One hundred eighty-three people responded to our recruitment efforts; 37 were unavailable or ineligible due to age or income. Among the 146 remaining volunteers, we were able to accommodate 116 (79%) participants into one of 15 scheduled focus groups (Table ).
Demographic Characteristics of Participants
Naming, Knowing and Explaining
Participants described three linked themes: their inner experiences of depression as they first recognized that something was wrong (“knowing”), sought to put a name on their distress (“naming”) and tried to make sense of their experiences (“explaining”) (Table ).
We first examined how people became aware that their experience of “depression” might represent something abnormal or undesirable (Text Box )
Not knowing Many participants reported not knowing that something was wrong — sometimes for years. One participant did not seek treatment because they “didn’t know there was anything wrong with me…” Another was “totally unaware” but, in retrospect could “pinpoint times even as a teenager that I obviously isolated myself.” Some were equally unaware, despite having had prior treatment for depression.
Several participants described how personality can influence knowing. Some who described themselves as “always dark,” “introspective”, and “always in a bad mood” had been so acclimated to being “gloomy” that it was difficult for them to appreciate their descent into depression. In contrast, self-described extraverts, unaccustomed to introspection or negative emotions, were not attuned to the nuances of their moods. They had difficulty reconciling a self-image as an “outgoing likeable person” with the experience of depression. Traits also made it more difficult for participants’ family members and friends to know they were depressed.
Becoming aware A surprisingly wide range of emotional and behavioral changes, physical symptoms, and perceptual distortions cued participants that something was wrong. Some described a “growing awareness;” others described sentinel events — hospitalization for substance abuse or “feeling totally out of control.” Many reported delays in seeking care, especially lower-income men. By normalizing their symptoms as “everyday life problems that many other people are going through” they delayed until their distress was extreme before seeking help.
Social influences Family members, friends or health professionals “pushed” some participants towards knowing. Others reported the opposite –friends and family seemed unable to notice or discuss depression, even suicidal statements. One man commented, “…you’re not looking for help and … there are people around that aren't recognizing it either.” Spending time with someone in the midst of depression did not facilitate recognition of depression in oneself; some individuals perceived their own distress as categorically distinct from the clinical depression of their friends or loved ones.
Once having recognized that something was “not right,” participants described difficulty naming their distress. Below, we discuss four aspects of naming (Text Box ).
The lived experience
Women, especially mid-income women, described more aspects of the depression experience than men. Participants’ experiences included symptoms (e.g., mood, interest, appetite, sleep, energy, slowing) typically considered to be diagnostic criteria for depression,35
as well as other domains: perceptual distortion, metaphors of constriction and social inhibition. Commonly, participants felt as if there were actually “haze,” “fog” or “shadows” that affected their ability to see clearly. They used metaphors, most commonly of enclosed spaces with no way out. One woman suggested that depression was “the monster” that “you can’t see” but “all of a sudden they put a name on it,” allowing it to “be fixed with …a pill or something.” Social inhibition was manifested by not answering the phone, not going out, not shaving, or making sarcastic or negative comments in social situations. Because patients did not name these experiences as “depression”, “[…asking], ‘Have you ever had depression?,’ probably isn’t the best [question] to use, because if you aren’t recognizing it at this point, you can say, ‘no.’”
Clinical and colloquial use of word “depression” Participants commented that the words “depressing,” “depressed”, and “depression,” are used colloquially (“So depressing that they didn’t win”), as a personality characteristic (“He’s always down and depressed”) and as a clinical name for an illness (“I am being treated for depression”). In addition, some participants’ narrow concept of depression interfered with recognition and acceptance of the diagnosis. In one focus group, mid-income women expressed confusion about why only one word, “depression,” was used to describe such diverse experiences, time courses, and treated disorders.
The value of naming Despite the problems with the word “depression”, participants did not dispute the value of naming their distress. Because they saw depression as “beyond sad,” participants searched for qualifiers to capture the differences between depression and ordinary sadness– it “spirals down,” “lasts longer,” and is “ “deeper,” “more painful,” and “irrational”. One low-income woman reflected a common perspective that “depression is more of a medical thing, where sadness could be, maybe, from tragedy.” Depression often involved “lacking control” over one’s own thinking.
Participants remarked that they often avoided the word “depression” with friends, family, and employers -- to avoid misunderstanding, stigmatization or over-burdening others. One low-income woman said, “…if I tell my family….I would say that I’m sad or I’m tired. I don’t say I’m depressed.” Many participants reported that a diagnosis of “depression” had a paradoxical result on their recovery. On the one hand, naming distress as “depression” led to improved access to medical treatment. Conversely, participants feared losing the very social support that could help them overcome depression — friends and family might avoid or blame them, and they might experience employment discrimination.
Questionnaires Completing a depression questionnaire played an important legitimizing and exculpating role for several participants; it helped attach words to experience, convince them of the gravity of the situation, that it was “real….not just in (their) head(s)”. One mid-income male participant noted that he used to “associate” depression with “crying, sadness…inability to kind of cope and…and get on with life” but that “didn’t describe (his) situation at all.” However, once he “sat down and …faced that questionnaire,” he realized that he was suffering from depression, despite his ability to “bring home a paycheck.” While men generally reported positive reactions to depression screening questionnaires, several women objected to the checklist quality of the questionnaires preferring a more personal approach.
Finding meaningful causal explanations for their distress allowed participants to organize their experience and engage with health care professionals. Three types of explanations were identified: physical, characterological, and situational (Text Box ). Most favored a single explanation, but some combined two or more types of explanations into a coherent narrative; more often, the link between the two (or more) explanations was not made. A few participants commented that they could find no meaningful explanation for their distress.
Text Box 3
Physical, Characterological and Situational Explanations for Depression
Physical explanations Physical explanations — depression as a “medical condition,” “disease,” or “illness” — were welcomed by those who initially had explanations that involved self-blame. Often, physical explanations were offered by health care professionals, family members, celebrities or advertisements, which the patient then adopted. Participants typically referred to “chemicals” being “imbalanced” or “blocked.” Others attributed depression to menopause, or lack of sexual vigor (“my mojo is gone…”). Whereas “chemical imbalance” typically reduced stigma and blame, genetic attributions left a more complex wake, which involved blame ascribed to a prior generation and to themselves for their role in transmission to future generations.
Characterological explanations Participants who felt that depression was “just part of me” or “I’ve been depressed since I was born” had more difficulty recognizing that they had a condition that needed treatment. They viewed their propensity to depression as a personal weakness, lower self-worth and a “shameful” lack of control. Participants who used the term “depressed” to describe a personality characteristic (rather than a treatable clinical condition) seemed less likely to seek care.
Situational explanations When depression was also viewed as a result of current stressors (e.g., accidents, deaths, family conflict) and past events, participants felt that social factors were to blame for their distress and that changing the social environment would be necessary to alleviate depressive symptoms. Often “several things… jumped on you at one time;” many were woven into life’s daily fabric — “wear[ing] yourself out taking care of everybody else” and “not being able to let go of a relationship.” One participant noted that “people or situations…have a negative effect on you” and one would be well-advised “to stay away from [these] influences.” Participants also referred to childhood trauma and neglect (e.g., insufficient “lap time”), and parental divorce, substance abuse and mental illness. One man attributed depression to conflicts between his emerging sexual orientation and his family’s religious beliefs. Others noted secretiveness of their early emotional environment leading to self-silencing and internalizing their distress.