Saturday, September 20, 2008

What's In A Name?

My favorite commenter, Anonymous, asks:
Once a person is diagnosed as, say Bipolar II, do they keep that designation for the rest of their lives?

Oh, gosh, I think we all wished we knew more about the exact course these illnesses would take and that we could tell each individual what to expect. We don't. I like the part of the question that asks if one keeps a diagnosis for life.

It left me thinking about what a diagnosis actually is. I know what a piece of chocolate cake is, and I could give a pretty good guess as to the fate of that cake if it's put near me. I know what a diamond is and that it is likely to last for a very long time.

Unlike a piece of chocolate cake or a diamond ring, a diagnosis is a hypothetical construct. It isn't a real thing, it isn't tangible, and the only meaning it has is the meaning we give it. Diagnosis isn't even an illness, which is slightly more concrete for certain diseases (say broken bones or the presence of a tumor) because one can have an illness without ever having a diagnosis simply by avoiding contact with physicians. While mostly we agree that certain symptoms (for example, having hallucinations or delusions) are likely the cause of a yet-to-be-fully-elucidated pathological process, some diagnoses are a matter of spectrum-- the somewhat random designation of when sadness or grief is "depression," when personality is disordered, or the precise reading at which we deem blood pressure to be "hypertensive."

The meaning of diagnosis is left to each person. Some people advertise their diagnoses, others live in fear of stigma. Sometimes, diagnosis is used to protect a member of society from suffering from the consequences of their behavior ("not criminally responsible") or to justify financial support from the government ("disabled"). In the negative, diagnosis alone seems to be held in the greatest regard by insurance companies. The implications for a diagnosis of AIDS are profound when one wants insurance. The same person, undiagnosed and
undesignated, might find it easier to get insurance. There's a blood test for AIDS, there isn't one for Schizophrenia.

We talk about "carrying a diagnosis." Whatever that means. I think, if one suffered from episodes of an illness many years ago, and one has remained symptom-free for a long time with no treatment, the issue of designation (-- for purposes of a medical history, or perhaps for government security clearance when applying for the Vice-Presidency in any party)... is best left to an honest recount of history. If it were cancer, one might say they were diagnosed with cancer 20 years ago, treated for a period of time, and have been disease-free since.... I'm not sure
psychiatric illnesses are any different.


Anonymous said...

Woo-hoo! I made the blog! I made the blog! I feel like the teacher's pet. ;)

Thanks for that interesting explanation, Dinah. I guess I got diagnosis mixed up with disease, but you ended up answering my question (and then some), anyway. I really appreciate it.

Incidentally, I'm not the same anonymous who posts all the "stupid" comments. (Right.)

Zoe Brain said...

Gender Identity Disorder is a bit of a problem too.

Consider a baby boy, born with mild hypogonadism. A decision is made by his medical team - usually involving the parents, but not always - that his appearance doesn't fall within acceptable norms for that society.

So they castrate him, and remove most sensory tissue, forming an approximation to female genitalia.

Later on, as happens in about a third of cases, the child insists that he's a boy, not a girl.

He is then diagnosed as being Mentally ill, with GID (302.85) or GIDNOS (302.6), depending on the availability of medical records and whether he is is diagnosed in childhood or adolescence.

Various Intersex organisations are not particularly happy with this state of affairs.

Those 46xy chromosomed people with the 5ARD or 17BHDD Intersex conditions pose particular problems from a psychiatric standpoint: they are born looking female, but masculinise at puberty.

If their gender identity is strongly male, they will usually be diagnosed as having GID(NOS) 302.6 in childhood, but they the symptoms dissappear as their bodies change, and some are even able to father children. However, as their Birth Assignment is female, they may still "carry the diagnosis".

About a third though have a strong female identity, and suffer very significant distress and suicidal ideation when their bodies change.

This minority may reasonably be given a GID(NOS) diagnosis based on their chromosomes at the time of their change. But this does not always happen, as again, their sex assignment at birth was female, and they are happy with that.

If one looks at the diagnostic criteria for GID in childhood, it just doesn't seem to fit in with the whole concept of mental illness as currently understood. It is almost entirely culturally dependant.

Consider a child - assumed not intersexed in any way, a little girl - who meets the following diagnostic criteria:

Insistence on wearing stereotypically masculine clothing.
Plays at being an astronaut or policeman, or a prince slaying a dragon.
Likes playing baseball.
Prefers playing with boys.

That's enough for the required 4 out of 5 diagnostic symptoms.

She has a marked aversion to feminine clothing (it gets in the way when she climbs trees). So that's another criterion met.

She's not intersexed, as an initial assumption.

And she's treated as a pariah by her very conservative parents and school, who insist that a woman's place is in the home: Kuche, Kinder, Kirche. There is significant social impairment.

That's enough, currently, for her to be diagnosed as suffering a mental disorder. Had she been in a less traditional society, there would be no social impairment, so she would not be deemed mentally ill.

WHAT THE.....???????

Now having been given a diagnosis of GID(NOS) myself - it would be GID but I'm hormonally odd - I am chronically and intractably mentally ill. In some jurisdictions, I would be deemed mentally incompetent to act as a witness. In others, as my "illness" is in the Sex and Gender Disorders part of the DSM-IV-TR, I would upon formal diagnosis be put on a register of sexual deviants and offenders.

I have been, by the way. Anyone whose birth assignment was male and is prescribed the drug Cyproterone Acetate other than for prostate cancer treatment is put on the list of "sexually deviant males" in my country, even if subsequent tests show they're actually female, as happened to me.

Diagnoses have conseqences.

So I may not be the most reliable of judges. But in my opinion, this whole thing is a mess, anti-scientific, irrational, and not just crazy, but inhuman.

In short, the Lunatics have taken over the asylum.

Anonymous said...

Dinah, you said:

"We talk about "carrying a diagnosis." Whatever that means. I think, if one suffered from episodes of an illness many years ago, and one has remained symptom-free for a long time with no treatment, the issue of designation (-- for purposes of a medical history, or perhaps for government security clearance when applying for the Vice-Presidency in any party)... is best left to an honest recount of history. If it were cancer, one might say they were diagnosed with cancer 20 years ago, treated for a period of time, and have been disease-free since.... I'm not sure psychiatric illnesses are any different. "

Unfortunately, that doesn't work when applying for insurance. Even though I mentioned I was tapering off of psych meds and no longer depressed, that was used to deny me coverage.

Blame the insurance companies, you say? Well, that isn't very helpful to someone like me who is screwed until I find a full time job with benefits.


Anonymous said...

I love the first few lines of the fourth paragraph. Much of what we talk about as real is made up construct. Useful for some purposes perhaps but not nearly as much as we lead ourselves to believe. The very weight of the DSM can trick the mind into believing that what is held within is all real. Much to be said about the social construction of illness and of reality altogether but most of it has already been said by writers much better than I. (am understood)

Anonymous said...

I don't understand why, with "GID," the child isn't left intact and allowed to decide for him or herself what the appropriate gender should be? If surgery needs to be done, can't it occur after puberty, or whenever the child has indicated a distinct identity? (scare quotes for Zoe, because I get what you're saying about it being a false and unfair construct in many cases.)

We know someone who is an anatomical male, who apparently identified as male, fathered two children, then decided (at some point) he was actually female and began sex reassignment therapy -- which evidently consisted of psychotherapy, hormones, and living and dressing as a female. A few years later, he decided he wasn't female after all, quit taking the hormones, and resumed life as a male. I can see something like that being classified as Gender Identity Disorder, since the guy was genuinely confused.

But for someone to be diagnosed as mentally disordered and sexually deviant on the basis of chromosomal or hormonal variation is just plain wrong. It's unfortunate that society doesn't allow for individual differences without considering them pathological. :(

Novalis said...

As I continue to shake my head at Furious Seasons and other anti-psychiatry sites, it seems worth pointing out that the phenomenon of diagnosis did not originate with medicine or psychiatry.

For all of recorded history societies have had labels for those with anomalous behavior and experiences: the two most common have been "crazy" and "criminal" (and synonyms). Whenever three or more people are in one place, social labelling of some kind, implicit or explicit, is going to happen--it's just human nature.

The project of psychiatry is to refine these two basic labels ("mad" and "bad") into labels that are more humane and constructive and that reduce net suffering. That doesn't make psychiatrists saints (far from it), and maybe psychiatry has failed at the project, but to give it up as misguided is not to return us to some Eden free of stigmatizing categories.

Anonymous said...

philosophirn ist delphlegmatisiren, vivificiren.

Novalis said...

Ja, genau.

Anonymous said...

Sprechen sie English!

Unknown said...

From the title of the post, I thought you would address what doctors and their patients call one another.

That would make a good post too, I think.

Anonymous said...

My psychiatrist has threatened to call me "Cat Lady" if I don't reduce the feline census around here. :)

Midwife with a Knife said...

Zoe Brain: You may feel relieved to know that the approach to these intersexed disorders is much different these days. (Hm... maybe I should blog about this, I heard something on NPR and meant to, but...). We no longer treat hypogonadism (or any form of non-standard appearing genetalia) with arbitrary gender reassignment. Or at least where I did my ob-gyn training, we were taught that that was inappropriate. And in fact, we're taught to wait until after puberty (or longer, until the patient can take part in the decision), for any genital surgery, and any surgery that's performed is performed at the request of the patient (not just the parents). Also, the goal is not to assign or reassign the patient's sex (biology has already determined that) or gender, but to provide the patient with genetalia that the patient feels comfortable with.

So, for example, a woman with 17 B hydroxylase deficiency may have completely female parts, but may also have vaginal agenesis or a thick transverse vaginal septum. Because this woman has a uterus and eventually menstruates, she needs some way for the menstrual blood to exit (otherwise it can become quite painful). So, we can create a vagina for her, both to allow menstruation and intercourse if she desires (although at least initially, the vagina requires maintenance by the patient to prevent stenosis and closure, so this is best done when the patient is either sexually active or at least willing to use dilators to keep the vagina open). We no longer do clitoridectomies or other similar genital "revisions" for these patients, like they used to do when these people were children.

We've come to appreciate that sex and gender are very complex biological and social constructs, and that while surgery is an appealingly simple solution to an extremely complex problem, it doesn't really solve the problems at all, and in fact may create more problems. In modern pediatric gynecology, the idea is to wait until the intersexed disorder in question causes a real problem (like menstruation without an adequate vagina) and then fix that specific problem, and otherwise try to make the patient comfortable with the body he/she has; because even when there's an obvious congenital problem (like congenital adrenal hyperplasia), you can easily do more harm than good with gender reassignment surgery.

In terms of gender identity disorder, that's a tougher nut to crack. It's probably a developmental (maybe relating to brain development in the fetus) issue, and it causes a ton of suffering for people when their brain's sex doesn't match their body's sex. Society doesn't help, because as a society, we don't really give people the permission they need to express their sexuality in any way they want/need/can find a willing adult partner to help them express. In terms of surgery for GID, the benefits aren't terribly clear. People who have surgery for GID are often glad that they did, but still commit suicide at the same rate as people who don't have surgery. Some studies show that people who have gender reassignment surgery for GID may be happier, some studies don't show an improvement in these people's lives. But when people don't have an improvement, is it because they have internalized their socieiy's (or families) disapproval, and just generally feel terrible about themselves no matter what we do? The often poor treatment of these individuals by society at large is a huge confounder. Also, no matter how talented the surgeon, he/she can never make genitalia that function as well as the patient was born with (i.e. a "created" vagina and clitoris will never be as responsive as the penis a patient with GID was born with), and the surgery can never be undone. So while some people with GID may benefit from surgery, a more efficient (and compassionate) and therapeutic approach might be for our society to make room for people with GID to express their sexuality in ways that are comfortable (and make sense) to them. Whether or not their sexuality involves gender reassignment surgery (which I'm sceptical about for the reasons noted above).

And maybe there's a role for psychiatry or neurology or psychology for figuring out where in the brain things aren't right, and trying to help fix that, as much as possible.

Zoe Brain said...

midwife with a knife - thanks so much for your reply.

Is there a standard of care available for IS infants?

The reason I ask is because the situation here in Australia is quite different. We're trying to collect statistics on genital surgery on newborns, but it's difficult to get the data.

Even more difficult is to differentiate necessary and reasonable reconstruction from what can only be called mutilation.

The last data we had from the now defunct ISNA is over a year old, but indicated castration of potentially fertile males with micropenis still happened in the US about 500 times a year. Even that's not reliable, as some cases of hypogonadism involving testicular malformation were mixed in.

Although I'd take issue with some of your data on GID - it appears to be based on a 30-year study in 1991, and fresher data indicates a rather less sanguine view, may I commend you on your essential humanity.

I regret to say that it's all too rare. I speak from personal experience, as although I'm technically IS, TS is close enough. I transitioned. A long story, and I'd appreciate it if you could contact me via e-mail on this and other issues.

We're trying to pursuade the Australian Human Rights commissioner that the current recommendations of the Australian Medical Association, that intersexed newborns should always get immediate surgery as a "medical emergency", is suboptimal.

A contribution elucidating US "best practice" would be most helpful.

moodypenguin said...

Diagnosis is an easy thing to trip over, isn't it?

I sit on both sides of the fence- I am a health professional (I make diagnoses!), and I have Bipolar disorder (therefore also have recieved a diagnosis).

I expect to "carry" my diagnosis through life. Not because I know something you don't know about Bipolar disorder, but because it's now written in my history- and I think it will always be something to "watch" for.

I've been diagnosed with it- so what? The big question for me now is what we do about the symptoms/features that lead to that label...
(I recall one of my lecturers saying "treat what you SEE" repeatedly- perhaps this is what she meant!).