Dear Ms. Lindholm: your ignorance is showing, and you need to shut up now.

[kaigou]

I should've said this before: this is LONG, and when I say something is LONG, you can expect it to be about six times as long as the longest long you've seen. I know I go on, but the length here is in direct proportion to the height of my temper. Just so you're warned.

RE: This Is Your Brain On Drugs . . .

NOTE: consider the above link as having a trigger-warning if you have a disability, know someone who does, or are sensitive to sudden spikes in blood pressure when in the vicinity of someone with a big megaphone busy talking out of her ass.

Ms. Lindholm's blog topic on May 20th of this year puts her in the Tom Cruise Denouncing Postpartum Depression category: someone rattling on quite definitively with little to no comprehension of the facts, in a way that essentially amounts to what you are experiencing is not only all in your head, it's a personal problem and shame on you for thinking you should, or even deserve, to seek a resolution.

First, to make this perfectly clear, the issue at hand is ADD (Attention Deficit Disorder) and its counterpart, ADHD (Attention Deficit Hyperactivity Disorder). The two are cousin-conditions that we could generally define as "a state of excessive mental activity, sometimes accompanied by excessive physical activity (the hyperactivity element)".

ADD and ADHD are not mental "illnesses". ADD and ADHD are disabilities.

More precisely, they are cognitive disabilities, along with other cognitive disabilities such as dyslexia, dyscalculia, dysgraphia, and dyspraxia. ADD/ADHD shade into the class of physical -- because 'chemical' in the brain is still, fundamentally, a physical attribute -- disabilities, while the cognitive side is what impairs or affects thought processes like learning new skills, accessing short-term memory or transferring new information into long-term memory, capturing and comprehending incoming information, and so on.

So, to repeat: ADD/ADHD is not an 'illness'[1]. It is not something that you catch; it is not something you can cure. It is, like so many other disabilities (including learning disabilities), something you live with. You find a way to get through, and if you're really lucky, you find things that will help you deal with the disability, and the stress it causes in your life each time you ask someone around you to put up with, help cope with, or even just feel compassion for, the result of having that disability.

But because this is an alien concept for you, Ms Lindholm, let me make it perfectly clear for you, as well as any readers following along at home. Allow me to begin with a concrete representation of the situation at hand.



I'm sorry, Ms Lindholm, but by your standards, those glasses really must go.

Your eyes are disabled -- through no fault of your own, certainly! -- but you simply can't imagine it's acceptable to attempt to compensate in any way for this. You should learn to live with your disability, embrace it, even! Think of all the creativity you're refusing to allow yourself to express every time you avoid walking into walls, or keep from tripping over obstacles at your feet, or even recognize a friend at a distance.

Really. As you so wisely put it: "Do you [wear glasses] all through college? Do you [wear glasses] during your career years, when you are training on that new software, or reading up on a new client? Where does it stop? Do you ever get to be your [semi-blind unseeing] self again? Or must you forever be slightly modified to suceed [sic]?"

Let's consider what your life would be like, without those glasses.

You can't drive, for starters. You'll need to have friends drive you, or you can take the bus when running errands. Of course, if you do take the bus, you'll be waiting anxiously as each one pulls up, squinting at the signage, and halting the boarding procession each time because you have to confirm what you can see but -- and this is very important -- that you can't be certain you see. Is the correct bus, or is that Q actually a G?

If the wrong bus, you'll have to back up, annoying the line of everyone who'd known already what bus it is. You will apologize: to the driver, to the people in line who move, to the people who won't move, to the people who mutter at you for holding everything up. And if you aren't already ashamed of yourself for imposing on them with your inability to see clearly, their attitudes will make it clear that you should be.

So let's say it's the right bus. Even then, you'll have to slow down and confirm you've got the right bus-pass (and not your library card), the correct bills (since American money isn't sized by currency), and the entire time, you'll be aware of the bristling of passengers stuck waiting behind you, because obviously you're not blind -- no cane, no dark glasses, no dog -- thus, to them, you must be stupid. That's why you'll try to be last in line, so as not to hold them all up; otherwise you risk one of those irate passengers shoving past you to put their money in. And since you can't see all that well, an at-a-glance doesn't work for you. What do you grab to keep from falling? Air? Now you're not only stupid, you're clumsy, too.

Once you do manage to get on the bus, now you have another issue to deal with: knowing when your stop is coming. Everything outside the windows is a blur, and if the building signs are big enough, you might get a fuzzy impression of blue in a round shape, or red in a square shape. You will probably spend a lot of time either calling for your stop too soon, calling for it too late, and apologizing profusely to everyone you've inconvenienced because you couldn't see far enough ahead to react in time.

You'll be spending a lot of time apologizing, period.

You'll have to explain to friends, repeatedly, that you didn't not wave because you honestly didn't see them, even when they were five feet away. Like driving in heavy fog, you'll be navigating the world at a slow pace, unable to foresee and avoid obstacles like curbs, steps, and parking meters if you're going too fast. You can't catch a baseball, kick a soccer ball, or even catch car keys tossed your way. These things require eye-hand coordination, and you can't coordinate what you can't see.

But other people won't realize that. They'll see you don't register what's around you until you're right on top of it, that you're clumsy and uncoordinated, that you stare for a long time before reacting. Yes, you're attempting to cope for your lack of distance-vision, hoping to trick your eyes into giving you details that the rest of the world takes for granted. That doesn't matter to them. They've already decided you're stupid.

Meanwhile, despite your best attempts otherwise, you'll probably end up continually apologizing for other people's reactions to you. The alternate -- expecting them to recognize, or even respect, that you have a disability -- is untenable, or impossible, or unforgivable. At least, that is, so long as you're convinced that a disability should not be addressed, but is a personal problem, and that the only acceptable option is to live with it, to embrace it, even.

So, no glasses. No contacts, either! That's putting something in your eyes. If glasses are a band-aid over the disability, contacts are even more obtrusive, and don't even consider Lasik surgery. That's practically cutting open -- no, wait, that is cutting open -- your body in order to fix a disability that, after all, is just your personal problem. By your own measure, Ms Lindholm, if you were truly a worthwhile and creative soul, you'd embrace living life as a fuzzy blur.

For shame, to see the eye doctor annually, to demand to wear glasses. That's not a disability, that's simply the way you're made! Oh, it's true the way you're made means your life is going to have a lot more hardship than the average person, what with constant stress, tension, and difficulties as you try in vain to cope with the disability or its after-image negative impact: on your ability to hold down a job, your ability to sustain long-term relationships, your ability to make it through a single day with any dignity.

It's much better to accept this as your lot in life and to find a silver lining, isn't it? Even if you bloody well can't see any linings farther than three inches from your nose.

---

If it's not bad enough that you must take a personal decision -- to live with one perceived condition -- and make it universal, it's made worse by your ignorance on conflating this condition with another. You just pile more on top when you also reveal your ignorance of what that other condition really is, how it operates, what solutions exist, how those solutions work.

For instance, your gossipy repetition of the drawbacks of Ritalin. Oh, how I've heard this before. It's like the Anti-Vaccine Idiocy of Learning Disabilities. You repeat it, I've heard it, and almost always from a well-meaning soul (like you, Ms Lindholm) wishing to just, y'know, "enlighten me" as to the "truth" (scare quotes intentional) of that possible medication.

I dislike repeating such, but just so there's no doubt how flat wrong you are, Ms Lindholm, I quote you:

Over the years, I’ve heard several funny* stories about Ritalin and its effects. One young friend told about being in charge of a younger sibling’s bath. He got the tub running and kid undressed and went for a towel. But as he passed through the living room, a Discovery channel program caught his eye. ...there he stood, captured by it, even though he knew that the water was now overflowing and the younger sib was yelling for him to come fix it. He literally could not tear himself away. Pure focus.

That, there, is not Ritalin when it's working. That's Ritalin when it's failing.

*Also: that kind of story is 'funny' in the same way that stories about a blind person walking into walls is quote-unquote funny -- ya gotta be sighted to think there's humor in what is really a very frustrating and humiliating experience.

That 'pure focus' behavior is a facet of ADD/ADHD, and it's one those of us who deal it with learn to use as a power for good (if we can). It also baffles many around us, when it's not frustrating them in turn. It's also a lot easier to explain using images, rather than words.



Whatever you're doing -- reading this post, talking on the phone, washing the dog, doing your bills -- gets the majority of your attention. But it's not all of your attention; you're aware that you have to leave for an appointment in fifteen minutes, that on your way home you need to pick up cat food, that your partner's birthday is next week. Those secondary tasks don't intrude on your ability to read, or talk, or wash, or pay bills; they exist alongside. Your attention is mostly focused, with minimal diffusion -- and that secondary diffusion, for the most part, you can choose to filter out, and having done so, you do not forget it's there; you can choose to have it filter back in again.

It is true that the first two letters of ADD/ADHD are 'attention deficit', but this is an inaccurate term that really needs to be retired already. A better version of the same is to call it 'Attention Diffusion'.

ADD/ADHD is not a state in which one cannot focus, or an diagnosis that means one lacks the ability to 'pay attention'. It took researchers well into the 90s before they realized that ADD/ADHD people are in fact perfectly capable of paying attention; the key is that ADD/ADHD attention is spread out amongst a range of stimuli that's anywhere from nine to ninety times the stimuli usually in play in an unaffected brain.

That is, the usual person may be aware of ten things jostling for center stage, and actively relegates nine things to the sidelines to pay the lion's share of attention (but not all) to center stage. For someone with ADD/ADHD, center stage -- and the sidelines -- are filled not with nine items but nine hundred, all demanding attention at precisely the same volume. There is no jostling or juggling or moving attention-foci about. The ADD/ADHD brain doesn't have that ability, and therein lies the dis-ability. Maintaining the focus on one thing or another -- and disregarding or suppressing or reducing attention paid to that which is secondary -- is beyond one's control.

ADD/ADHD is, to simplify utterly, the inability to willfully and selectively focus concentration.



It's often repeated that people with ADD/ADHD are statistically smarter than the average population. From what I've seen, I'm inclined to disagree. If the average, unaffected brain can juggle three things, without pause or hesitation, for an hour, the ADD/ADHD brain can juggle thirty things for five minutes before losing hold. Unfortunately, when the study only last two minutes... certainly the ADD/ADHD brain looks like a positive Einstein. It's only in the long-term that you see the insidious effects of this disability.

If we have solid and educated support from family, friends, and coworkers, and if we're lucky enough to have a boss aware of ADD/ADHD (or intuitive enough to catch on and react, even unknowing) -- and we're lucky enough to be in an industry that rewards ADD/ADHD attention-diffusion styles -- then we just might come out okay, or at least a lot less worse off than we could've. Unfortunately, most of the time, we're not going to be that lucky.

ADD/ADHD brains, when given a good opportunity to flex in the right ways, are phenomenal at juggling massive streams of incoming information that bowl over the average, unaffected brain. To the ADD/ADHD person, the overwhelming incoming information isn't much more than what we deal with, every day, when unmedicated. That also makes ADD/ADHD folks, with a bit of self-training, almost unparalled at being able to compile, analyze, and synthesize seemingly random and contradictory pieces of information, plucked from a streaming chaotic mass that to anyone else is, well, just a streaming chaotic mass. We already spend every minute, basically, working to single out disparate discreet items from among the ninety jostling for attention on center stage.

Putting us in a situation, like certain types of multi-informational, high-stress, fast-deadline jobs, where we can use those innate coping mechanisms and processing styles to our advantage is, to the ADD/ADHD brain, a chance to use the fact of our disability to achieve some pretty amazing (if, to us, rather mundane) results. The irony must be noted, however: when you do have a brain that can run on eighty cylinders at once, the mere fact of this being so different from unaffected-brain learning processing means that the ADD/ADHD person often down-plays, or just stays somewhat insecure about, those ADD/ADHD-caused skills.

Others will want to know how, or why, the ADD/ADHD brain can "do that", or they'll wonder why the ADD/ADHD person is so good at the multi-information streams but can never remember a meeting on time. These are simple things, coworkers (and family, and friends, and lovers) will say: how can you not manage this? The thing is, those are not simple things, to the ADD/ADHD brain; those require directed/concentrated attention with the remainder of stimuli suppressed or temporarily disregarded. For the ADD/ADHD brain, that so-called 'simple' thing is the most difficult, if not outright impossible.

So what most ADD/ADHD brains learn to do, very early on, is exactly what that kid was doing watching the Discovery Channel while the bathtub filled. I say "early on" but it's more precisely that it's learned automatically -- it's the flipside of the second circle-image, really -- and becomes more of an active tool as one enters adulthood (if you're not lucky enough to have childhood-ADD/ADHD that resolves itself in the onset of puberty).



That single sliver of yellow is not really just one thing -- the bathtub filling -- it's everything else that was in the second circle-image, squeezed into an incredibly compressed state. And, like a blackhole, when it reaches a point of ultimate compression, it will inevitably spring back, shattering the hyperfocus and sending everything into chaos on center stage while all the disparate stimuli run around at top speed. Until then, though, the hyperfocus can be almost complete, and in some cases truly complete, to where the filling bathtub no longer even exists.

And that's not something the unaffected brain can do, either. For the non-ADD/ADHD brain, there is always a chunk of long-term memory, a kind of mental operating cost, that quietly but continuously maintains all the other stimuli, bringing forth what's needed as needed, and settling down those that might jostle in the background. You could say the unaffected brain has a capable stage manager, while the ADD/ADHD brain does not. To give decent focus to one player on the stage, the ADD/ADHD brain can't get the others to pipe down, so instead it banishes them completely from the theater. Until they bust the door down to get back in, they are truly out of sight, out of mind.

That is the ADD/ADHD brain, when unmedicated.

Ritalin, when it works, makes the brain look and feel and operate just like an unaffected brain.

Here, I must also add: Ritalin is a medication. I take huge exception to the fact that Ms Lindholm, following in the fine tradition of ignorant fools everywhere, prefaces her anti-disability-medication position by starting off talking about how she's never done illegal drugs, or at least never inhaled. Perhaps the readers at home will see it for the manipulative false-analogy it is, to rephrase it this way: I've never done crack cocaine ... so I wouldn't take insulin for diabetes, either.

---

On top of all else, Ms Lindholm, you say: "You have to be who you genetically are."

I'm sure Mr Hines, and all other diabetics I know, would be happy to be genetically who they are -- except then they'd also be dead. [2]

I'm sure people with hypertrophic cardiomyopathy would love to be genetically who they are, and be able to live without a daily dose of Verapamil (among other things). But then, they'd be dead, and my father along with them.

It may be true genetically that I have a pretty good chance of getting two decades more on this planet, maybe two and a half if I'm lucky and very careful. I have twelve great-uncles and great-aunts and two grandparents (on both sides of the family), five uncles, and three aunts who have all died of massive heart failure between their fifty-eighth and sixty-fourth birthdays.

Genetically, that means my life is more than half over.

Genetically, that's who I am.

Genetically, I fucking refuse to accept that this is all I fucking get, and I sure as hell refuse to let some ignorant fool with a megaphone shame me into ever believing otherwise.

I am not solely the sum of my genetic parts. I am not going to live my life blindly stumbling into walls. I am not going gently into that self-delusion that I'm a better person by refusing any possible treatments.

I have a disability. A treatment exists. I have the right to use that treatment. And above all, I have the right to live without being shamed or ostracized for my disability -- or my wish to treat it -- by people like you, Ms Lindholm.

[ continued in part 2 ... yeah, had to break it in two. sorry. ]

---

To clarify a few things that might've gotten buried:

[1] Many mental illnesses are also disabilities. I'm only focused on ADD/ADHD here, but a lot of what I say here could be extended easily to autism, bipolar, OCD, and others. What I dislike is the hidden connotations in that term: mental = "all in your head" and illness = "something curable". As though it's acceptable to dismiss the illness and/or expect one to get better! The truth is that any long-term condition, even those manageable with various tools/treatments, are (to me) not 'mental illnesses' but '[mental] disabilities'; they infringe on our ability to live as full a life as we'd have without them, and thus on a practical level are all disabilities to some degree.

[2] I am not saying that diabetes/heart-disease/ADD is a simplistic direct correlation, that because diabetes has clear-cut medication requirements, so does ADD/ADHD. Technically, the analogy fails already at 'heart disease', since that disease's medications are a cocktail to be carefully navigated to fit the particular patient, just like any medications for ADD/ADHD. But in terms of those who carry social prejudice against medication for mental/cognitive disabilities, the diabetes/heart-disease analogy does work, or I wouldn't freaking use it. Like all analogies, it breaks down when you go too deep, but for my purposes it holds up: medication is a valid tool.

As someone who, ironically, has responded to very few medications for ADD/ADHD, I will never tell you that my life is intact due to medication. In fact, I'm still here in spite of modern psychiatry, yet I continue to believe medication is a valid and crucial corner of the triangle of treatment. It may not work for every disease and every person, but it should not be discounted as an option, out-of-hand, either. The patient-and-doctor in question, ultimately, should make the decision -- not social prejudices about the mentally ill.

[3] If you are, or know, or think you may know, someone with ADD/ADHD, the best book I've found for concrete behavioral coping mechanisms -- with info for supportive family/friends, too -- is ADD-Friendly Ways to Organize Your Life by Judith Kolberg and Kathleen Nadeau. Just FYI, if you wanted more concrete info on how to help yourself, or a friend or family member.

[4] A much-shorter follow-up on what's going on in the brain (roughly, very unscientifically) when it comes to ADD/ADHD medication, cobbled out of the explanations of a whole lotta doctors & neurologists.

Comments

[(Anonymous)]

I remember the difference it made to my oldest brother when he was diagnosed with dysgraphia and ADD just as he was starting his second attempt at college.

He spent years with teacher's getting on his case for not getting assignments done because no one, not even him, realized just how harder then normal the assigments were for him. It's a very unpleasant place to be.

Kat

[kaigou]

Ayup. There is honestly nothing quite like the relief of finally knowing there's a solid reason and that it's not 'all in your head'. It feels like everything you are just got about as validated as it can get. Times twenty.

YES.

[wilhelminabenedict]

I wanted to make some kind of post on this but struggled with putting together all the words the subject deserved. I think I'll link to you.

[kaigou]

*looks back at post*

Holy crap, you can have half of them -- I think I used enough words for several posts. I think I need an editor... or maybe it's just that this is one of the few areas where you'll ever see me launch into truly incandescent rage. I think I stayed calm enough that it's not patently obvious in every line, but man, I still feel it. All I can keep thinking is: what idiocy, what destructive and cruel idiocy.

[law_nerd]

There's a million and one other things that I could say (have tried to say but they all devolve into incoherent flail), and they all pretty much boil down to: Yes! and Thank you!

Especially, Thank you.

[kaigou]

You're welcome. I honestly didn't mean to go on for quite that long (and if I'm lucky, I'll suddenly snap to with brilliant insight on where to trim it down some so it's not quite so unmanageable for folks), but... still. I do at least feel like for once I managed to say all I wanted to say.

(I should also note that it took me all day to write, between distraction, momentary hyperfocus, and more distraction. Par for the course.)

[kathmandu]

"Our society equates "medicine" with "feeling bad", therefore, feeling good means no need for medication!"

[snark] Since I'm not pregnant right now, that means I can stop the birth control pills, right? [/snark]

[kaigou]

Is this a bad time to mention the hospital I used to work for classed 'pregnancy' as an 'illness'? By which logic, you're right! Stop taking the pills now -- and save them up for when you get really pregnant sick pregnant sick uhm....

[onyxlynx]

This is a thing of beauty. (35-40 years ago, I knew people who encouraged people with biochemical imbalances to stop taking the medications that gave them some equilibrium, as well as someone who had, and -- Um. Not good.)

I'm linking to this both because it says everything and because I thought the "assistive technology" example was apropos. Zowie.

[kaigou]

As has been noted elsewhere, ADD/ADHD is far more complex in truth than what I gave here -- but when you actually get to the issue of living with it, on a pragmatic level, it really does act more like a cognitive disability with major learning disability aspects. And for a long time I struggled with being known as having 'a disability', until one day I realized that here I was kicking myself for being broken, and around me were people with seeing-eye-dogs and orthopodic shoes that let them do track and eyeglasses and medication for diabetes and heart disease. And it dawned on me that this mental condition -- however you want to class it -- does have an effect, and does have a treatment. So why shouldn't its treatment be equally valid, as any other disability?

Sometimes I wonder if I would've spent so many years hating myself, if I'd been given that kind of a positive look on things from the very start.

[manifesta]

Word.

[kaigou]

(hahahaha, I write what, two thousand freaking words and that's all you can manage? Oh, wait, I get it, I maxed out the DW quota for the evening. ALRIGHTY THEN. I'll be moving along now. Ahem.)

[mikkeneko]

I remember brushing the fringes of this argument before, although what I mostly remember from the argument was someone photoshopping an old Calvin and Hobbes comic strip. In the altered version, Calvin is working diligently on his homework, and remarks that the medication is really working. Hobbes suggests that he come play, is ignored, and reverts into a stuffed animal.

The message being, I suppose, that by giving medication to our children we are killing their creative souls. Leaving aside how wrongheaded an approach this is -- that at least in my understanding, ADHD is as destructive to CREATIVE impulses as it is to everything else, due to the inability to maintain focus on them -- what pissed me off about this argument is the assumption of outrage that, for Calvin and by proxy every other child with ADHD, it's more important that their creative expression be allowed to run unchecked than that they should be able to do school and house related everyday living tasks. After all, schoolwork is dull, it's boring, and worst of all, it's conformist. Children should be able to play every day all the time!

Okay Rosseau, that's fine when we have Calvin, a comic strip character who is never going to grow up. He'll stay six years old forever and he's never going to need to be able to write well and coherently, to do simple arithmetic, or have even the slightest understanding of the world in which he lives. He can play in the woods and pretend spaceship games for the next thirty years with no untoward consequences.

But for real children who exist outside of comic book strips, they don't have this luxury. Because real children grow up. We grownups don't force kids to go to school and do homework for sadistic kicks; we do it because the purpose of childhood is preparing an incomplete human to function as an adult in society. And yes, that involves the tedious details of learning to do arithmetic and the basics of written communication. The idea that a child should be allowed to go unmedicated because you find their crazy antics to be more entertaining than 'boring' schoolwork is, to put it simply, monstrous.

[kaigou]

at least in my understanding, ADHD is as destructive to CREATIVE impulses as it is to everything else, due to the inability to maintain focus on them

Your understanding is accurate, and it's not just my experience, but that of many others I've known with ADD/ADHD. The worse the ADD gets, the less creativity there is. Or more precisely, the less ability there is to channel that creativity in any constructive direction. It, like the attention, becomes diffused. I'm never even an eighth as creative as I am when I've been on a medication that works. (Plus, then I can even finish what I started, as well! Damn sight harder to do that, the rest of the time, and impossible when the ADD triggers depression.)

The idea that a child should be allowed to go unmedicated because you find their crazy antics to be more entertaining than 'boring' schoolwork is, to put it simply, monstrous.

I think it's because most people see medication, excuse me, 'drugs', to be more damaging than damage taken just by existing, sans meds. I find when you express it as an analogy of a tool -- one that should be fitted to the person, specifically -- then people's minds start changing; ie: you wouldn't stick an adult's prosthesis on a child; you'd tailor the prosthesis to the specific child. That's why I'd rephrase your words to say, it's not just the entertainment of crazy antics -- it's more like refusing to let your child have glasses because it'd crimp his skull and make his ears stick out. If that's so, it's still considerably less damage than he'll take every time he falls down the stairs, the hillside, or off his bunkbed because he couldn't see and avoid the dangerous drop. Plus, such a ridiculous but concrete example tends to make people see what is otherwise nebulous -- this stuff going on in the brainpan -- as something, for once, as concrete as any other physical disability.

A'course, at the rate things are going, I'm not holding out much hope for Lindholm.

[maire]

I'm torn.

I love the Calvin and Hobbes fan-cartoon, but your post is both moving and *right*.

I don't know Ms. Lindhom, and I don't know enough about her daughter or her daughter's friends to know if any of them suffer from any disorder that would make Ritalin a useful drug for them to take.

However, I do know that I don't want to live as who my genes say I am, and I don't think anyone who has a better option should have to do so.

At times when nothing else has helped, antidepressants have made my life infinitely more livable. I don't like the side effects, which have included loss of creativity while on the drug, but I'd take that any day over the crippling anxiety, pain, and depression that the drug was there to help with.

The equation of emotional and mental disorders with creativity is an oversimplification at absolute best, and pernicious at worst.

[kaigou]

I don't know Ms. Lindhom, and I don't know enough about her daughter or her daughter's friends to know if any of them suffer from any disorder that would make Ritalin a useful drug for them to take.

Me neither, really. I can only quote the woman's own words back at her. And I don't believe that Ritalin is the marvelous cure-all -- hell, it worked for two weeks for me, and has never worked again, period. (Even despite re-trying it three different times in the past twenty years, just on the slim chance that maybe it'd 'come back' and work again. Nope.) For that matter, I don't believe meds are always the ultimate answer, but they are one of the answers, which is why I also mentioned behavioral and psychological tools, as well as medicinal. The best route is a three-prong attack, because ADD/ADHD can also respond to behavioral patterns, just as it can negatively affect one's emotional stability, which in turn can create some pretty self-destructive thoughts/behaviors in the process of trying to find coping mechanisms. Solid therapy is a crucial component, to break down what you learn -- and it's not like this is the only disability that requires such. Someone newly blind must learn to deal with the situation, just as someone newly diagnosed with heart disease must unlearn those bad eating and exercise habits and learn new ones.

I don't like the side effects, which have included loss of creativity while on the drug

Some drugs have affected the speed of my thoughts (which, frankly, is kinda the POINT, but hey), but I've never had a drug make me half as thoroughly uncreative and unmotivated like full-blown severe depression. I have yet to ever find a single instance, even a heartbeat's worth, of creativity while depressed that can rival anything of what I experience when not depressed. Which boils down to: I really really hate that bullshit linking creativity with mental disorders. It's like some kind of sick consolation prize.

[seren_ccd]

Thank you very much for writing this. It not only restores my faith in humanity, it is simply good to see others that understand how things really are.

So, thank you.

[kaigou]

Heya, no problem. I figure if mouthing off to a published author in my own genre means I'm ruining my chances of ever being published, well, then. I might as well do it for something that matters, and to me, this matters.

[cairmen.livejournal.com]

Astonishing post. Thank you.

[kaigou]

And thank you, for reading!

[marina]

Thank you for this post. Just... thank you, a lot.

[kaigou]

I figure my experience has got to be worth something, at this point, and if I'm really lucky, maybe it'll even help someone else avoid all the things I couldn't avoid.

[laughingrat]

Mental illnesses are disabilities too.

[kaigou]

This is true.

Unfortunately, I had to draw a line somewhere as to what I'd address and what I'd leave for others to address. If I weren't someone who writes four thousand words at the drop of a hat, I probably could've had the space to address what I did and more... but, to my everlasting frustration, I'm not. That meant narrowing the topic if I couldn't narrow output.

On the other hand, it's not as though the concept of tools is only applicable to disabilities. To see medication as a tool, equal to things like prosthesis or eyeglasses or seeing-eye dogs, would go a long way towards de-stigmatizing the taking of medication (for any reason). So I guess you could say if it's a meme, let's get it started (medicine = tool), and then we build on that, expanding the metaphor outward.

[littlebitca]

Brava!

My great-nephew just finished first grade with the help of ADHD medications (in his case not Ritalin). He's on one dosage in the morning that lasts him through the day and until about 6-7 pm, when you can actually watch his ability to focus dissolve. His pediatrician doesn't want him on two doses, at least not yet, and they've had to adjust dosage amounts with his growth spurts. What this does is help him be functional during the school day and homework time. It doesn't destroy his creativity, it allows the others around him to work in an environment that isn't being disrupted (as much as that can apply in first grade, heh).

Her stories about how 'all' her daughter's friends take Ritalin as if they were drinking coffee weren't anything but anecdotes about how Ritalin can be abused. It's not an attention-enhancing drug of choice, which is how she portrayed its use. Seriously, if their physicians were prescribing it for "use if needed, as determined by a teenager" then I have to question their credentials.

I know I can be cynical, but what I read underneath all this was "I am bipolar, and not taking any medication and that makes me awesome -- I even read a book that says it makes me awesome -- so if my daughter doesn't use medication she can be awesome too!!" Yeah.

[kaigou]

I really hate that Ritalin gets all the attention, though at the same time, it amuses me. I suppose because, not ever having had Ritalin really work for me (except once, and then... whoosh! stopped working, which it will do, for some brain chemistries) -- I've never had to deal with someone knowing the medication I take and immediately guessing the reason I'm taking it. Back when I was first diagnosed, it's true that anything resembling ADD/ADHD immediately got high dosages of Ritalin thrown at it (and if that failed, next up was Dexedrine, and then they moved into MAOIs out of desperation)... but it hasn't been true for a long, long, time.

Thank you

[(Anonymous)]

I'm here via AndrewDucker (I'm meaningrequired on LJ)

This is beautifully written. I would like to print out multiple copies of this and carry it around, giving it to people as soon as they try to criticise. Your diagrams are perfect descriptions of the attention problem.

I have recently been diagnosed with ADD. I have struggled my whole life, and learned to accept unspoken and spoken criticism. Accepting it, because of course I must be x, y and z, because there's nothing wrong with me, is there? And accepting that I must have a terrible temperament because I get angry and frustrated when I'm in the cinema and I'm overwhelmed by the random perfumes and rubbing of loud polyester clothing.

I'm so angry. I can't seem to stop being angry.

And yet, I feel impotent because no matter what I do, only a handful of people will accept that I am different and make allowances. The rest, even knowing I have ADD will deny it or have their own negative expectations that will make their company unpleasant.

[kaigou]

I didn't get into how angry we become, as a result of the frustration, but you're right that it's a huge (if frequently unspoken) component. And it doesn't help that I think we also have every right to be angry for the way we're dismissed or derided as we try to cope with the effects of the disability, all that crap about growing up and getting over it. It's just anger upon anger and frankly, the only part that doesn't get a rating of 'perfectly justified' is the kernal at the bottom that's just simple frustration with beating our own heads in to try and destroy our square pegness when the world's all round holes.

There is stuff out there for adult ADD/ADHD, but all I can tell you is what I've learned: when it comes to concessions, think of what you want, what you need (a quiet room, an unbroken hour without interruptions), and then work backwards to think of a reason to want that, a way to express it, that doesn't require you deal with other people's prejudice about mental disabilities. Lie like a goddamn rug if you have to, because it's your mental health on the line, and the only reason you'd say anything is to satisfy their little minds, so you give them a little excuse that can nicely fit in their little minds. "Oh, I just do better when things are nice and quiet," or "Sometimes you just gotta take a minute, clear your head, y'know?" They can handle that because sometimes they need that, too, and they don't need to know how much it matters to us, how crucial it is.

And the second one I mention is because the only way I know to deal with the frustration and anger and other-people-idiocy-anger is to walk the hell away. Just excuse myself for more water, more tea, whatever, and leave for five minutes. When I work in an office, I drink a boatload of tea -- not because I like the tea at work (it almost always is cheap lipton) but because unlike coffee or water, which you just pour because it's usually got a waiting pot/faucet, tea requires heating the water, steeping the bag, getting out sugar and milk. It's a time-consumption thing that means you aren't just "walking in, getting soda, walking out again".

It's an external imposition of a minimum time for the task, one that other people understand and see as perfectly normal for those who drink tea. Meanwhile, I'm using those minutes to keep from falling apart or flying apart or just to calm myself down so I can plunge back into concentration-mode... but they don't need to know that. As far as they know, I am simply VERY DEDICATED to my goddamn cup of tea, and that three minutes of steeping is part of my ART of the freaking PERFECT CUP of tea. And, they'll laugh, they're very picky about coffee, so to each their own, eh?

I've learned lots of tricks like that, over the years. Sometimes I really wish, though, that someone had handed me the list at the very beginning, because I really would've rather have learned from someone else's mistakes, rather than my own.

[jonquil]

Thank you. Thank you so much, for all of this. And especially the part about what it's like to be ADHD in the workplace. The medication I take for migraine makes me scattered in exactly the way you describe, exactly, and I blamed myself -- and then when I finally spoke up and said "You know, I blamed myself for not concentrating, but the truth is that I can't, that this is a medical condition, I need an accommodation", I was punished.

[kaigou]

The punishment we get for admitting disabilities is why I mentioned that I do think a component of life with a disability (especially an invisible one) is learning how to get the concessions without telling anyone you're doing so. It requires a mentor who's done it, or having the disability long enough that you learn the tricks of what to say, how to say it, how to frame things, so you get what you need without ever coming out right and saying that you're on a medication or that you have a disability (and dog forbid you ever have to say you've got a mental illness). Basically, you think of what you need, and then work backwards from that, to figure out a way to frame your request such that you're implying a reason that you can see would be respectable (ie: not tainted by 'mental illness') to other people.

[annotated_em]

Absolutely bravura response to Lindholm. *standing ovation*

[kaigou]

Heh. Incandescent with rage does seem to end up translating into several thousand words of annoyance, though I'll always envy the folks who can get their anger out in a short and succinct post. Le sigh.

[wieselkind.livejournal.com]

"She'll be the person who never lives up to her potential.....hyperfocused into excluding all else in a last-ditch attempt to somehow, someway, get something done without distraction-diffusion tearing her away."

This paragraph ( elipsis for brevity) describes how I feel/behave pretty often. I've forgotten regular evening classes more than once, just because out of sight out of mind really is in my case.

Although afaik I've not got ADD, although I have been diagnosed with dyspraxia/dyscalculia, so there many be some symptom overlap.

[kaigou]

The ability to hyperfocus is, I think, something that's a coping mechanism that grows out of the pressure on someone with ADD/ADHD to compensate for the lack of focus. It's over-compensation to the extreme, but that doesn't mean that anyone else couldn't learn the same. My suspicion is that if there were other factors pressuring you (or anyone) to over-compensate and to over-focus, then you might've developed the hyperfocus skill as well. Now that I think of it, a friend of mine with dyslexia also had phenomenal hyperfocus skills when he was reading, probably because he'd learned that fighting his dyslexia meant focusing completely and utterly with every ounce of his attention.

The hard part is un-learning the hyperfocus, or at least learning to mitigate it. Like any tool, it's a good thing, but not everything is a nail that deserves the hyperfocus hammer, y'know?

[genarti]

Thank you so much for this.

I'm lucky to have a very mild case of ADD -- mild enough that I didn't get diagnosed until my senior year of college, when my little brother was diagnosed (thanks to having a much harder time with assignments and organization than I ever did) and my other brother and I said "Heeeeey. All of that sounds really really familiar." My little brother got a Ritalin-equivalent to take at need for tests and papers, and it did him a world of good. So did I; I almost never use it, but it helps a lot on the rare occasions I do need to focus on something I hate enough that even with deadline panic (my fallback coping strategy) it's hard to make myself prioritize.

My mother I suspect has an even milder version. My father doesn't understand why I couldn't just buckle down and do my math homework before the last minute, and why we always run late.

I can function without medication, in school and in the workplace. Others can't. This doesn't mean I'm stronger or better or a more special snowflake; it means I lucked out and got a really mild case. I absolutely refuse to be complimented by Ms. Lindholm for the luck of the genetic draw. (And the luck of a family that taught coping mechanisms without realizing they were doing it -- and, much more importantly, the luck of a family who has a sensible attitude towards brain chemistry and the compromises one makes to function in daily life. I shudder to think how it would have gone with a family with Ms. Lindholm's attitude and a worse case of ADD on my part -- and I know how, because I have friends in that situation.) I can't function without eyeglasses -- or I couldn't without being the person in your example, with a blurry world and quiet day-long panic -- and my little brother has never needed any vision correction. You use the tools available as best you can to improve your life; that's all.

Again, thank you for your eloquence.

[kaigou]

It seems to be the most common path, to have the youngest in the family diagnosed and then have others in the family go, 'hey! me, too!' In my family, it was my father who was diagnosed first, and only because an article had come out a month or so before in which an adult talked about his nephew being diagnosed and realizing the same symptoms applied to him. My father's therapist was like, wait a minute... and he handed copies of the article to my parents, and both my parents said after only a minute of reading, "yes!" After that, my sister and I went in and almost immediately I got pegged, as well. (My sister's case is so mild that it's almost negligible, compared to her bipolar issues.)

I think what's most valuable, ironically, about the fact that ADD/ADHD tends to run in families is that once the family's aware, then you have a concerted, joined effort in dealing with it, because it affects all of you. In that way, the resolution of being diagnosed is certainly an opportunity for a family to become a lot healthier and stronger, just in the course of creating more productive behavioral patterns for itself.

[ajnabi]

Thank you for writing this post. It is amazing. I am going to bookmark it (do you mind if I do so publicly?)

I have my own bucket of internalized shit and privilege about medication, and I'm trying to break out of it. I think what I'm realizing more and more is that regardless of whether meds work for me or not, I have no right to judge someone else's decisions, especially if that someone fucking needs those meds to survive (and it is sad that society tends to privilege more visible/"physical" things, as opposed to "mental" things) .... then I really have no right to say anything about it other than to support them wholeheartedly.

My father and many other people have told me so many times that my suicidality and my psychosis is really just because I am *creative*. That my ocd, even when it becomes really really psychotic, is just because I am *such a good person* and I worry about bad thoughts because I'm *so good*. It's very hard to believe that it's okay to take meds when this is the kind of message I get. I still feel like I'm letting myself down. I don't know where I ended and the drugs began. But maybe that isn't the point at all. This summer I'm trying to find a psychiatrist and maybe go on new meds, maybe antipsychotics again.... and I'm terrified, for all the bad things that have happened in the past and all the people who would rather see me be *creative* and *strong* and *good* .... but I'm going to try, I think.

[kaigou]

If you follow the various links other folks have made, to the comments in other posts, like some of the comments here, there's an ongoing discussion over this pernicious thread of conflating "mental imbalance" with "creativity". I find that destructive to those of us trying to find balance, and equally destructive to people who do not have any kind of disability, in terms of what it's saying about their creativity. And, to me, it feels like some kind of fucked-up consolation prize: oh, so what if you're in so many pieces you'll never put yourself together? at least you're creative!

What I deal with is hard for me, but I also know it's nowhere near as debilitating as friends who have OCD, severe bipolar, and other major swinging imbalances -- who wants to pay that kind of price for the sake of some nebulous creativity, that in itself is invariably (from what I've seen) most often subverted into self-destructive or counter-productive tendencies because the primary focus isn't creativity but getting the hell out of that darkness?

[umadoshi]

This is an amazing post. Thank you for writing it.

[kaigou]

You're welcome, and thank you for reading.

[dragonhand]

Wow. Thank you. I think all the words you wrote were important to my understanding, so I'm glad you wrote every one. All of the comments, too. Thank you all.

I've been miserable. And angry. Very angry. And my creativity not on meds? Gone. Motivation, creativity, optimism, sense of humor, gone. Me, gone. My other meds stopped working, but I'll look into it again. And add those behavioral and mental and other methods of recovery, too.

[kaigou]

It has been very rare that meds have worked for me with any consistency (as you've probably seen me comment on, in other replies). For that reason, I find the behavioral patterns to be of utmost importance -- when everything else is fractured, at least there's that much, y'know? Plus it's something concrete that you can do, so you don't feel completely lost. Those little habits can be hard to create but they can be lifesavers when everything else is crashing -- and though you can do them on your own, I highly recommend that book because it has entire sections written for friends/family, to tell them what they can do, and how to help, and what to offer. It's obviously geared towards ADD, but a lot of depression can have strong ADD-like symptoms (lethargy, inability to concentrate, no energy to get organized, etc) -- so I'd expect there's stuff in there that's applicable, to be able to highlight a section and hand it to a friend and say, this is what I need.

I think that's the hardest part, sometimes: communicating to people who aren't in there with you, what it's like, and what you need from them. That's much of the reason I tried to write this post not for fellow sufferers but for friends/family of those who are, so perhaps they'll understand a little better how some of it works. That's the first big step, I've found, to get someone on the path to being able to be supportive.

[darkrose]

Thank you for posting this, for so many reasons.

My ADD diagnosis seemed like opening the shutters in a dark room, at first: there was a reason I couldn't concentrate on anything and that my brain flittered around like a demented butterfly. But it was the '90's, and before long, I got the message that ADD is really just an excuse, and if I'd just buckle down and be serious, I wouldn't need medication. Like my weight, it was simply a failure of will on my part. Lindholm's post brought all of that back. It infuriated me, but I was so angry I couldn't even post about it.

So thank you. Also for the book recommendation.

[kaigou]

it was simply a failure of will on my part

If I never hear that crap again for the rest of my life, it would be too soon, y'know? Frankly, I'm sick of 'trying harder'.

Your reaction was pretty much also my reaction: an immediate and overwhelming incandescent RAGE.

Although in hindsight it wasn't really because I give a good goddamn anymore, not at heart. I wear my battlescars proudly when it comes to that. It's just that I know firsthand the damage done by words like hers, and I also know she has a large contingent of younger (mid-teens to college) fans. Even knowing that her blog-readership is probably only a fraction of her overall readership, it seemed to me that one person being hurt by hearing that, all over again, was one person too-freaking-many. Like I said up top, I realized: I've got a megaphone, too, now! Maybe it's time I throw my weight around -- so to speak -- as someone who's been dealing with this for longer than some of Lindholm's readers have even been alive. Maybe I can outweigh the damage she's done, or at least balance it out.

So I figured, hey, use the damn megaphone for some good, eh? And see if I can crack DW's post-size-limit at the same time, too, it seems...

NP on the book rec. I stumbled over it a few years ago and despite finding other books, it remains one of the most concrete and friendly, especially in the way it addresses and brings into the picture spouses, children, parents, and friends.

[nundinae]

This post is fantastic and you should feel fantastic!

Btw, my flat mate right now has ADHD, so the graphs were really helpful. I mean, not that I was ignoring her before, but SRSLY a picture is worth more than a thousand words.

Thank you so much!

[kaigou]

Hey, I have finally figured out that graphics really do get the picture across... err, so to speak. A lot easier to do a picture in Adobe than to spend eight more (another eight! gah!) paragraphs trying to explain it.

As for your roommate -- if you're not aware, one element of ADHD is, of course, the hyperactivity -- and apparently for a long time the idea was to get someone with ADHD to sit down, be still, blah blah blah, as a measure of 'successful treatment'. What someone finally realized is that actually, activity helps someone with ADHD concentrate. Moving around the room, jiggling a leg, changing positions every few seconds... so if your flatmate isn't aware of it (s/he may be), you can at least be aware that as a supportive flatmate, you might want to make it clear that you're not going to get irked if your flatmate paces while studying, or reading, or doing anything that requires concentration. I've known ADHD folks who are terribly insecure about their hyperactivity, after so many people snapping at them to just sit still, for once! as though it's the ADHD person's intention to be annoying.

Just FYI, and thanks back at you, for reading!

[kaigou]

I'd say this is a post where the usual "please introduce yourself" rules are suspended pending your own comfort zone. So no worries, there.

I do get your reaction, totally. What I find peculiar about my own is that I also know from various family members being ill in other ways, that the whole "because this is your HEAD therefore drugs are BAD mmkay" crap, when if you look at pretty much any illness, it's going to have the same triangulation of treatment that you need for dealing with any mental illness: behavioral, psychological/emotional, and medicinal/physical.

I mean, someone goes into the hospital for, say, ulcerated stomach: they don't just get drugs and/or surgery, they also have to face behavioral changes like eating less (or eating less of something in particular), getting on a regular sleep pattern, not running five miles in the morning, whatever. There will be some kind of behavioral change, long-term or short-term, from any illness or disability. And those behavioral changes, along with the side-effects of any medication or the after-effects of any surgery, are going to raise emotional issues, even if it's "I need to keep my stress level low, so as to let myself heal properly". What? You're already massively stressed about being sick! And thus, emotional and psychological aspects must be addressed, and moreso if the surgery may radically alter your perception of yourself -- as a person with a fully operational set of kidneys, as a person who can bear/have children, as a person with both breasts, whatever. Even positive surgical results will still have emotional ramifications, and good doctors know this.

So the entire premise -- that medication is bad in situations where we're talking about the brain -- also draws the parallel conclusion that the way you treat mental stuff is somehow different from physical stuff... and the fact is, they're not. Not when you get down to the nuts and bolts... and I think that's the underlying reason I got so pissed. Because it's not just an offense to people with mental disabilities, it's also offensive to people who've struggled with psychological and emotional aspects of simple physiological illnesses.

[leorising]

Thank you for educating me about this disability. I am one of the people who characterized it in with mental illness (meaning depression, personality disorders, etc.) and am grateful to have my terminology put on the right track.

What struck me the strongest in your essay is your mention of problems in the workplace. I, too, have had a lifetime disability (if undiagnosed for 50 years) that made it seem to others as if I was acting out, or deliberately self-sabotaging, or any number of other very negative things. The truth was, the harder I pushed myself, the faster I fell apart physically, and would have to take sick days to recover. I averaged about 3 years at each secretarial job I had, because of my many absences and the negative attitudes it generated with my bosses and coworkers.

And you're right, when I was finally diagnosed recently, I was finally able to overcome those negative messages, flip them all off mentally, and regain some of my lost self-respect. What a confidence builder!

I don't have much to say about ADD/ADHD myself, because I haven't had much experience with it personally. I accept what you're saying, though. The eyeglasses example was inspired, and the pie charts were very helpful.

Thanks for this.

Sorry if I sound like a dork, I had to read this in two pieces (slow reader) around a rather long day trip, so I'm tired from the trip, too.

[kaigou]

I am one of the people who characterized it in with mental illness (meaning depression, personality disorders, etc.) and am grateful to have my terminology put on the right track.

I'd say it's open to debate whether I'm on the right track! I can only explain the issue I have with that phrase, and my sensitivity to the assumption hiding in the combination (mental + illness). ADD/ADHD is more properly a neurological (and cognitive) condition, but that's not really any less fuzzy than some of the other ways to classify, and if you're not up on your SAT words, it's not really very explanatory as an adjective, so I avoid it. For the most part, when it comes to everyday life, it's something that disables you on a long-term, no-real-swing, kind of way. (As opposed to some of the other conditions that can flare up, then subside, then flare up again... ADD/ADHD does that in folks with lesser-severity, I'm told, but the more severe you're talking, the more likely it's just a fact of daily existence.)

And you're right, when I was finally diagnosed recently, I was finally able to overcome those negative messages, flip them all off mentally, and regain some of my lost self-respect. What a confidence builder!

It IS, isn't it? I had a coworker a while back who said something near the end of a meeting, about how she'd be working slightly different hours after being diagnosed with (something I can't recall now, but physiological). She needed to keep her stress down, and of course -- since we're talking physical, not mental -- I wasn't surprised to see everyone willing to support. What did surprise me was realizing that she was having trouble looking upset, and that it was this fact (of her barely-hidden joy) that had some of the team a little, hrm, well... not sure why, exactly, but clearly a little... startled. Probably couldn't put their fingers on it, but if she'd been more apparent, I guess they would've been like: oh, she must be faking it. I caught her in the hallway afterwards, to let her know I totally got why she was so happy, and she just about turned into a puddle right there, maybe because I was the only other person on the team who'd dealt with being diagnosed after so long of not-knowing, so I definitely got the bizarre kind of glee and freedom that comes with FINALLY KNOWING.

I am finding that pie charts are perhaps my SEKKRIT WEPIN.