When the Bird and the Book Disagree...

Patient Expert

"When the bird and the book disagree, always believe the bird."
--James Audubon (1785-1851)

I was on a phone meeting the other day (I know you're shocked to hear this it seems to be all I do) and found myself being confronted by a well-meaning health care professional trying to teach me the correct way to talk about the consumer/provider relationship. I was told that the word "consumer" is demeaning and that doctors are not "providers" but rather "collaborators." I was also told that "patient" is a better word to use and that "health care professional" is preferable to "provider."

I have to say, to my shame, that I thought this was pretty funny.

Now, I've sat in consumer meetings where language has been debated for hours on end I'm NOT exaggerating. "We are only patients when we're in a hospital or seeking care," some say. Others suggest the term "people living with a mental health condition" as a good choice. But, what is a "condition," others ask? Is it like a skin condition that goes away eventually? Should we talk about mental "illness" or mental "health?" Are we "people in recovery" even when we're in the middle of a challenging time? Should we talk about "behavioral health" instead of "mental health?" Am I a "consumer" like a consumer of electronic goods who has power over choices and options even if I'm not voluntarily purchasing anything?

But back to the phone meeting ... what I really thought was funny was the response I got when I gently talked about the various consumer perspectives on language. First, I heard about five seconds of silence, and boy, is that a long silence on a phone call! And then, I heard someone mutter, "Welcome to our world."

But here's the real deal: I was the only non health care professional and the only consumer on the call.

I was haunted for days thinking about what that person muttered ... that somehow "I" was being welcomed to "their" world. If the world of mental health "belongs" to anybody, shouldn't it "belong" to us consumers? Why is it the providers' world? And how have we allowed that to happen? As trained as they might be (and, believe me, I have my moments when I doubt the quality of that training), they really don't know the world you and I live in.

I was talking to a wonderful author/artist/TV producer a consumer a few weeks ago who shared with me how hard it was for he and his therapist wife to coexist. At the end of the day, she really didn't understand what it was like to live with bipolar disorder, even though she had a PhD. Her professional life was dedicated to helping people just exactly like my friend, her husband. Her frustration with him, and her lack of deep insight into what these illnesses do to us, put a strain on their marriage. My friend told me he thought she had the harder path in their marriage, but I wonder....

We live in a time when both consumers and professionals on the leading edge of mental health are trying to change the dynamic: from "the professional in control of a passive patient" to "an equal partnership between a person in recovery and a provider of services." Each of us knows what we know. In a perfect world, those unique areas of knowledge will equally contribute to the perfect treatment plan. It's a hopeful time, but it isn't going to be a quick, or easy, change.

In the meantime, I have one piece of advice for providers. In the words of the late, great James Audubon: "When the bird and the book disagree, always believe the bird." And for the record, I am the bird ... it's my world ... and you need to pay attention to whatever words I choose to describe living in it.

Where do you weigh in on the language used in the mental health field?