Monday, July 12, 2010

The pitfalls of accepting your diagnosis and telling everyone about it

Gianna Kali has reposted a 2007 opinion piece today by Furious Seasons' Phillip Dawdy where she takes eloquent issue with his opinion that accepting your diagnosis is mandatory on the road to recovery. This idea of accepting your diagnosis is widespread and the thinking is that you are delusional if you do not. Today, many people proudly proclaim that they are their diagnosis. Coincidentally, more and more people have that diagnosis. Wearing your diagnosis goes beyond what the Dawdy piece is saying, but it's a slippery slope. Accepting can become defining.

In mental health, pardon my ignorance, but what exactly is the basis of the diagnosis? There is no test for schizophrenia, no gene, and no drug fixes the problem, so what is it exactly that is being medically diagnosed?

A mental health diagnosis is not a broken leg. A mental health diagnosis is a sliding opinion underpinned by dubious science.

After you've accepted this diagnosis, then what? Will you be open to accepting any label that someone else sticks on you? I could have spent years urging my son to accept his diagnosis, but that would have done more harm than good, in my opinion. In fact, at the beginning my husband and I did urge my son to accept his diagnosis, because this is what the doctors told us Chris must do. In another post I wrote that accepting your diagnosis when you are labeled schizophrenic is akin to a teacher telling you that you are stupid, but if you want to learn you'd better first accept the fact that you're stupid. Any learning you manage to accomplish after that will be the result of an heroic struggle at the expense of your own stupidity.

Robert Whitaker's book has pointed out the pitfalls of becoming your diagnosis: Lifelong patienthood.

If I had it to do all over again, I would never have told a soul that Chris had been given a diagnosis of schizophrenia. I don't know how I would have fudged this the past six years when anyone could see he had a problem, but I was operating under the delusion that there is no stigma in being mentally ill and the first thing to do is to accept your diagnosis. I also felt that if I told people, I could learn things from them that would help. In fact, most people haven't a clue, and I had to do all my own discovery.

It hit home again at lunch today. My friend wanted to know how Chris was doing as she had seen him on one occasion last year when he was on a day pass from the psych hospital. Ian and I had foolishly decided to take him to a special interest group lecture and he spent the time being rather unusual. (Word to the wise. If your relative is out of the psych hospital on a day pass, best stay home.) My friend expressed surprised that (a) Chris actually can read books and (b) that he was able to travel around freely by train. Like most people, she has no clue what a diagnosis of schizophrenia entails, but like most people, she thinks it's lifelong and handicapping. My father went to his grave feeling sorry for the burden that he felt I was going to have to carry the rest of my life. He also had no experience with mental illness beyond what the doctors say about the awful label of schizophrenia. My trying to convince my father otherwise was an exercise in his humoring me. He felt I was putting the best possible polish on a bad situation with my talk of Chris eventually leading a productive, interesting life.

It would be far better to reject the idea of accepting your diagnosis, but be willing to admit, as the Dawdy article puts in a more secondary light, that what you really have is a "problem." That's a diagnosis you can overcome.

Readers may ask, so why is it then that you put schizophrenia front and center in your blog if you reject the label? The answer is so that other people can find their way after they've been handed this label.


  1. Readers may ask, so why is it then that you put schizophrenia front and center in your blog if you reject the label? The answer is so that other people can find their way after they've been handed this label.

    exactly why my blog has the URL it has (bipolar blast)...though I have bought

    it's a bit of conundrum...I don't like having it there...but it did it's job...

    the thing is I get called bipolar all over the damn blogosphere and I don't bother correcting's too much of a headache. Perhaps I'll look into changing me URL now... :-)

    thanks for sharing!


  2. I wanted to show you this article that introduces schizophrenia as a brain infection making it a brain disease, not a psychological behavior. The researchers say the infection is triggered by a retrovirus called HERV-W. This may also explain the birth month effect of those with schizophrenia. “One study found the HERV-W virus in 49% of people with schizophrenia, compared with just 4% of healthy people.” Understanding this virus may also be instrumental in understanding MS and bipolar as well.

  3. Gianna, as I like to say, if people think you are bipolar, at least it's a step up the food chain from schizophrenia!

    Jules, thanks for the article, which is about E. Fuller Torrey's research into feline viruses, amongst other things. Maybe he will eventually be proved right, and let's then hope he also comes up with a solution. Fuller Torrey puts me off because he seems so determined to cast schizophrenics as actors in grade B picture horror films.

  4. The best way in accepting the psychiatrists
    diagnoses is to say nothing / nod your head.

    After appointment once on your own (comment
    to yourself "WOT AN FOOL" at same time make sure you have date time of next appointment.

    If have schizophrenia /get on your knees in give thanks to Almighty, it a vital symptom
    of adaptation that made to the brain in its development / thus in allowing for a better hard drive / far more capability to receive knowledge /the best security firewalls / as
    able receive auto inner dimensional updates.

    In time people will go to the doctor where
    saying my mum has schizophrenia my brothers
    have schizophrenia all having SCHIZOPHRENIA but me /it not fair" I WANT SCHIZOPHRENIA".

    Doctor/ we can't just go give SCHIZOPHRENIA
    where ask for SCHIZOPHRENIA it needs earned
    it cant be handed out as sweets all must be patient /SCHIZOPHRENIA in time comes to all.

  5. There you go, a wonderful example of untreated mental illness, right here in your own blog.

  6. Rejection of the diagnosis and not acceptance is integral to recovery.

    While the viral theory is interesting, clearly embedded in it, is the advocation that yet another drug is the key.

    I note the strong association with MS in the argument. The article does not appear to acknowledge that recent discoveries with MS by Dr. Zamboni postulate that constricted blood flow is the culprit and that angioplasty resolves the condition. Though premature conclusively perhaps if there is any substance to Zamboni's finding then Torrey will need to recast his argument absent the MS viral correlation.

  7. Jules - Don't equate us foreigners and non-native speakers with being mentally ill! Please. You're bigger than that, surely. Also, I haven't seen anyone write anything about untreated mental illness here. Drugs and treatment can be two different things. My blog definitely advocates treatment but chosen from a variety of sources.

  8. Non-compliance is healthier than compliance any day of the week. When a person walks away from mental health treatment rather than towards it, you've got one less person in the system. "Mental health", in fact, is a matter of being outside the auspices of the mental health, or as I like to call it, the mental health/illness system. Staying with a treatment plan over a long course of time equals chronicity. If a person is in treatment, a common way to improve one's health, or "cut to the chase" to use movie parlance, is to decide to leave treatment.

  9. Sometimes the shrinks aren't upfront at all with what they diagnose you as. I know. I had to see mine in files my lawyer was presenting to the ALJ. I guess I wasn't supposed to see it. And I think I have a right to be irate that the shrinks didn't share it with me. But it was something I had already pretty much figured out.

    One time I was committed to a state mental hospital for 90 days. There they told me I had to learn about my problems. I've taken their advice many years later and have since learned about my diagnosis. You know what? My life reads like a story out of a textbook. It's so typical. You think these b*st*rds would have learned something in school and left me alone.

    I'll be happy to embrace my diagnosis because personally I don't have a problem with it. Others might be creeped out, but I'm not. I am what I am and I make no apologies. And I'll be happy to give a bird to the shrinks while I do it.

  10. How would I have known that person doesn't speak english? I would never suggest something like that.

  11. mindfreedomvirginia, how would you explain the fact that I'm healthier now than I have ever been while being compliant with medication?

    (I'm not schizophrenic, for the record)

  12. Jules: Whether somebody comments in his/her native language, or not, isn't the point here, IMHO. Rather, the point is whether it is justifiable to label this somebody on the basis of a comment they make on the internet.

    As for your question to mindfreedomvirginia: psychotropic drugs are mind altering drugs. They change a person's perception, also that of themselves. Drunk people often perceive themselves as excellent drivers... It's called "intoxication anosognosia".

    (Aren't you human?)

  13. Hi Marian! Like I told you before; when you're ready to have a discussion without attacking me, I'm all for it. Have a great day :)

  14. Jules: where do I attack you? - BTW, why attack others (see your comment from July 13, 6:22 AM) when you don't like to be attacked yourself?

  15. Your perspective is thought-provoking and, for me personally, timely. I was diagnosed in 2005 with Dissociative Identity Disorder and, due to an ensuing desperate craving for information and camaraderie, sought out an online support group for survivors of trauma. I found several people who also had DID and the support was truly valuable. However, I began to notice over time a tendency in myself and others to be our diagnoses. I began to lose sight of who I was independent of DID.

    Some of that has to do with the nature of DID itself, which I won't get into. Some of it has to do with the identity crisis that can often follow receiving a diagnosis laden with as much mythology as DID is. But some of it has to do with learning to incorporate a diagnosis - one that fits for the individual, I should say - into the whole of one's identity, rather than allowing the diagnosis to become one's identity.

    In short, I believe there is a difference between accepting a diagnosis and becoming one. But I believe your post addresses well the need to guard against the latter, regardless of what one chooses to do about the former.

  16. h.g. - What I actually didn't say in this post, and it's an oversight, is that in "schizophrenia" accepting your diagnosis goes hand in hand with taking your meds. It seems to me, and I may be wrong here, but NAMI makes a big fuss out of accepting one's diagnosis in order to be better compliant with the medication.

  17. I think, when it comes to psych diagnoses, it can be very, very difficult, if not impossible, to accept the diagnosis and, at the same time, not become the diagnosis. Psych diagnoses are made on the basis of, and describe/judge, behavior, thoughts, feelings, perceptions, etc., that is, the entire non-physical part of a person's being in the world. The moment, someone accepts a diagnosis of for instance DID, or "sz", or "bipolar", or or or, the possibility of a certain behavior, thought, feeling, perception, etc. to be an expression of the illness, and not of the self, cannot be ruled out any longer, and to the extent that a behavior, thought, feeling, perception, etc. is recognized as being caused by the illness, and being an expression of it, not of the self, this can only be done by identifying with the illness. While to the extent to which someone doesn't recognize their behavior, etc., as caused by the illness, but to be an expression of their self, they can be said to not accept the diagnosis either.

    I didn't put DID in quotation marks above, because DID, like PTSD, is a trauma-related diagnosis, and thus a little different from diagnoses like "sz" or "bipolar". Although who or what we are, our self, IMO isn't only constituted of our past experiences in this world either, it is still more so than that it is constituted of our brain chemistry, our biology. Diagnoses like DID and PTSD imply that a person is her past experiences. Diagnoses like "sz" or "bipolar" imply that she is her brain chemistry, her biology. And while it is possible to free yourself from being the victim of trauma, it is not possible to free yourself from being the victim of your own, chronically diseased, biology (and yes, that means that you have to take your "meds" for the rest of your life).

  18. P.S.: When I say "free", I don't mean make it undone, but rather grow from being the victim into being the master, the one who's in control. Now, in fact, you can get in control even of your biology to a much greater extent than most people, especially the "experts", think, and will let you know. The mind rules. To teach people coping strategies seems to be an expression of this, but it isn't really, because the coping strategies usually taught do not aim at becoming the master, but at becoming a good victim, the "good patient".

  19. Marian, you don't need me to tell you what you've already posted.

  20. Jules: As far as I can see, all I do is voice some concern about internet-based labelling, state a scientific fact about the effect of psychotropic drugs on the perception of the person who's under their influence, and, well, ask you, whether you are a human being - since so-called "psychosis"/"sz" basically is defined as being out of touch with (consensus) reality, while all human beings are out of touch with (consensus) reality, every now and then. So, a statement like "I'm not schizophrenic," doesn't really make sense, unless it is made by someone/-thing, who's not a human being.

  21. Rossa Forbes - Ah yes, thank you. There is no medication for DID, although many of us address some of the symptoms with prescription drugs. I really hope my comment did not come off as in any way relating schizophrenia with DID. That is not my intention at all. I just wanted to comment on your astute observation that it can be easy to become one's diagnosis, no matter the diagnosis.

    Marian - As someone with DID, I can tell you that at least from where I sit, my diagnosis in no way implies that I am my past trauma. Nor is it true that it is impossible for me to get free, as you said, of my own " chronically diseased biology ...." My biology is not diseased. As you pointed out, DID is a trauma disorder. And the prognosis for DID is actually quite good. And though many of us with DID do use prescription medication to address some of the more disruptive symptoms of DID, there is no medication that "cures" or "fixes" it.

    Having said that, I will say that I didn't mean to muddy the waters by bringing DID into the mix. My point was simply to agree that, yes, with any diagnosis it's possible to lose some of your sense of self. But it's also possible not too.

  22. h.g. Thanks for your comments. I don't know anything DID, but I do believe all these mental health labels are trauma related, as Marian also points out quite frequently.

  23. Marian, that's odd, because the statement I made makes complete sense to me. A diagnosis of mental illness does not make one "unhuman" and no one is implying that, as much as you'd like to think so. Stop wasting my time with semantics, I'm done.

  24. I don't see the difference between DID and "sz" as profound as many people want it to be (although I do understand why people don't want to be taken for a "schizo" - see Jules' comment above; it's probably the most discriminatory label there is). "Mental illness", whatever kind of, is about repression respectively denial of trauma. That is, it is about splitting off, or separating from, a part of oneself, that then comes bouncing back = "symptoms". The difference between specific diagnoses is how exactly, and to which extent the splitting off is done. Dissociation often also plays a role in "sz". I didn't have a problem remembering and talking about certain things that had happened to me in my past, because it wasn't really me they'd happened to. It was more like I'd seen it happen in a movie, so I could easily distance myself emotionally. My whole life had been a movie, a pretty lousy B-picture in fact, not really real.

    No doubt, it is easier to not become the "illness", although you're accepting the diagnosis, when what the diagnosis says is "traumatized", and not "brain diseased". Trauma is something that happened to you in your past, and it can be overcome, let go of, in as far as it doesn't happen anymore. A chronic brain disease on the other hand, well, it happens to you all the time, everywhere. No way you can overcome it, let go of it. And since there is no clear reference to past life events, anything you do, think, feel etc. potentially is a "symptom", You potentially are a "symptom".

  25. Jules wrote: "A diagnosis of mental illness does not make one "unhuman" and no one is implying that,..."

    Hm, strange. I thought, I'd said that being "schizophrenic" equals to being human. IMO, at least. While I see people labelled as "schizophrenics" be treated by and large as if they were "unhuman". By those who received another label, or none at all ("I'm not schizophrenic" = "I'm not one of those existences"), as well as, and not least, by the "experts".

    "I'm not labelled with schizophrenia," would have made sense.

  26. I am recovering from schizophrenia, and I can tell you that you are 100% correct in your opinion you express in this article.

  27. Anonymous - thanks. I hope you enjoy my blog and thanks for joining the network!


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