National Alliance on Mental Illness
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Identity and Recovery: Survey Results
by Kim Puchir, NAMI Communications Coordinator
Identity is the place where people living with mental illness find the strength to start again—to believe that they deserve to recover and take the first steps to this end. An article in last month's issue followed the concept of identity through the narratives of individuals living with conditions from schizophrenia to cancer. When we asked the NAMI community to share their experiences related to identity, nearly 700 people responded to the thirteen-question survey tracing the changes their self-image has undergone in relationship to variables such as support systems, the media and their mental illness. Since science has traditionally had an easier time describing disorder than well-being, the survey results offer important insight into the way people living with mental illness conceptualize—and actualize—recovery.
Notably, confidence seems to play a big role in identity, appearing as the top word associated with the pre-illness identity and reappearing in the present-day self-concept of many people. In addition, many respondents expressed the desire to move beyond being defined by their mental illness, either in their own self-perceptions or those of others. Further research might explore ways to encourage positive qualities like confidence in the ways that are most relevant subsequent to the onset of mental illness. The goals for improving self-image offer more room for investigation: how does one "move beyond mental illness" as a defining self-concept? How can NAMI encourage nurturing spaces for individuals living with mental illness to create and experiment with these post-illness identities? The results below are a brief synopsis of each question with graphs that enlarge by hovering over the thumbnail image. Download the full report.
We asked participants to share words they would use to describe their self-image at three points in time—before they developed symptoms of mental illness, when they were first affected by mental illness and now.
The top results are depicted in a "word cloud" in which the biggest words appeared more frequently and the smallest words appeared less frequently.
Certain words appear to be very significant. "Confidence," the word most frequently associated with the pre-illness self, makes a comeback in the words used to describe the present-day self , which had a greater variety of terms competing for the top spot. "Confused" was the word most commonly associated with self-image at the onset of illness, a challenging time for a person and their self-image judging by the tenor of the other words appearing in the sample. There is a greater mix of words competing for top spot in the responses related to present-day self-image—persistent, "confidence," "happiness," "hopeful" and "strong."
The blue and light pink portions of the pie charts above, which represent "not at all significant" and "not very significant," respectively, indicate that few respondents had self-images that were unchanged by the fact that they had developed a mental illness. Most people (51 percent) said that mental illness was a "significant" (33 percent) or "very significant" (28 percent) factor in the way they perceived themselves.
By contrast, a larger portion of people saw mental illness as "not at all significant" in the way acquaintances perceived them, suggesting that they felt it was a matter they could keep private. Many respondents felt that people who knew them well saw their mental illness as falling in the more significant categories than did the acquaintance category.
We asked participants how media content related to mental illness such as films, television, commercials and books had affected the development of their self-image. Books came out the clear winner among the different types of media, scoring the highest in the "helpful" category and the lowest in the "harmful" category. Stories about ordinary people living with mental illness and famous people who have lived with mental illness resonated even more clearly, with famous people coming out on top.
In response to this question, many people reacted with their discomfort about recent media coverage of the Arizona shooting, which some compared to other shootings that were related, rightly or wrongly, with mental illness.
"Sometimes people in the news/media seem so afraid, and generalize what one person with a severe mental illness does on to everyone else with a mental illness. It's just not fair."
There was an interesting phenomenon related to advertisements, which most people took to mean drug commercials, although a significant number of responses mentioned the Burger King "Crazy King" or a Geico commercial depicting a therapist as drill sergeant. Some people liked the drug commercials because they showed positive images of recovery and thus put the idea that mental illness is treatable before the public eye. Others disliked particular commercials or described the entire genre as "scary," "a downer" or "simplistic" or said they tended to make mental illness look "trendy," "cheesy" or use actors made to look overly unattractive.
"All the ads for medicine make me feel like I'm not a unique individual, but rather one of a herd of defective sheep."
Family, friends and therapy came out on top as being almost equally important in the development of participants' current self-image. Work, whether paid or unpaid, came next, followed by religion and spirituality.
The answers entered in the "other" category included peer support, sobriety, exercise, children, medication and pets/service animals.
One theme was learning from loss, such as a lost relationship or a breakdown.
"Going through a breakdown in which I truly saw (found) myself for the first time."
Some people seemed to want more support than they had available.
"[I have] no doctor, no family support other than my husband. It's really affected my relationship with my adult son. I've shut myself off from all my friends."
Others mentioned finding the right treatment professional and/or medication:
"Finally finding a doctor that doesn't attribute every single health issue that I have solely to my mental illness."
The responses to “What kinds of changes would you like to achieve in your self-image and/or how people perceive you?” were categorized by theme.
Moving beyond being defined by mental illness
Respondents most frequently wanted themselves or others to move beyond looking at their mental illness to seeing a whole person.
“I wish it wouldn’t be as big a part of my identity.”
“I want people to see me for me, a flawed person like any other but not a danger.”
“I would like people to perceive me as someone who has an illness, not…as the embodiment of an illness.”
The word confidence was the top quality people identified with before the onset of illness and it made a comeback in the words associated with current self-image.
"I want to feel confident again, to know that my decisions are mine and not my illness, I want to stop questioning me."
"I would like to see myself as a confident person that can handle most situations."
Better Understanding of Mental Illness
People identified some misconceptions about mental illness they wish would be dispelled by better public education.
"It's a disorder. When I'm sick I need to be cared for just like any other sick person."
Acceptance by Others
Responses with this theme touched on stigma from loved ones, coworkers and in the media, including the Arizona shooting. Compared to the statements about understanding, above, these responses dealt more with character and possibility.
I want people to see that I can still be a functioning member of society and I can still be good at my job."
"I don't want people to see me as someone who's not trying hard enough or as a lazy person."
Another area of growth for many people was in the territory of self-acceptance.
"More peace with how I am now versus how I was before, something I believe will increase as I deepen my sense of self."
"I want to accept the person that I am. I want to live and not hide anymore."
Respondents who didn't feel the need to make any changes
A significant number of respondents did not feel any need to change their self-image.
"I'm pretty happy with my self-image, due in great part to participation in various NAMI programs."
"I've learned to embrace my illness and see strengths in it. I have a strong sense of empathy and caring because of it."
Self-esteem came up as separate from self-acceptance of the illness, suggesting that there is a difference between accepting one's illness and feeling good about oneself. The fact that symptom management appeared further down the list might be related to the overall theme of separating oneself from one's illness—that is, the symptoms of respondents' illnesses are something they are less likely to associate with questions about identity. A few people wanted to improve self-image by disclosing their illness to others, while other participants wished to recapture a part of themselves that they felt was lost after the onset of their illness.
Finally, we asked which categories of people respondents had chosen to disclose their mental illness to. Nearly all had disclosed to family and friends, with a significantly lower number of people—less than half—who had disclosed to coworkers and/or employers falling next on the list. A small number of people had not disclosed their mental illness to anyone other than health professionals.
The survey, targeted towards people living with mental illness but open to anyone on the web, was promoted in NAMI's StigmaBuster newsletter, the NAMI e-Advocate newsletter and on the NAMI.org homepage from Jan. 26-Feb. 15, 2011. Of the almost 700 respondents, approximately 82 percent of were female and 17 percent were male. The age range is depicted in the graph to the right—22 percent were in their thirties, 24 percent were in their forties and 27 percent were in their fifties.