In the last few weeks, I've been in a wide range of settings where it struck me that, while people were using the word "recovery" and clearly thought they understood the consumer-centered concept, they really, really did not understand at the deepest level. I don't blame them ... it takes time to change from a system that was completely patronizing, had limited expectations for us consumers and saw its role as protecting us (or protecting society from us) ... and to move to a system that sees—as the norm—a full life for us in the community where our illness doesn't get in the way of achieving our hopes and dreams (that's my definition of recovery).
Some still do not "get" recovery ... and sometimes the signs or clues to that misunderstanding—or lack of truly understanding—are often very, very subtle. I wonder if you've encountered this misunderstanding as well....
Scenario 1: I was in a meeting with a national insurance company, and we were talking about limits on the use of/reimbursement for talk therapy. One exec from the company kept pushing the advisory group about where the line should be drawn on how many visits were allowed in the plan: "Is it based on outcome? If so, how will outcomes be measured? Is it based on the number of visits? If so, how many?" And as I pushed a little on this, I finally asked the question, "Does this mean you believe there are some people who are wasting their time in talk therapy and should not have access?" And he finally admitted that he believes that some people—say, those experiencing psychosis or mania—would not benefit from talk therapy. And while he didn't say this out loud, the next step in that philosophy would be to limit access to all kinds of services ... based on a belief that certain people just would not benefit ... would not recover.
This exec had his heart in the right place. He used the word "recovery" often. But he clearly did not understand that, even when we are at our worst, we can still function. We can still ask for what we need. We can still communicate, to some extent, what helps and does not. And limiting services because of my illness, rather than my individual need, is not recovery-based.
I don't know if you've ever heard Larry Fricks tell the story of his recovery journey. He talks about his last hospitalization when in a manic state: He was driven around for hours while a new police officer tried to find the state hospital. Larry repeatedly explained he could give the cop directions. The officer declined Larry's help because he didn't believe that, as someone in mania, Larry had the ability to communicate and participate in his own "treatment." (Now, having given this example, Larry always shares that he'll never again volunteer to help anyone find a hospital for him, not wanting to ever be hospitalized again!)
Scenario 2: I was sitting and listening to the incoming president of a large and prestigious national organization that prides itself on its recovery orientation. As a matter of fact, they pride themselves on being "the recovery people." Sadly, the incoming president urged the members to speak out on behalf of all of the consumers who could not speak for themselves.
This was a nice man. Very committed to the movement. But obviously, at his deepest core, he doesn't yet get it. If you truly understand recovery, you don't presume that we, as consumers, cannot speak for ourselves.
Scenario 3: I was meeting with a couple of researchers. These particular guys are "rock stars" in the research community. And they're using the word "recovery" right and left. But, looking back, I realize that what they were actually doing was replacing the word "treatment" with the word "recovery." So, instead of a treatment plan, they have a "recovery plan." Instead of a medication regimen, they have a "recovery regimen."
Nice, smart, gifted people. They've dedicated their whole lives to making our lives better. And these guys—the rock stars of the research world—actually have done things that do indeed make our lives better. But their focus seems still to be on process, on symptoms, and not on my whole life. They still don't truly understand recovery.
So, we have a ways to go. But I'm not despairing about this. Any big change has to start with baby steps. And I think each of us has a role to play in listening carefully and watching for these more subtle signs that recovery isn't fully understood ... and then helping people deepen and advance their understanding ... gently and patiently. Our providers, after all, are on their own recovery journey.
Do you have any other examples of how you've helped people move forward in understanding the true meaning of recovery?
Published On: July 28, 2008
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