“There’s Nothing Wrong With You”: Pain-Related Stigma in Adolescents With Chronic Pain

Abstract

Objective

Adolescents with chronic pain often experience symptom disbelief and social rejection by others secondary to “medically unexplained” symptoms. Although chronic pain is common in adolescents, limited research has conceptualized these social experiences as pain-related stigma in this population. The purpose of this study was to identify and describe pain-related stigma among adolescents with chronic pain and their parents using focus group methodology.

Methods

Five adolescent focus groups (N = 18; Age M = 15.33 years, SD = 1.28) and three parent focus groups (N = 9) were conducted. Directed content analysis was used to analyze focus group transcripts. Stigma categories were developed a priori (Felt Stigma, Anticipated Stigma, Internalized Stigma, Concealment, and Controllability) and new categories emerged during analysis. Two coders reached 87.16% agreement for all groups (adolescent group: 90.34%; Parent group: 79.55%) and consensus was achieved for discordant codes.

Results

Adolescents and their parents endorsed pain-related stigma across all social domains. Analyses revealed four main categories for both groups (a) Felt Stigma (subcategories: pain dismissal, faking or exaggerating, and mental health stigma), (b) Anticipated Stigma and Concealment, (c) Internalized Stigma, and (d) Sources of Pain-Related Stigma (subcategories: pain invisibility, lack of chronic pain knowledge, lack of understanding, and controllability).

Conclusions

Adolescents with chronic pain experience pain-related stigma from medical providers, school personnel, family members, and peers, which may have negative social and health implications. More research is needed to evaluate the link between pain-related stigma and health outcomes for adolescents with chronic pain. Clinical approaches targeting pain-related stigma are discussed.

Introduction

Health disparities, poor health outcomes, and avoidance of treatment have been documented among individuals with stigmatized health conditions (Hatzenbuehler et al., 2013; Kalichman et al., 2019; Major et al., 2018). Collectively, this evidence has resulted in broad recognition of stigma as a legitimate barrier interfering with patients’ health (Stangl et al., 2019; van Brakel, 2006). This is true not only for adults but also for youth. For example, stigma is experienced by obese and overweight children (Pont et al., 2017; Puhl & Heuer, 2010), those with HIV (Fielden et al., 2011; Jackson-Best & Edwards, 2018), epilepsy (MacLeod & Austin, 2003), and sickle cell disease (Martin et al., 2018; Wakefield et al., 2017). Across these pediatric populations, stigma is associated with adverse health-related outcomes, including avoidance of health care (Pont et al., 2017), treatment nonadherence (Rao, 2007), poorer health (Bennett et al., 2016; Kirabira et al., 2018; Pont et al., 2017), increased mood symptoms (Bennett et al., 2016; Martin et al., 2018), and lower quality of life (Martin et al., 2018). This evidence underscores the importance of addressing stigma in vulnerable pediatric populations.

Goffman (1963) first described stigma as societal devaluation of a specific attribute that an individual possesses. Stigma reflects a social construction that is characterized by a socially conferred mark considered ‘spoiled’ by others. Aligning with Goffman’s description of stigma, there is increasing evidence that “medically unexplained” pain is viewed as an undesirable attribute in individuals with chronic pain. The chronic pain conditions most vulnerable to this pain-related stigma include chronic musculoskeletal pain (i.e., fibromyalgia), headache, functional abdominal pain, and complex regional pain syndrome.

Recent evidence suggests that adults who have chronic pain conditions with less diagnostic certainty (e.g., fibromyalgia) report more stigma compared with those with pain conditions that have more diagnostic certainty, specifically rheumatoid arthritis (Van Alboom et al., 2021). Pain-related stigma has been deemed a public health priority in the 2016 National Pain Strategy (Interagency Pain Research Coordinating Committee, 2016) and has received increasing attention in adults with chronic pain (De Ruddere & Kenneth, 2016; Goldberg, 2017) due to evidence demonstrating pain disbelief by others (Holloway et al., 2007; Monsivais, 2013) and its negative health consequences (Newton et al., 2013; van Brakel, 2006). Studies have also documented increased stigma in pediatric providers toward pediatric pain patients who present with symptoms without clear medically based origins (Betsch et al., 2017) and pain disbelief among school nurses (Youssef et al., 2007). Likewise, youth with chronic pain conditions may be vulnerable to experiencing pain-related stigma, but research examining stigma experiences in this population is scarce.

While there has been little attention paid to stigma research with youth with chronic pain (Wakefield et al., 2018), there are several types and processes of stigma that are important to examine in order to adequately understand the lived experience of this population. Specifically, processes of felt stigma, internalized stigma, and anticipated stigma are key aspects of living with a stigmatized identity or condition that can negatively impact health (Major et al., 2018). Felt stigma occurs when an individual perceives that others devalue or negatively judge them because of their stigmatizing attribute. Internalized stigma occurs when the stigmatized individual applies negative societal beliefs about their stigmatizing attribute to themselves, engaging in self-blame and shame. Last, anticipated stigma refers to the expectation by an individual that others will devalue or judge them negatively in the future because of their stigmatizing attribute, which can lead to concealing symptoms (Quinn & Earnshaw, 2013).

In the absence of confirmed medical etiology, providers may be inclined to link a patient’s presenting complaints to psychological problems rather than physical problems (Lillrank, 2003). Adults with chronic pain have described experiencing this type of felt pain-related stigma by others (Goldberg, 2010; Holloway et al., 2007; Kool et al., 2009), and several studies indicate that youth with chronic pain report felt stigma through pain disbelief or lack of understanding by medical providers (Defenderfer et al., 2018; Dell’Api et al., 2007; Meldrum et al., 2009), as well as from school personnel, family members, and peers (Wakefield et al., 2018).

The invisibility of chronic pain pathology and associated symptoms presents considerable challenges for adolescents with chronic pain. When parents of youth with chronic pain experience diagnostic uncertainty and/or societal disbelief by others, they seek out further medical evaluations to justify their child’s pain condition (Jordan et al., 2007). Further research has demonstrated that the majority (66–77%) of children with chronic pain and their parents experienced diagnostic uncertainty following a multidisciplinary pain clinic evaluation (Tanna et al., 2020). This process may contribute, at least in part, to the $19.5 billion economic health care costs of adolescent chronic pain (Gaskin & Richard, 2012). Thus, felt stigma in youth with chronic pain and their families can have potentially significant emotional and financial costs.

Additionally, adolescents may experience discomfort or hesitancy in disclosing their illness status due to anticipated stigma; expecting negative reactions from others who will not believe their pain is real, or who will dismiss it (Barned et al., 2016; Kaushansky et al., 2017). These stigma processes can further reinforce social isolation and silent suffering (Camacho et al., 2020). Both felt and anticipated stigma have been associated with increased pain, poorer functioning, and worse psychological outcomes in youth with chronic pain (Laird et al., 2020). Self-disclosure of health status for youth with stigmatizing conditions has contributed to greater felt and internalized stigma and psychological distress (Mugo et al., 2021). Internalized stigma is not well-understood in youth with chronic pain. In adults with chronic pain, internalized stigma has been linked to negative self-esteem, lower pain self-efficacy, and greater pain catastrophizing (Waugh et al., 2014). Internalized stigma needs further exploration in youth with chronic pain.

Given the clear need to better understand the nature of stigma among youth with chronic pain, focus group methodology was used in this study to describe and characterize these experiences in adolescents with chronic pain and their parents, including sources of stigma, using a health-related stigma framework (Major et al., 2018). This study employs the same adolescent focus group data as that used in a previous study (Wakefield et al., 2021). That study was focused specifically on examining the use of concealment as a coping strategy for adolescents experiencing stigma. In this article, we discuss pain-related stigma more broadly and make an attempt to describe more fully the nature of pain-related stigma experiences. In addition, in this study we look at parent response to stigmatizing experience of their adolescent children. Parents were included in this study to determine if the adolescents’ experience of pain-related stigma was shared and validated by their parents.

Previous qualitative research in pediatric stigma has included parent perspectives (Austin et al., 2004). While the generation of ideas and in-depth information is a strength of individual interviews, focus groups can offer opportunities for more discussion of sensitive information (Guest et al., 2017) and better insights into sources of complex behaviors and motivation (Morgan & Krueger, 1993). This article thus addresses an important research gap by providing needed insights about the lived experience of pain-related stigma in adolescents with chronic pain and their parents.

Methods

Participants

The study was approved by the Institutional Review Board at Connecticut Children’s Medical Center. Patients, ages 12–17 years, with a documented diagnosis of chronic pain and their parents or legal guardian were approached in person during an outpatient clinic visit, or via phone within two weeks of their appointment at a tertiary pain management clinic at a midsize children’s hospital. Exclusion criteria included (a) non-English speaking adolescents and parents because the focus groups were conducted in English and (b) the presence of a comorbid chronic medical condition, such as juvenile rheumatoid arthritis or epilepsy, in order to reduce the potential stigma bias attributed to a different chronic health condition. Data reported in this article built upon the preliminary data of the first focus group that is reported elsewhere in a conceptual paper (Wakefield et al., 2018).

Of the 25 adolescents approached for this study, 7 patients were interested, but did not enroll due to scheduling conflicts with the focus group dates. As a result, 18 adolescents (Age M = 15.33 years, SD = 1.28, range = 12–17) and 9 of their parents consented and participated in the study. Of the adolescents who participated, 16 were female (1 male, 1 gender fluid). The majority of pain diagnoses of the adolescent sample included Amplified Musculoskeletal Pain Syndrome (66.11%), Abdominal Pain (33.33%), and Pain Amplification Syndrome (27.78%). Other diagnoses included Chest Pain (11.11%), Irritable Bowel Syndrome (11.11%), Complex Regional Pain Syndrome (5.56%) Fibromyalgia (5.56%), Neck Pain (5.56%), and Migraine (5.56%). The average duration of pain symptoms prior to treatment at the pain clinic was 23.28 months (SD = 15.16, range = 3–52). Additional demographic information is presented in Table  I. Participants self-reported race and ethnicity by completing a demographics questionnaire before participating in the focus group. Reporting of race and ethnicity in this study was mandated by the National Institutes of Health and is consistent with the Inclusion of Women, Minorities, and Children policy.

Table I.

Demographic Information for Adolescent Participants (N = 18)

Demographic characteristics	Number of participants	Percentage of sample
Race
White	14	77.78%
Black	1	5.56%
More than one race	2	11.11%
Other	1	5.56%
Ethnicity
Hispanic	5	27.78%
Not Hispanic	13	72.22%
Pain psychology treatment
No	10	55.56%
Yes	8	44.44%

A parent focus group was added to the study after the first two focus groups of different adolescents were conducted due to parent interest in providing feedback regarding the stigma that their child had experienced. Due to the potential bias that may have occurred when adolescents from the first two groups debriefed their parents about their experiences, we only approached parents of adolescents with chronic pain prospectively for the remaining three focus groups of the study. As a result, the parent sample consisted of nine parents: seven biological mothers (77.78%), one biological father (11.11%), and one maternal grandmother (11.11%). One parent who was approached for the study did not participate in the parent group due to social anxiety.

Procedure

Parental/legal guardian written informed consent and adolescent assent were obtained prior to the start of each focus group. Focus groups were conducted by a pediatric psychologist, pain physician, or research personnel trained in qualitative interviewing and experienced working with adolescents with chronic pain. A semistructured format was adopted. A question route was used as suggested by Krueger and Casey (2015) to provide a sequential question structure that introduced the concept of pain-related stigma. The parent focus groups were conducted separately from, and simultaneously with, the adolescent focus groups. The adolescents and parents were asked the same questions, but the parent questions focused on the pain-related stigma experience of their child as they observed it (see Table  II). The key focus group questions targeted the participants’ perspective of five primary areas: (a) initial diagnosis and treatment by medical providers; (b) reactions and level of support from teachers/school staff, family members, and peers; (c) perceptions of exclusion or being treated unfairly; (d) feelings of being ashamed because of pain; and (v) being teased or negatively judged because of pain. During the focus group, the interviewers probed participants for additional information to gain more insight into their experiences. Focus group facilitators met before and after each group to prepare for each group, process the information collected, review field notes, and adjust the interview probe guide to capture new information in future groups. The facilitators engaged in reflexive practice via processing group dynamics, interview contents, and their own role during the focus group interview.

Table II.

Focus Group Question Sequence for Parent Group

Question type	Focus group question
Introductory question	Let us go around the room and have everyone introduce themselves by saying a little bit about their child, such as what school they go to, grade they are in, where they experience pain and how long they have had pain?
Transition question	Has there been challenges you have experienced related to your child’s pain? Tell me more about them
Key question	Tell me about how your child’s chronic pain was diagnosed. What was your experience of how doctors initially reacted to your child’s pain?
Key question	How have teachers and school nurses reacted to your child’s pain? In what ways have they been supportive? In what ways have they not been supportive?
Key question	Tell me about how other students and friends reacted to your child’s pain? In what ways have they been supportive? In what ways have they not been supportive?
Key question	How do your parents and/or other members of your family support or do not support your child’s pain condition?
Key question	Tell me about any time your child has felt excluded or treated unfairly by others because of pain
Key question	Tell me about any time your child has been made to feel ashamed of your pain
Key question	Tell me about any time your child has been teased or judged negatively because of your pain
Ending question	Of all the topics we have discussed today, which of them would you say are most important to you and your child’s experience?
Ending Question	If you were to ask other parents about these experiences, what type of questions would you ask? How would you ask them?

Focus groups were conducted until adolescents with chronic pain presented no new information about pain-related stigma (i.e., theme saturation), which was assessed via a review of the transcripts following the third, fourth, and fifth focus groups. As a result, a total of eight focus groups were conducted (three parents, five adolescents) and each focus group consisted of three to four participants. The duration of focus groups ranged from 36 to 106 min. Each focus group session was recorded and transcribed and the transcriptions reviewed for accuracy. Given the goal of applying stigma theory to the experiences of adolescents with chronic pain, directed content analysis was used to code the data (Hsieh & Shannon, 2005). Thus, health-related stigma theory directed the development of a codebook for both groups that included categories developed a priori, specifically: Felt Stigma, Anticipated Stigma, Internalized Stigma, Concealment, and Controllability (Major et al., 2018). During the analysis, text that did not fit into a predetermined category was identified and analyzed later to determine if it constituted a new category or was a subcategory of an existing code. The initial coding scheme was revised and redefined during coding (Hsieh & Shannon, 2005). The transcripts were reviewed by two coders using the codebook who revisited the transcripts frequently to validate that the codes and categories were reflective of the data. The coders met following the coding of each focus group to evaluate reliability of the stigma codes and identify new content areas. Using the stigma codebook, the two coders obtained 90.34% agreement for the adolescent group and 79.55% for the parent groups with a combined 87.16% agreement for all groups. Any discordant code was discussed by the coders and consensus was obtained for all codes.

Results

The analyses demonstrated that pain-related stigma experiences were reported by all adolescent participants with chronic pain as well as their parents. Both adolescents and their parents described pain-related experiences of stigma across all social domains (i.e., medical providers, school personnel, family members, and peers). While the question route for the focus groups led with questions about initial reactions to pain, and more generally about support and lack of support by others, participants almost immediately described pain-related stigma experiences. Four main categories emerged from the directed content analyses: (a) Felt Stigma, (b) Anticipated Stigma, (c) Internalized Stigma, and (d) Sources of Pain-Related Stigma (see Table  III for definitions of each theme and category).

Table III.

Focus Group Categories

Name	Definition
Felt stigma	Perception that someone was devaluing or treating them unfairly due to their pain
Dismissal	Perception that someone was minimizing or dismissing their pain
Faking or exaggerating	Perception that someone thought they are exaggerating or making up their pain
Mental health stigma	When someone blamed pain all on mental health problems or stress
Anticipated stigma	Belief that participants will be negatively judged in the future because of their pain
Concealability	When participants actively kept pain symptoms from other to avoid stigma
Internalized stigma	When participants adopt negative societal beliefs and stereotypes, and engage in self-blame of pain
Sources of stigma
Invisibility	When the lack of disease visibility or medical evidence contributed to disbelief of pain
Lack of pain education	Perception that stigma stems from a lack of knowledge about chronic pain from expected people (i.e., doctors and school nurses)
Not understanding	When someone did not understand when participants presented or discussed their pain
Controllability	Perception that participants were to be at fault or is blamed for their pain

Felt Stigma

The most frequently endorsed pain-related stigma category was Felt Stigma. A focus group response was coded as Felt Stigma when the adolescent with chronic pain or the parent indicated that the adolescent was devalued due to their pain symptoms. All adolescent and parent participants described this form of stigma throughout the focus groups. There were three characteristics of Felt Stigma that emerged: pain dismissal, faking or exaggerating, and mental health stigma.

Pain Dismissal

A response was coded as pain dismissal when an adolescent described perceiving someone minimizing or dismissing their pain. This form of stigma often occurred when describing interactions with medical providers but was also experienced with school personnel, family, and peers. For example, one 16-year-old Hispanic female participant stated:

Initially, when doctors, they would just say, “Oh, it’s nothing. It’ll go away. There’s nothing wrong with you.” Like and then I would like—I know it’s happening. I know it’s not nothing and then they don’t do anything to take care of it and the same thing with my stomach, and then in the long run it gets worse and then they’re like, “Oh, okay, I guess it’s something.” So that I found that very frustrating, that they’re supposed to be doctors, but like they treat you different just because you’re not bleeding out of your ears or something.

Pain dismissal from medical providers, including statements such as “just growing pains” or “it’ll go away,” was commonly reported. Parents also described pain dismissal from school nurses. One mother of a 14-year-old White gender fluid adolescent shared: “The nurses frequently send [her] away; “You don't have a fever, go back to class.”

Pain dismissal was also described when others seemed surprised that someone their age could have chronic pain. For example, one 16-year-old Hispanic adolescent stated: “[peers] kind of make us like—you know you can tell someone, but they’ll be like, ‘You’re too young to even have pain’.” This concept was also described in the context of a medical provider by a 14-year-old White female participant: “I think because I was so young it was like hard to believe that I had the pain at this age um, so they didn’t take it very seriously.”

Faking or Exaggerating

Felt Stigma was described not only in pain dismissal, but when others perceived that adolescents with chronic pain were faking or exaggerating their pain for attention. While this category was described in the context of medical providers, more experiences were endorsed within the school and family environments. For example, one 16-year-old Hispanic female participant shared an experience with her school teacher, stating: “I have to handwrite it. I’m like, ‘It hurts to write’. So they tell me, ‘You’re lying’.” A different 16-year-old White female adolescent also described her experiences in the school environment as:

I would get yelled at a lot because I always asked to go to the nurse’s office and just go to the bathroom to just walk around, just chill out for a minute. Um they would always just yell at me and say like, “Sit down. You need to get to class. Stop faking it,” and stuff like that and meetings they would always like just pound, pound on me and like, “You’re just faking it.”

Parents also observed this experience in school. For example, a mother of 15-year-old White male participant shared that her son stated that his school nurses believed he was “looking for an excuse to get out of class.”

Many participants described perceptions of faking their symptoms or exaggerating within their family. The majority of participants had these experiences from extended family members, but there were a few who described them with a parent. To illustrate this experience, a 15-year-old Hispanic female participant stated, “It was more like I was judged by pretty much everyone, even my family and my siblings. My grandmother thought I was just faking it, and pretty much everyone thought that I’m doing it for attention, that it's not real.” Her mother corroborated this experience in the parent focus group by stating: “We actually stopped talking to grandma, my mom, she believed it was fake and other family events had happened, so we pretty much are estranged from the rest of the family.” The perceptions that the adolescent with chronic pain was faking led to strained relationships within this family.

Parents also acknowledged difficulty with how to support their adolescent with chronic pain. They shared shame and guilt about not believing them. The father of a 16-year-old White female participant stated: “But a lot of it, even I think on my part and her mom’s and different school people, are almost, ‘Will it exist or not until we have an actual diagnosis? Like, why is she staying out of school? You know?’” Many parents described questioning their child’s medical diagnosis and considering the possible secondary gains for the child of not engaging in school or household chores, but then feeling guilty about this confusion.

Mental Health Stigma

Another aspect of Felt Stigma was the perception that chronic pain symptoms were entirely psychological in nature. Adolescents and their parents discussed frequent mental health stigma from health care personnel while seeking medical evaluation for their chronic pain, as well as from school personnel and family members. One 15-year-old Hispanic female shared that her sibling suddenly died 2 years earlier when she began having worsened pain symptoms and stated: “it's just because like my brother happened, just because that happened, they blame it on that. A lot of doctors didn't believe me.” A mother of a 12-year-old White female also shared examples of mental health stigma from medical providers: “I have had some that have said, you know, ‘Maybe she just needs a psychiatrist. Maybe it's just something that's just in her head, kids tend to make -’. They'll say, ‘Well, just stress maybe. She's stressed with things around her’.”

This type of Felt Stigma was also experienced in the school environment. One 12-year-old White female participant stated, “I've always had chronic pains as long as I can remember and teachers would kind of look at me and be like, ‘Oh you're a hypochondriac,’ which I can't be the only one else who's heard the word hypochondriac multiple times.” The other participants of the focus group indicated that they had had similar experiences.

Anticipated Stigma and Concealment

Adolescents with chronic pain also anticipated that others would devalue or negatively judge them in the future because of their chronic pain. This Anticipated Stigma was reported by most adolescent participants and was shared most frequently within the school environment. The anticipated stigma was typically described in the context of concealing chronic pain symptoms For example, a 14-year-old White gender fluid participant (prefers she/her pronouns) stated:

I don't tell anyone in my school about my pain, except like my certain friend and because I just don't like - even walking to the nurse's office, it would hurt me. It hurts like walking upstairs it hurts, so I just don't want to go there and they not believe me. So I usually just like until I get home, I tell my mom about it but not in school at all.

This participant described the perception that her school nurse would not believe her report of pain, which led to her avoidance of the nurse in school and to her concealing her symptoms until she returned home.

Parents often described that their child was not open to disclosing their chronic pain to many people or would “pretend it’s not there,” with the exception of a close friend or supportive family member. For example, a grandmother of a 17-year-old White female explained:

She wouldn't talk to nobody. And once somebody asked her a few questions, she was threatened by him, she goes, no, I'm not crazy, leave me alone. So she always was guarded, then she didn't want to, she wouldn't talk to you.

The majority of adolescent participants and some of their parents discussed concealment as a way of avoiding the stigma responses from others.

Internalized Stigma

When adolescents with chronic pain or their parents described an incident in which the adolescent adopted the stigma beliefs of others, engaged in self-blame, and/or felt ashamed or embarrassed about their chronic pain, it was considered an example of internalized stigma. This form of stigma was described in every focus group, but not by all participants. For example, a 16-year-old Hispanic female participant shared, “I like blame myself and feel ashamed about it sometimes… Just because the doctors say it’s nothing so you’re like okay, it’s nothing. So you’re just like you know how mind over matter? So you’ll try to say it’s nothing.” There were fewer endorsements of internalized stigma than felt or anticipated stigma, but some participants did describe feeling ashamed or embarrassed by their chronic pain. For example, a 12-year-old White female participant stated:

I feel ashamed [when] I need the disabled stall or disabled toilets because I always feel weird saying I am - I think fibromyalgia counts disability, especially disability like they kind of count. So I feel weird saying disabled because it's like I'm not missing a limb. But if my friend came to me and said, “I'm in this much pain,” I'm like, “Yeah, you're disabled.” Whenever I do it, it's always like awkward. I'm like, “I don't know, do I count?”

This participant describes an internal conflict about whether she has a debilitating disease that justifies the use of medical accommodations, which indicates internalized stigma.

The parent group also identified observations of internalizing stigma and their teens feeling embarrassment or shame about their chronic pain. The grandmother quoted also described her 17-year-old granddaughter, telling her: “this is going to make me crazy. I'm not going to be taking this. There's nothing wrong with me.” The description from the grandmother indicated that the child had begun internalizing the pain dismissal by others.

Sources of Pain-Related Stigma

Both adolescent and parent participants provided information about reasons for the stigma they experienced. Pain-related stigma was experienced across all social domains (i.e., medical providers, school personnel, family members, and peers). The categories that emerged from this theme were: (a) pain invisibility, (b) lack of chronic pain knowledge, (c) lack of understanding, and (d) controllability.

Pain Invisibility

All participants and caregivers reported that the invisibility of chronic pain symptoms contributed to pain-related stigma by others. Many participants and their caregivers described the invisibility of pain being problematic in the initial diagnosis of their chronic pain. For example, a 15-year-old biracial female participant described:

I was like always admitted to the emergency room multiple times. Like multiple times a month I’d always be in the emergency room. Had a severe headache or stomach ache was terrible or – I don’t know – something like that. They’d just go there, and they’d be like, “Nothing is wrong with you.”

This participant described medical providers not believing her pain in the emergency room setting due to negative medical findings. Caregivers also described this experience in the school setting, as evidenced by the mother of a 15-year-old White female participant who stated: “my daughter wrote a paper on invisible sickness. You know, because her English teacher last year was kind of—didn’t believe it.” The invisibility of chronic pain was the most frequently described source of pain-related stigma, contributing to diagnostic uncertainty and lack of understanding and support from others.

Lack of Chronic Pain Knowledge

Adolescents with chronic pain and their caregivers described difficulties with people they expected to have advanced medical knowledge who did not understand chronic pain diagnoses. The majority of these experiences occurred with medical providers, but some were described in the context of school nurses. For example, one 15-year-old White female stated, “I wasn't so much frustrated at the doctors as I was at the fact that it wasn't being figured out, because it's like if I couldn't put a finger on it, who says anyone else can?” This participant highlighted the challenges with the diagnostic uncertainty that stems from the lack of chronic pain education. Another 17-year-old White participant who described great frustration with medical provider stated, “I don’t like doctors. I think doctors are disrespectful… they can’t understand it because they don’t feel it, so they don’t treat it because they don’t know what it is.”

Regarding school nurses, a mother of a 14-year-old White gender fluid participant stated:

A lot of times, the nurse just doesn't know what to do. Then I've eventually gotten on phone calls with the nurse that's just like, “I don't know what to do anymore, can you just come get her?” or “Do you wanna just come and get her?” Because they don't really—like, “She's here again. She's here in the office again. She's here.”

Each of these examples demonstrates that adolescents with chronic pain and their caregivers experience a lack of chronic pain knowledge from physicians and school nurses. The lack of chronic pain knowledge or education by medical providers contributed to the experiences of pain-related stigma.

Lack of Understanding

There were many occasions when participants and their caregivers described others not understanding or willing to put in the effort to understand the chronic pain condition of the participants. This category differs from the lack of chronic pain knowledge because it is not in the context of medical providers, who are expected to have knowledge about chronic pain. These experiences mostly occurred among school teachers, family members, and peers. One 15-year-old White female participant stated: “I told this one teacher at the beginning because he like got really pissed at me, really fast, so I just told him and he again, he didn't really care or understand.” A 14-year-old Hispanic female participant also shared about peers:

I’ll be fine one minute and then the next I’m in pain um, so like they like don’t really understand how it works, um don’t understand why I don’t come to school. You know I mean they just ask a bunch of questions and like I just know – have all the answers. It’s hard to deal with it.

The lack of understanding about chronic pain in adolescents by school teachers and peers contributed to the experience of pain-related stigma. Both participants and their caregivers described that some family and friends expressed more understanding than others. For example, a mother of a 15-year-old White female participant stated: “With my family, I had to explain everything, and I’ve explained it many a times. More than once which is really good for [my child]…And sometimes they don’t understand it, but sometimes they do.” Therefore, there can be varying experiences in understanding the experience of adolescent chronic pain in the family and among friends.

Controllability

Controllability refers to the belief by others that chronic pain is within the control of the adolescent and, therefore, the adolescent is in pain because they are not doing enough to change their symptoms or experience. Attributions of controllability were described by a few participants, though not commonly shared by all participants. An example of controllability was described by a 16-year-old White female participant, who reported that her pediatrician assumed that if she was more active and not “lazy” she would not experience movement difficulties with her chronic pain. She stated:

I was having a PPT meeting at school and they were like, “Oh, she can’t have an elevator pass or whatever.” So they called my pediatrician and she was like, “Oh, no. She doesn’t need an elevator pass. She just needs to move around more. These kids are lazy these days.”

Controllability beliefs also occurred from teachers in the school setting. As stated by a 14-year-old biracial female participant who shared an experience within her physical education class:

Well, my gym teacher was pretty jerky about it. Um with modified gym, she’s having me fill out pamphlets written by someone who clearly didn’t know what they were talking about, and they all have the common theme of if you eat healthy and drink water, you won’t have chronic pain.

These controllability beliefs highlight assumptions that youth can prevent their chronic pain through personal behaviors of nutrition, hydration, and physical activity. These beliefs from doctors and educators contributed to reduced support of these participants at school.

Discussion

Pain-related stigma is a relevant and salient experience for adolescents with chronic pain that may have significant implications for health outcomes. Using a health-related stigma framework within a qualitative research design, our findings demonstrate the extensive nature of these stigma experiences for adolescents with chronic pain and their parents across different social domains. Based on these findings, stigma appears to be an appropriate framework to use when conceptualizing and studying the lived experiences of adolescents with chronic pain. The consistency in content between adolescents with chronic pain and their parents further increases validation of the stigma categories observed in this study. Previous qualitative research has begun to capture some of these experiences from children and adolescents with chronic pain (Meldrum et al., 2009). Other studies have supported the notion of pain dismissal (Defenderfer et al., 2018; Igler et al., 2020), and of pain invisibility in the context of these experiences. These results have not been considered in the context of stigma, however. Thus, findings from this study provide initial evidence to better identify and label these negative social experiences for adolescents with chronic pain, and can inform further research to allow us to better understand the links between stigma and health outcomes in this population.

Whereas stigmatizing experiences reported by our adolescent sample aligned with a priori stigma categories, three different subclassifications of felt stigma emerged from this study and warrant further consideration. Namely, adolescents with chronic pain frequently reported that others minimized their pain or believed that they were faking or exaggerating their pain symptoms, similar to previous qualitative research (Carter, 2002; Defenderfer et al., 2018; Meldrum et al., 2009), or that their pain symptoms could be explained by a mental health condition (mental health stigma). Furthermore, adolescents reported these experiences of felt stigma from medical providers, school personnel, peers, and some family members.

Mental health stigma complicates the experience of chronic pain for adolescents when medical providers describe their chronic pain as being “all in their head.” The perception that chronic pain is psychogenic in nature has been described in previous qualitative studies with youth with chronic pain (Defenderfer et al., 2018). Our findings show that adolescents with both chronic pain and premorbid or co-occurring mental health disorders were particularly vulnerable to this felt stigma experience, which was an unexpected finding, and may have significant contributions to pain-related stigma due to the high prevalence of comorbid chronic pain and mental health disorders (Campo et al., 2002; Coffelt et al., 2013; Konijnenberg et al., 2006). The focus on mental health diagnoses and treatment alone without acknowledgment of the other contributing factors or targets for intervention not only leads to pain-related stigma, but underappreciates the need for multi-modal treatment for chronic pain (Liossi & Howard, 2016; Nelson & Coakley, 2018). Future research should determine the prevalence of the overlap between mental health and pain-related stigma in medical providers toward adolescents with chronic pain and how it may lead to greater delays in diagnosis and treatment.

For adolescents with chronic pain, the experience of felt stigma within multiple social contexts may further increase anticipated and internalized stigma. For example, it is likely that an adolescent with chronic pain who experiences significant felt stigma would then expect to be stigmatized again in the future (anticipated stigma) and may engage in self-blame (internalized stigma) in response to others’ assumptions that they are faking or exaggerating pain. More research is needed to understand the intersectionality and directionality of these processes, and their collective impact on health outcomes. Laird et al. (2020) evaluated felt stigma and concealment in adolescents with functional abdominal pain and demonstrated that both were associated with mood and pain outcomes and that felt stigma alone was related to mental health care utilization. Future research should focus on delineating these stigma processes and how each process impacts psychological and physical health indices within pediatric chronic pain populations.

The majority of adolescents with chronic pain in this study anticipated negative reactions by others and tended to conceal their chronic pain, consistent with previous research (Defenderfer et al., 2018; Meldrum et al., 2009). Concealment has also been observed in other adolescent chronic illness populations (Kaushansky et al., 2017) and individuals with concealable stigma identities, such as mental health disorders (Quinn & Earnshaw, 2013). While concealment may be beneficial in avoiding stigma experiences from others, it can reinforce social isolation. Youth with chronic pain already experience social isolation and bullying by peers (Skarstein et al., 2020) that can lead to negative school and health outcomes (Forgeron et al., 2010). At the patient-level, antistigma interventions for individuals with stigmatizing health conditions, such as epilepsy, have targeted coping, self-esteem, self-management, internalized stigma, peer, and family support (Chakraborty et al., 2021). Clinical implications include psychological interventions directed at reducing internalized stigma and enhancing social relationships between adolescents with chronic pain and their friends and family, in order to reduce the health-related impact of social isolation.

The sources of pain-related stigma described by our adolescent and parent sample reveal new insights about pain-related stigma and can inform potential areas of intervention. Similar to previous qualitative research (Meldrum et al., 2009), participants in this study often talked about pain-related stigma stemming from a lack of understanding or chronic pain knowledge by medical providers, school nurses/teachers, peers, and family members. Parents, in particular, can be impacted by the distress of witnessing pain in their child and the lack of understanding of its etiology (Neville et al., 2019), and parent stigma can impact health outcomes of their youth with chronic illness (Baudino et al., 2021). This study also showed that parents admitted to their own difficulties believing their child without an “actual medical diagnosis.” Pediatric psychologists are well-suited to provide family-based interventions, as family cohesion is a protective factor against the impact of stigma on quality of life (Mendes et al., 2017). They can also promote chronic pain education and advocate for the medical needs of adolescents with chronic pain, particularly within medical and school environments.

The findings of our study support the need for antistigma interventions for adolescents with chronic pain across multiple social domains, particularly in the context of medical care and school settings. To date, most stigma-reduction efforts have focused on reducing stigma toward individuals with mental health conditions. A recent review of antistigma interventions aiming to improve attitudes toward people with mental health conditions by health care providers found that the most effective interventions included components of knowledge and skills building in combination with social contact with the stigmatized population (Carrara et al., 2020). Social contact with stigmatized individuals is considered to be an important feature in reducing stigma attitudes toward a stigmatized group (Carrara et al., 2020). These social interactions can increase comfort and confidence when engaging with individuals with mental health conditions, improve social acceptance, and reduce prejudice among health care providers (Stuart et al., 2014). Pediatric psychologists will be instrumental in the development and implementation of antistigma interventions for youth with chronic pain, particularly if they have opportunities to apply their knowledge of biopsychosocial aspects of chronic pain and facilitate social interactions and communication with patients who feel stigmatized. It may also be helpful for antistigma interventions to address potential implicit bias in health care providers within the context of stigma (Sukhera et al., 2020), though research is first needed to determine the role of implicit bias in the context of pain-related stigma in youth with chronic pain.

There are several limitations to this study that need to be considered. Our sample consisted of mostly white, non-Hispanic female adolescents, which limits the generalizability of our findings across diverse chronic pain populations. Future pain-related stigma research should focus on recruiting greater gender and racial/ethnic diversity in order to determine differences in experiences. Information on parental age, demographics, and race/ethnicity was not collected, which limits the ability to make generalizations from the parent sample. Additionally, there was lower interrater reliability for the parent group compared with the adolescent group, which reflected coding challenges in detecting parental stigma perceptions of their child. Due to the cross-sectional, qualitative nature of the study, pain-related stigma could not be directly linked to health outcomes. The findings are also limited to the experience of adolescents with chronic pain who have received a formal diagnosis of chronic pain from a multidisciplinary pain clinic. These limitations highlight the need for more comprehensive work to clarify the nature of health-related stigma experienced by diverse populations of youth with chronic pain and their families.

The field of pain-related stigma in youth with chronic pain remains in its infancy, and there is much still to learn about the nature, prevalence, and consequences of pain-related stigma among youth. This study applies a health-related stigma framework to lived experiences of adolescents with chronic pain, highlighting social suffering, and possible sources of stigma, such as pain invisibility and lack of chronic pain knowledge of medical providers and school nurses. These findings can inform future research, and calls attention to the need develop pain-related stigma measures and interventions to reduce pain-related stigma in adolescents with chronic pain.