Here we go again. I guess I should ignore the regular hysterics that break out concerning ADD/ADHD medications. but stuff like this makes me think I think I should start stockpiling my medications, just in case.
Several drugs widely used to treat attention-deficit hyperactivity disorder should carry a prominent “black box” warning because of reports that they may have caused sudden deaths or serious complications, a federal expert advisory panel recommended yesterday.
The proposal to require a warning on medications such as Adderall and Ritalin took the Food and Drug Administration, pharmaceutical companies and advocates by surprise. The panel voted 8 to 7 to call for the labeling change after reviewing reports of several dozen patients who suffered cardiac arrest, toxic reactions or sudden death while using the medications.
It’s not that I want to downplay the reports about averse reactions in several dozen patients. I know about the 14 year old in Michigan who had a heart attack while on his skateboard. But dozens of cases is a small percentage of the millions who are taking these medications. I can’t help wondering if there isn’t some degree of alarmism coming from people who are opposed to any medication used for psychiatric purposes. And some of what I’ve read in the articles about the recent FDA advisory board decision lead me to think that may be the case.
Of course, I’m biased because I’m among the people who have been helped immensely by ADD/ADHD medication, as one advisory board member noted.
“On the surface, it is hard to believe,” said Curt Furberg, professor of public health sciences at North Carolina’s Wake Forest University Medical School, who voted for the black-box warning. “What is also interesting is this condition is not really recognized in other countries — you wonder what we are treating. I am sure there are patients who need these drugs, but it is not 10 percent of all 10-year-old boys.”
No it’s not 10 percent of all 10-year-old boys, but if someone had diagnosed me at age 10 and given me a prescription it would have made a world of difference.
I’ll gladly concede that, but it’s the previous statement that raises my eyebrows: “…this condition is not really recognized in other countries.” Translation: “this is not a real disorder/syndrome/condition.” It kind of takes the wind out of acknowledging that there are patients who have benefited. Besides, maybe just imagined those benefits. After all, if ADD/ADHD is not “real” then it’s most likely a moral problem, so we’re probably just too lazy to just get over it.
And then there’s Dr. David Nissen, one of the advocates for “black labeling,” as quoted in the Washington Post.
“I felt strongly we need to slow the growth of utilization,” Nissen said, adding that about 2.5 million children and 1.5 million adults are taking the drugs. “When you have that kind of exposure for drugs that are suspicious, that does create a major public health concern.”
And the in New York Times.
“I want to cause people’s hands to tremble a little bit before they write that prescription,” Dr. Nissen said
Actually, it’s Dr. Nissen’s statement that makes me tremble a bit, because it’s spoken like someone who doesn’t have ADD/ADHD and doesn’t know what it’s like. If that point of view prevails, I can guarantee that as a result more people will go without the help that they need. Either because doctors who might otherwise prescribe these medications will be more wary of doing so, or because the patients themselves will be made wary by such warnings.
As for “alternative treatments” I tried them when I was first diagnosed, because I was initially wary of stimulants (and that was before the recent FDA advisory). They didn’t work very well for me, if at all. I tried non-stimulant medications along with dietary changes and supplements, and I still struggled. It wasn’t until I got fired from yet another job that I had enough and asked my doc for the stimulant medication.
In my life prior to diagnosis and medication, things just got progressively difficult. I managed to get through elementary and high school due to my ability to compensate for my difficulty with focusing and attention. But each year I struggled a little more, and always to the constant refrain “If you’d just try harder … If you would only focus,” and it was never enough. In college, I hit the wall at the start of my sophomore year, and could only finish my undergrad degree by taking a partial load of classes. I managed to graduate in just over six years.
Then I graduated and went to work. Transitioning to college meant losing some of the things that helped me compensate. Transitioning from college to the workforce meant losing whatever else remained. Basically, on almost every job, I either got asked to leave, got fired outright, or managed to leave just ahead of being fired (often just barely). I tried just about everything. I made “to do” lists. I had more meetings with my various bosses about my tasks, etc. I got organizers and made valiant attempts at using them. It always ended the same way; with me making an exit one way or another.
That pattern didn’t change, nor did my ability to change it, until about four years ago when I got a diagnosis and the right medication. Since then, I’ve had and left a few more jobs. The difference was that I left on my own terms, not because I got fired, or was trying to escape being fired. In fact, post-diagnosis/medication I got the best performance reviews I’ve ever had, and even occasional praise for my work. That never happened before.
And it wasn’t just the medication. I also worked with a coach on strategies to help me manage better and to work around what remained of my symptoms (because ADD/ADHD never really leaves so much as it abates with the right treatment). But the medication made it possible for me to focus in a way that I couldn’t before, and thus I could use various tools and coping strategies more effectively as a result. Once the fog was lifted even a little, I could see what I needed to do and I had enough focus to do it.
There’s some argument to be made that people with ADD/ADHD are not “disordered” so much as we just have the misfortune of living is a culture that doesn’t value, and even discourages, the traits that make up ADD/ADHD. Thom Hartman does a pretty good job of describing it with his “hunters vs. farmers” theory, particularly in his “Damaged Hunters” essay.
When people grow up being punished for being the way they are, they become damaged. They think of themselves as misfits and incompetents. They lose their own personal power, become shaken and fearful, and develop a variety of compensating behaviors—many of which are less than useful.
What you—the parent, teacher, counselor, or physician—what you tell the ADD child about himself can have a decisive effect. Children respond very differently to being told “This is how you work” instead of “You just don’t work right.”
… Every type of culture puts enormous amounts of effort into educating and inculcating cultural values into their citizens. That’s how it becomes a culture.
…And so we train our young. We reinforce and strengthen in them those behaviors, assumptions, and beliefs that we find useful as a society, and we discourage or crush in them those that are not useful or even counterproductive to the orderly flow of our culture and its work.
Hartman goes on to suggest that mediation may not be the right way to help children with ADD/ADHD (and probably adults as well), and seems to be saying that what’s needed is a cultural change in how those children/adults and their unique “gifts” related to ADD/ADHD are valued. So, he believes ADD/ADHD is real in some sense, but prescribes different treatment. It sounds good, and it’s an ego boost to anyone with ADD/ADHD (“I’m not the one who doesn’t get it! They just don’t get me!). But that social change is going to be a long time coming, if at all. In the meantime, some of us have to find a way of coping in a culture where our “gifts” are mostly seen and treated as flaws and liabilities, and without having too bumpy a ride along the way.
So, as I’ve said before, they can take my meds when they pry them from my cold and dead hands if it means returning to some semblance of my previous life. To be honest, the thought of going back to the way things were and the way I used to function scares me. There’s no way it wouldn’t be a huge loss, a huge step back. I’d rather just give up, scale back, take odd jobs or just not bother trying to do anything at all, rather than go back to pushing that rock up that hill. It always rolls back down again anyway.
While it doesn’t look like anyone will be confiscating ADD/ADHD medications any time soon, they may become a bit more difficult to get; maybe a lot more difficult for some people. That may cut down on over-prescription of stimulants to some degree, but it’s inevitable that some people will be sentenced to struggling through ADD/ADHD without adequate treatment, or without any at all.
And if you ask me, that probably the intent, at least to some degree, and it’s coming from people who don’t believe that ADD/ADHD is real and that it has real consequences for people when it goes untreated. My story isn’t one of the most extreme examples of going untreated. For others, the consequences include violence, jail or prison, and even early death. For some people, that makes sense: bad endings result from moral failings, not psychological or mental difficulties. People just need to “try harder” and “focus more,” even it recommendations like this ultimately make it more of struggle for some people to do just that.
Not me. Having experienced “better living through chemistry” — and a level of success that seemed out of my reach prior to it — I’m dead set against going back and doing it the hard way; or the harder way. It’s not that I doubt the value of struggle. I’m sure some people benefit from it. It’s just that I think it’s way over-prescribed.