“I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress

Abstract

BACKGROUND

Diagnostic and treatment delay in depression are due to physician and patient factors. Patients vary in awareness of their depressive symptoms and ability to bring depression-related concerns to medical attention.

OBJECTIVE

To inform interventions to improve recognition and management of depression in primary care by understanding patients’ inner experiences prior to and during the process of seeking treatment.

DESIGN

Focus groups, analyzed qualitatively.

PARTICIPANTS

One hundred and sixteen adults (79% response) with personal or vicarious history of depression in Rochester NY, Austin TX and Sacramento CA. Neighborhood recruitment strategies achieved sociodemographic diversity.

APPROACH

Open-ended questions developed by a multidisciplinary team and refined in three pilot focus groups explored participants’ “lived experiences” of depression, depression-related beliefs, influences of significant others, and facilitators and barriers to care-seeking. Then, 12 focus groups stratified by gender and income were conducted, audio-recorded, and analyzed qualitatively using coding/editing methods.

MAIN RESULTS

Participants described three stages leading to engaging in care for depression — “knowing” (recognizing that something was wrong), “naming” (finding words to describe their distress) and “explaining” (seeking meaningful attributions). “Knowing” is influenced by patient personality and social attitudes. “Naming” is affected by incongruity between the personal experience of depression and its narrow clinical conceptualizations, colloquial use of the word depression, and stigma. “Explaining” is influenced by the media, socialization processes and social relations. Physical/medical explanations can appear to facilitate care-seeking, but may also have detrimental consequences. Other explanations (characterological, situational) are common, and can serve to either enhance or reduce blame of oneself or others.

CONCLUSIONS

To improve recognition of depression, primary care physicians should be alert to patients’ ill-defined distress and heterogeneous symptoms, help patients name their distress, and promote explanations that comport with patients’ lived experience, reduce blame and stigma, and facilitate care-seeking.

When patients explicitly request help for depression, primary care physicians (PCPs) generally initiate guideline-concordant care, including medication, referral for psychotherapy or appropriate follow-up.¹ However, not all people request help for depressive symptoms — and physicians often do not recognize patients’ emotional distress^2–4 — which might explain why one-fourth of people with major depression are undiagnosed⁵ and fewer than half receive treatment.^6,7

A critical but poorly understood step in depression care involves symptom recognition and disclosure. Even people who desire treatment may be unwilling or unable to disclose their depressive symptoms to physicians.⁸ Patient-level barriers to disclosure include lack of knowledge (about the symptoms or treatment), socio-cultural factors (e.g. stigmatization,^9–11 beliefs about help-seeking), psychological factors (e.g. difficulty articulating emotions), discomfort discussing personal issues,¹² and the belief that physicians are not interested in or not able to treat depression.¹³

Discordance between physician and patient beliefs may also hinder depression care.^14–20 When patients attribute depressive symptoms to problems of living or physical illness,^{14–16,21,22} physicians are more likely to overlook depression and pursue situational explanations or organic disease.^18,19 Unwillingness to seek care may result from discordance between patients’ treatment preferences (generally, psychosocial interventions) and their expectations about what their physicians will recommend (generally, medications).²⁰

To gain a deeper understanding of how people recognize their own depressive symptoms and bring them to the attention of their PCPs, we used focus groups to explore cognitive, relationship, and communication factors that affected recognition and disclosure of depressive symptoms.

METHODS

Focus groups were conducted with a diverse sample of people with personal and vicarious experience with depression; results from these groups informed the design of targeted and tailored media interventions to encourage depression care-seeking in primary care.

Study Sites & Participants

The institutional review boards at the three study sites (Rochester, New York; Austin, Texas; and Sacramento, California) approved the protocol. We purposively sampled participants to achieve maximum variation and representativeness by income, gender, and racial/ethnic background. In addition to on-line postings, we sent postcards, and posted flyers in public venues in Zip codes that reported median incomes closest to the 50th (middle-income) and 15th (low-income) percentiles.

Study participants were English-speaking men and women, aged 25–64, who reported a personal history of depression or experience with a close friend or relative with depression. Each participant received $35.

Data Collection

The team developed an initial set of guiding questions, based on theories of illness cognition,^{14–16,23–26} and behavior change (e.g. transtheoretical model, social cognitive theory),^27–30 and research on depression care-seeking.¹¹¹ These approaches propose that people are most likely to seek treatment if they are well-informed and psychologically minded, experience typical symptoms of depression and little stigma, and have confidence in the effectiveness of treatment, few concerns about side effects, adequate social support, and high self-efficacy. Open-ended questions prompted participants to disclose their “lived experiences” of depression, depression-related knowledge and beliefs, and facilitators and barriers to care-seeking. The questions had a pragmatic goal — to help design media interventions for those in pre-contemplative and contemplative stages of care-seeking starting with the initial experience of symptoms continuing through treatment.

Before each focus group, participants provided informed consent, and completed a questionnaire. Groups lasted 75–110 minutes, and were facilitated by 1–2 study investigators. A project coordinator took notes.

Based on pilot focus groups (balanced for gender and income) conducted at each site, we expanded our guiding questions to explore two areas: the time between the appearance of depressive symptoms and the first realization that something might be wrong, and the interactions among people with depressive symptoms, their close social contacts, and the health care system that influenced care-seeking (see Appendix).^31,32 Using the revised guiding questions, we conducted four additional focus groups per site, stratified by gender and income level (“low”, “middle”), in early 2008.

Data Analysis

Groups were digitally recorded, then transcribed. First, the entire multidisciplinary study team identified broad emergent coding categories based on iterative line-by-line review of 15 focus group transcripts. The codes were grouped into larger categories by consensus during regular meetings. Then, the primary coding team (DAP & CSC) reviewed the transcripts for accuracy while listening to the recordings and systematically coded all 15 transcripts using EthnoNotes software; they selected numerous illustrative quotes and identified each quote according to city, gender, and income group.

In the second phase, the data analysis team (RME, PRD, PB, JDB) refined codes pertaining to cognitive and communicative processes that hindered or enabled discussion of depression-related symptoms. They rechecked the transcripts, reviewed the codes and coded transcripts, refined definitions of the codes, defined sub-codes, searched for recurrent themes, generated hypotheses, and extracted representative quotes from the initial set that exemplified each sub-code. The team organized relevant codes and transcript segments into three themes (Table 1) and explored theoretical links among the codes and themes. Disconfirming data were used to modify themes and refine hypotheses. Co-investigators not involved in the initial phases of the analysis audited the results for consistency, clarity, and comprehensiveness (MPF, ABR, RLK). Data relating to gender, social and patient-physician relationship issues are reported elsewhere.^33,34

Table 1.

An Empirical Taxonomy of Patient Factors Influencing Depression Help-Seeking in Primary Care

Major category	Subcategory	Problem statement
Knowing	Not knowing	Lack of awareness that one’s experience constitutes a problem
	Becoming aware	Situations or factors that led to awareness that something might be wrong
	Social influences	Facilitators and barriers to awareness
Naming	The lived experience	Participants’ actual experiences of depressive symptoms, including perceptual distortions, metaphors of constriction, and social inhibition
	Problems with the word “depression”	Colloquial, personal and clinical understandings of the word depression.
	The value of naming	Effects of naming on care-seeking and self-image
	Formal assessment	The value and limitations of depression screening instruments
Finding meaningful explanations	Physical explanations	Depression is seen as a medical illness, requiring treatment
	Characterological explanations	Depression is seen as intrinsic to personality
	Situational explanations	Depression is seen as a response to current or past events

RESULTS

Study Participants

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 2).

Table 2.

Demographic Characteristics of Participants

	Participants (n = 116)
	No.	%
Respondent type
Personal Experience	56	48
Family member or friend	14	12
Both personal and family/friend	46	40
Sex
Male	51	44
Female	65	56
Age, years
25–45	54	47
46–64	61	53
Race/Ethnicity
White	70	60
African-American/Black	19	16
Hispanic	16	14
Other	11	10
Educational Attainment
Some high school	5	4
High school graduate/GED	18	15
Technical school/some college	38	33
College graduate	54	47
Annual household income (US Dollars)
>80,000	13	11
50,001–80,000	15	13
30,001–50,000	23	20
20,001–30,000	14	12
<=20,000	50	43
Regularly practice religion/participate in religious community	54	47
In general, would you say your health is...?a
Excellent	12	10
Very good or good	76	65
Fair or poor	28	24
Do you have any kind of health coverage...?
No	23	20
Yes	90	78
Do not know/not sure	3	2
Was there a time in the past 12 months you needed to see a doctor but could not do so because of costs?
No	73	63
Yes	42	36
Do not know/not sure	1	1
Is there a particular person or place that you usually go to when you are sick or need advice about your health?
No	16	14
Yes	100	86
During the past 12 months, did you think you needed help for emotional or mental health issues, such as feeling sad, anxious or nervous?
No	24	20
Yes	92	80
During the past 12 months, were you treated for emotional or mental health issues?
No	43	37
Yes	72	62
Have you ever had treatment for depression?
No	14	12
Yes (all treatments)	101	87
Yes, with medications	90	76
Yes, with counseling	98	84
How beneficial was the treatment you received?
Not at all beneficial	3	3
Somewhat beneficial	35	30
Beneficial	35	30
Not applicable	41	35
Do you know of any close friends or family members who were treated for emotional or mental health issues over the past 12 months?
No	35	30
Yes	79	68
How beneficial was the treatment they received?
Not at all beneficial	7	6
Somewhat beneficial	40	34
Beneficial	26	22
Not applicable	35	30
I would not want my employer to know I was getting professional help for an emotional problem.
Strongly agree or agree	74	64
Unsure	17	15
Disagree or strongly disagree	24	21
I would be embarrassed if my friends knew I was getting professional help for an emotional problem.
Strongly agree or agree	28	24
Unsure	29	25
Disagree or strongly disagree	59	50
If I had depression, my family would be disappointed with me.
Strongly agree or agree	24	21
Unsure	22	19
Disagree or strongly disagree	69	60

^aSome percentages do not add up to 100% due to rounding or non-response. Further information available from the authors

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 1).

Knowing

We first examined how people became aware that their experience of “depression” might represent something abnormal or undesirable (Text Box 1)

Text Box 1.

Knowing

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.

Naming

Once having recognized that something was “not right,” participants described difficulty naming their distress. Below, we discuss four aspects of naming (Text Box 2).

Text Box 2.

Naming

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.

Explaining

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 3). 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.

DISCUSSION

Our demographically and geographically diverse participants described three themes relevant to presenting depression-related symptoms to primary care physicians and engaging in care — “knowing,” “naming”, and “explaining.” Our findings also suggest ways in which theories of diagnostic delay, illness cognition and health behavior change can inform interventions to improve depression care.^25,28,29,36

Whereas research on diagnostic and treatment delay tends to emphasize physician factors (such as misattribution), our findings underscore the importance of patient-related delay.^25,36 For example, “not-knowing” can be seen as a type of appraisal delay. While “knowing” can promote care-seeking, sometimes patients come to “know” that something is awry during discussions with physicians about experiences that initially seem unrelated to depression, such as pain, fatigue, and a vague sense of “just not feeling right.”

“Naming” refers to how people find words to describe their distress. “Naming” is often a precondition for the contemplation phase of behavior change; conversely, not naming one’s distress as depression can contribute to “illness delay” — the temporal gap between deciding one is ill and seeking care. Many participants had difficulty naming their distress as depression because their experiences did not comport with their “common-sense” models of depression.²⁴ Nor were many of these experiences likely to have been considered depression symptoms by their physicians, who held different but narrow models that did not encompass the protean ways in which people experience depression. Expanding the public’s concept of depression and physicians’ ability to accommodate diverse experiences of depression may facilitate dialogues between patients and physicians and lead to earlier recognition.

The word “depression”– with its colloquial connotations and associations with immutable personality characteristics — presented multiple subtle issues. Participants found it less stigmatizing to say “I have depression” rather than “I am depressed,” just as men might refer to having erectile dysfunction rather than being impotent. Based on prior reports, we thought that older patients, Blacks, Latinos, and Asians would have more difficulty naming their distress as “depression;”³⁷ we found that naming was problematic for everyone. Standardized depression screening tools,³⁸ helped many “name” their depression, but some women found them unhelpful.

Meaningful explanations, our third theme, were strongly influenced by social relationships patients have with health care professionals, friend and family, and by the media.³¹ Arriving at an understanding of depression that comports with personal illness beliefs, exculpates (“not my fault’), instills hope (“treatment can work”), and empowers (“I can do it”] can promote movement from contemplation to action.^{23–25,27–30} But, not all explanations propel people along the path to care. The most motivating and destigmatizing explanations represented a balance between physical, characterological and situational attributions. While most participants ultimately preferred physical (e.g. chemical imbalance) to characterological attributions, they often recognized that “chemical imbalances” neglected the uniquely personal aspects of the depression experience — and devalued behavioral or psychosocial treatment options. Furthermore, participants felt that personality traits and social forces were important to consider in promoting recognition of depression. However, holding predominantly situational attributions, while defusing self-blame, often resulted in beliefs that changes in the social environment — not medical care — were necessary to improve their mood, functioning, and self-concept.

Our observations are relevant to both patient-physician communication and the development of clinical, public health, and media interventions to improve depression care. First, depression-related information should emphasize the diverse ways in which people experience depression. Second, common difficulties with the word “depression” should be addressed. Third, explanations for emotional distress should take into account individual vulnerability — due to personality, situational, social, and genetic factors — while being careful to avoid blame and emphasizing responsiveness to treatment. Fourth, physicians should not rely on symptom checklists exclusively to detect depression. Finally, discussions of depression-related concerns with PCPs should not require that the patient endorse a self-diagnosis of depression.

Several limitations should be noted. First, self-selected volunteers from urban areas — with prior psychotherapy and pharmacotherapy — present different views than undiagnosed people with depression presenting in primary care. Second, depression diagnoses were by self-report. Finally, focus groups cannot explore themes in as much depth as individual interviews and can foster collective thinking which reinforces some themes and avoids others.

CONCLUSIONS

A framework that considers the role of health systems, illness cognition, behavior change, and social influences can advance our understanding of how people come to know, name, and explain their depressive symptoms and seek care. To bring depressive symptoms to the attention of physicians, people must first become aware that their ill-defined, heterogeneous and (often) longstanding distress is not normal and warrants attention. While labeling their experience as “depression” is often helpful, in order to seek care, people also need meaningful explanations for their distress that comport with their lived experience, reduce blame, stigma, and shame and provide hope that interventions will help. Physicians, families, friends, and the media can prompt people who have depressive symptoms to seek care by adopting a multi-faceted understanding of the experience of depression from the patient’s perspective — and helping them find the words to bring their experiences and concerns to the attention of physician. In that way, a shared vision of the cause and treatment of depression can facilitate follow-through with a mutually-endorsed plan.

Appendix — Focus Group Guiding Questions

Table 3.

Focus Group Guiding Questions

Clinical stage	Guiding questions
Appearance of depressive symptoms	If you thought you were depressed, whom would you tell?When you think about depression, what comes to mind?
Perceived need for action	Some people might seek help for depression; other people might decide not to seek help. How would you (or someone else) know that you needed help for depression?
	What kinds of things do you think should be said to someone who was depressed and who you thought needed treatment?
Care-seeking	If you were feeling depressed, where would you go to seek care/get help?
	Where would you go to get help if you thought your family member or close friend was depressed? (If responses for self and other differ, probe for why)
	What kinds of things might make it difficult for people to get help/seek care?
	Tell me your thoughts about the average person’s ability or willingness to seek care for depression from the doctor who cares for their general health concerns. We will call this doctor the “main doctor.” How might these expectations impact your willingness to seek care?
Treatment	Let’s talk now about specific kinds of care for depression
	Please tell me how you feel about the usefulness of antidepressant medication for the treatment of depression
	Please tell me how you feel about the usefulness of counseling or psychotherapy for the treatment of depression
Other issues	Tell us about other issues that may be important to identifying and managing depression. Are there certain beliefs, values, or personal characteristics that are important?
	Tell me how your own beliefs, values, or personal characteristics might influence your interaction(s) with your main doctor. Are there things in addition to your own beliefs, values, or personal characteristics that make a difference in how your doctor should help you with depression?