I don't think the medicine is my only grip on my sanity. But I am not eager to find out how big a role it plays. I'm a 21 year player (since diagnosis) in this game and a vast majority of those years have been happy, productive and stable. Except for a few close friends who are aware, most of my acquaintances wouldn't guess I'm someone with a major mental illness. I take the medicine. I don't always like it, but I really hate spinning out of control and ending up in the hospital. What it comes down to for me is the people I trust to care for me, doctors and family, wouldn't trust me if I didn't play by the rules. So I do.
Monica was responding to my post. Is Being a Good Little Girl Dangerous?
The conversation began with this comment by Tabby to an earlier post:
I have always been told, by family and by the medical profession to "be a good little girl and do what the doctor tells you to do cause they know better than you do."
In a comment to a follow-up piece, Terri went further by asserting the "be a good girl theory is very dangerous ..."
It all comes down to trust. It forms the basis of all relationships - family, social, community, work. When the trust is not there in the first place, or when it breaks down, bad things always happen. This is why Terri is right on the money. Being ordered to be a good little girl is no way to build a trusting relationship between doctor and patient. This is especially true if our meds seem to be making us worse rather than better.
I raised this very issue at my first (and last) ground rounds I delivered in 2008 at a psychiatric facility in Princeton, NJ. Years earlier, my research revealed much lower drop-out rates in cancer meds than psychiatric meds. For instance, 26 percent of patients quit their tamoxifen over one year in a cancer trial vs nearly 80 percent dropping out of a Zyprexa maintenance study.
So, are oncologists telling their patients something different? I acknowledged to my audience I was speculating, but I managed to get them to sign off on this PowerPoint:
What oncologists may be telling their patients:
It's going to be hell, but there is an excellent chance your cancer will go away.
Then I showed them this PowerPoint:
What I know too many psychiatrists tell their patients:
What are you complaining about? These meds work. Something must be wrong with you. You're much better off than you were before. You need to stay on these drugs the rest of your life.
Today, I would instead put up a PowerPoint with Tabby’s “good little girl” comment.
Then I went to another PowerPoint:
What I'm guessing the cancer patient may be thinking is this: One year of hell - if that's what it takes to get my old life back, I'm willing to put up with that.
What I know the psychiatric patient is thinking is this: This is the best you can do? You mean I'm going to have to spend the rest of my life - like this?
Then I quoted Ross Baldessarini MD of Harvard, in a presentation I heard at the 2006 American Psychiatric Association annual meeting: "We need to be a lot more sensitive to minor complaints," he said. Otherwise, "we will drive patients out of treatment."
Very dangerous, obviously.
Terri, you have the support of a legend in psychiatry, a pioneer in lithium treatment, held in awe throughout the profession. I had occasion to talk with Dr Baldessarini a year before at a different conference. There, he told me that American psychiatrists were “cowboys” and said “patients don’t want their wings clipped.”
In her latest comment, Tabby adds a new wrinkle:
You came to them, they didn't come to you. You wanted meds and they gave them to you. You don't want to take them but you want them to help you. They can't help you if you don't take the meds they prescribe you.
It's not up to them as to whether you enjoy the side effects or not. It's up to them if the side effects cause medical and/or health harm and to that degree they are responsible BUT just cause you don't want to be semi-comatosed at work has not one thing to do with them.
This comes to the original point I raised in the article that kicked off this series: We want to get well, we want our lives back. Our doctors, by contrast, are more concerned with keeping us out of the hospital. Obviously, we don’t want to be back in the hospital, either, as Monica makes abundantly clear. But we also need to see that light at the end of the tunnel, and so do our doctors.
We all need to be on the same page - doctor, patient, family. Otherwise, there is no basis for trust. Then, bad things happen.
Monica has established that level of trust. She acknowledges she has had to make her own compromises in order to achieve it. Her reward has been a “happy, productive, and stable” life.
Published On: February 12, 2011
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