Practicing my dropkick skills: OCD

[rhivolution]

Please note: The below post is my personal opinion and should not be taken as medical advice to anyone else, nor is it meant to negate or trivialise other conditions.

So I saw the book Saving Sammy at the public library, and after picking it up and skimming the inside cover, I sort of couldn't bear to read it, mostly because the subtitle is 'Curing the Boy Who Caught OCD'.

Caught. OCD. Cure.

Now, for those of you not aware, a few years back, the US National Institute of Health concluded that in some children with sudden onset OCD and/or Tourette syndrome (henceforth TS), the conditions appeared after the children had had a strep infection, and that this could possibly be causal. Your bog standard OCD and TS are, apparently, slow onset in pre-pubertal cases, and these cases came on rapidly, like a switch was thrown. This proposed condition is called PANDAS, an acronym for something I'm too spoon-less to write out here involving strep and pediatrics and psychiatric disorders and stuff.

Now, I'm not judging whether or not PANDAS is a valid diagnosis; studies to date are inconclusive. This frustrates parents to no end, as the author of the book notes in her FAQ: Many doctors don’t believe that PANDAS exists; my son’s experience demonstrates that it does. I should not have to point out the faulty logic there, nor why doctors could be skeptical.

Her cause, I should note, has been taken up by the folks at Age of Autism, who are generally accepted in the disability community as fuckheads.

Now, I'm not a scientist, and maybe there's causation instead of correlation. If so, I would hope like hell that PANDAS gets shifted to become a separate condition from OCD or TS or any other psychiatric condition. My OCD was rapid onset, at just about the pubertal cut-off age for pediatric diagnosis in this situation. Needless to say, my concern is a sudden sharp fear that there'll be hundreds or thousands of parents dragging kids for testing, for research, for a cure that'll never come. (Nearly every US kid gets a strep infection at some point.) Real pain and concerns will be ignored by the thought that brains can be easily sorted by treating a physical condition, without consideration for lasting effects nor ongoing issues.

Really, that's my deal, Beth Maloney. I'm glad your son is better (and heh, you had the privilege to get him to loads of doctors until you found one who'd listen to you). Just don't fucking tell me you've cured OCD when there's no cure for the vast, vast majority of us, including some of us who were kids your son's age when first diagnosed.

Don't even IMPLY it.

Except you already did, with your book and your diagnostic kit that you sell and your speaking appearances. How many kids have you fucked over?

(Someone please tell me I'm not wrong to be reacting this way.)

Comments

[mercredigirl]

You're not wrong. I agree with you completely. I don't like to think of conditions as something to be cured or fixed as though they are inherently wrong. Yes, they do create daily problems that the statistical-normal don't have to deal with. But if I'm going to address that, I'll do so on my own terms, and not the pseudomedical psychobabbling behest of some pop-pseudoscience lady.

[rhivolution]

You get at something that I'd meant to say as well...my gut reaction was fuck you and your cure, when I first saw the book.

That, and while I'm not a neuroscientist, I don't think sorting this kid's brain chemistry by antibiotic alone would be enough to end his OCD symptoms. I've found that a lot of behaviour becomes so entrenched that it's hard to eradicate. Maybe they go into therapy or something in the book, but...I don't know.

And then we get into the whole 'does having OCD mean you're not neurotypical' issue, thanks to the author linking PANDAS somehow to autism...I do not even know.

[djkittycat]

Cured? More like managed. That's the way I experience my chronic stuff (well, right now one of the things isn't being managed to my satisfaction, but that's the term I use anyhow.

Fuck that woman. She's like a hair away from the anti-vaccine shitheads.

[mercredigirl]

Yes! Managed! That is the word for which I was looking. It's not something that goes away. It just changes its manifestations over time. Just because I counted my footsteps much more when I was younger than I do now, or freaked out more over walking into a room while wearing shoes, doesn't mean that the me of today is 'cured' compared to the me of my childhood. *deathglare at speaker-lady*

[djkittycat]

At worst it's kind of like going into battle. At best you know what triggers you, you know what things to avoid doing (like problematic foods, for example, or scents), you know what pain you have to accept not going away and what pain can respond to massage or therapy, you know your own quirks and can manage them so that they have minimal negative effect on your daily functioning, you know your limitations, and you just deal with it and try to keep positive. When you aren't positive, you sit with that and go easy on yourself.

That's why I call it management.

[mercredigirl]

you know your own quirks and can manage them so that they have minimal negative effect on your daily functioning, you know your limitations, and you just deal with it and try to keep positive

ikr that's not cured that's dealing with. and it annoys me that this woman is assume that just because someone's learnt how to handle themselves (to pass for normal, if you will), ta-da they're cured, normal, fixed.

[rhivolution]

That's the thing--apparently PANDAS is a 'curable' condition, which I don't really follow. You can sort out brain chemistry somewhat, but that's not all that OCD is.

[mercredigirl]

Oh ugh.

TW for ableism in what I'mma recount.

I have a classmate once who kept insisting that people with clinical depression can 'choose to be happy', and I told him he was a fuckwit, and a couple classmates who actually have experiences with depression/have relatives with depression told him so, and he was like 'You can choose to take meds and make the effort, or you can choose not to' and FLAMING RAGE OF FLAMINESS. As the Chinese idiom goes: 火怒三丈 (angry flames from three orifices~)!

[rhivolution]

Ugh. Ughughugh. While I find that, with OCD, you do have to motivate yourself to change thought patterns, this is not something that is done by force of will. It takes time and assistance (chemical, theraputic, research, support). To assert otherwise is ignorant of the basics of brain chemistry.

That idiom is brilliant! I wish there was something as visually evocative in English.

[notemily.livejournal.com]

(coming late to this thread via a link from FWD (http://disabledfeminists.com/))

Yeah, I had a "friend" once who told me my ADHD was imaginary and I was just lazy and needed to work harder. And then he didn't understand why I got so angry.

[littlebutfierce]

Ugh, that book & her kit & speaking appearances sound really problematic. :/

[rhivolution]

Very. I wanted to throw the book. But I used to work in that library, and I know better than that. (Do not disturb the patrons.)

[jaythenerdkid]

You're absolutely right to react like this. I'm kind of seized with the desire to find this woman and smack her over the head with a gigantic book entitled "ACTUAL MEDICAL LEARNINGS".

[rhivolution]

And this is when I regret not having my 'It Are Fact: I Know Because Of My Learnings' Dr John Smith icon over at Dreamwidth.

[jaythenerdkid]

I want to do one of me in my stethoscope and lab coat with that same caption for arguments about medicine/science/mental health.

[ex_troublesteady667]

You're not wrong to react like this. I am raging at the sheer premise of this book (the individual conditions that resulted in her son's sudden onset OCD and how she/they managed the disorder itself shouldn't be presented as a handbook for every parent with an OC child, because not all situations are the same and she is not a specialist) to the ideas inherent in its title: that a chronic illness can be cured, despite the fact that 'chronic' means it bloody can't, to the "caught OCD" part, because disorders are not the goddamn flu!

And, sadly, I am reminded that the ignorant, hurtful attitudes reminiscent of Robin Hobb's latest fail? May actually be the prevailing attitudes.

[rhivolution]

I will admit that I may be getting the premise of the book itself wrong, but the title is highly misleading, as is the inside jacket. And her connections to some seriously twisted parents' orgs for autism really makes me twitch.

In my opinion, and this could be dangerous ground, the Hobbfail is pretty symptomatic of an ongoing refusal to consider the experiences of the person with a mental health condition. This is particularly definitive when that person is a child. Despite the talk of patient-centered medical care, and the shifts that have admittedly been made in some areas of mental health (though it's still often very fucked up), parental advocacy runs unchecked.

Thank fuck that I had/have a thoughtful team over the years, and that my mother took my experiences into consideration. I'm fortunate and privileged.

[revena]

Oh wow. You are very not wrong to be reacting this way. D:

[kaz]

via FWD -

You're not wrong, and I sympathise so much. I'm autistic and I could just throw *all* the people who preach about autism ~cures~ (Age of Autism represent!) through a wall. (Well, I could if I were stronger, but OTOH rage lends strength...) I'll add this woman to the count! So, YEAH.

Also the parent saying ze's cured zir child, because I always think "what if the child isn't cured, what if they've just learned how to fake NT?" (highly possible with autistic kids, don't know how this works for OCD) and just, augh, the "parent writing about zir non-NT child and how ze managed to cure the awful non-NTness" has SO MANY THINGS WRONG WITH IT I don't even.

[notemily.livejournal.com]

And how do you think that kid will feel if ze IS faking NT or non-OCD, and ze's parents go around saying "Ze is cured!!!" and talking about how OCD/non-NT is SO AWFUL, and the kid internalizes that?

[rhivolution]

That's my real, real fear with this. I mean, I can fake NT/non-OCD really really well, most of the time. I could even fake it as a teenager.

[notemily.livejournal.com]

P.S. I just noticed you're from Wauwatosa. Hi, neighbor!