Words matter. The labels we are given or choose to use matter. Language structures how we think, and how we think structures how we use language.
Once we were victims or sufferers.
Then we were patients (and if we were lucky, ex-patients).
Person with X.
All problematic in different ways, but none as problematic for me as the trend to call us users or consumers of the mental health care system. My mental illness is not a commodity. To deal with it, I am not choosing or shopping or consuming or using the mental health care system. That implies that there is actually an array of effective, accessible, affordable, respectful options from which to choose. To commercialise mental health care (and all health care), to position the people who need health care services as users, as consumers, as if we are freely choosing to use and consume resources, as if we are the same as anyone shopping at WalMart for plastic toys made by kids in factories in overexploited countries, is to make illness and its treatment on par with any other goods and services in a capitalist system. That is absurd. Getting help isn’t as simple as picking out canned goods at the grocery store. Health care is not a commodity, and illness is not a lifestyle choice.
I am not a patient or an ex-patient (never having been admitted).
I am not a survivor (being yet in the middle of what has to be survived).
I am not a victim or a sufferer or a depressive (my illness does define me, but only in part, only as one part among many).
I am not anything others choose to label me. I am not my illness, but at the same time my illness is not separate from me. I am not going to market with a basket over my arm to choose among various options for consumption.
We are not consumers. We are the consumed. We are being eaten alive by our illnesses and traumas. We are being feasted upon by journalists and fearmongerers. We are fodder for comedians and bullies. We are picked apart by side effects and stigma.
The designation I am most comfortable with right now is “person with lived experience.” It is cumbersome, I know. Far easier to call someone schizophrenic or bipolar or crazy. But what I am is a person with lived experience of mental illness. This phrase, to me, affords me both privacy and dignity. It does not say whether my experience is current or in the past. It does not say what my illness is. It gives the choice to reveal more or not. It grants me at its core the basic truth that what I have is experience, and from that experience comes expertise in my own life and needs. I have a lived experience, lived in my body and my mind, of struggling with mental illness, and of struggling with the world around me because of that. I have lived experience with competent therapists, and with awful ones. I have lived experience with supportive physicians, and with physicians who were steeped in ignorance and stereotypes about mental illness.
Even when we feel the craziest, our lived experience makes us authorities on our own journeys to health. And that is a dignity and respect that labels like sufferer or victim or consumer do not afford.
Some further reading if you’re interested: