoming better people. For a while I acted totally insane and ran amok. Chalk it up to “good insight.”

Feedback and comments welcome!