When Family Don’t Acknowledge: A Hermeneutic Study of the Experience of Kinship Stigma in Community-Dwelling People With Inflammatory Bowel Disease

Inflammatory Bowel Disease

Crohn’s disease (CD) and ulcerative colitis (UC) are the most commonly occurring chronic inflammatory relapsing and remitting conditions affecting the gut. Along with Crohn’s Colitis (CC) and Proctitis, these are collectively termed inflammatory bowel disease (IBD). CD affects the intestinal tract anywhere between mouth and anus, and is characterized by healthy gut wall interspersed with regions of affected tissue (skip lesions). It can be inflammatory, stricturing, or penetrating (fistulizing); around 70% of patients will require surgery at least once in their life (Gomollón et al., 2017). UC is confined to the colon and is inflammatory only; around 30% will require surgery at least once (Magro et al., 2017). Both diseases produce symptoms of pain, illness-related anorexia, dehydration, and urgency. The risk of fecal incontinence (FI) is high, and prevalence may reach 74% (Norton, Dibley, & Bassett, 2013) compared with between 2% and 11% in the non-IBD population (Bharucha et al., 2005; Chien & Bradway, 2010).

Periods of remission and relapse, and symptoms, are unpredictable. Treatment aims to achieve medical remission, with recourse to surgical intervention where necessary (Gomollón et al., 2017; Magro et al., 2017). Diagnosis is often made in the late teens to early 20s with a further peak during the fifth decade; men and women are equally affected. Current estimates suggest that between 261,000 and 600,000 people in the United Kingdom, and between 1.3 and 1.6 million people in the United States, have IBD. There is no known cure.

Goffman and Stigma Theory

In his seminal work, Goffman (1963) defined stigma as the consequence of “an attribute that is deeply discrediting” (p. 13), a characteristic that somehow marks a person as unwelcomingly different from the norm within a social setting, and devalues them in the eyes of others (Dovidio, Major, & Crocker, 2000). Goffman (cited in Page, 1984, p. 5) identified that stigma could result from blemishes of character (conduct), tribe (culture), or abominations of the body (physical imperfections), thus, proposing that behavior, ethnicity, and illness or disability could be stigmatizing. In health-related stigma, conduct may be represented by symptoms (disease behavior), and physical imperfections by (chronic) illness and/or disability. Stigma theorists have since explored the many ways in which illness and disability can be stigmatizing, revealing how the affected person is separated by their difference from the normal, well social majority (Joachim & Acorn, 2000b; Link & Phelan, 2010; Scambler, 2006).

IBD can be stigmatizing because disease relapse (or flare) is unpredictable, perhaps disrupting social behavior and leading others to perceive the person is unreliable when they have to change plans at short notice. Symptoms of foul-smelling wind and fecal incontinence, and urgency (needing to open bowels quickly) or frequency (needing to open bowels often) challenge sociocultural rules about bowel control and containment (Elias, 2000; Smith, 2007). Furthermore, chronic illness is often mistrusted and misunderstood especially when it is unfamiliar to colleagues, peers, and the general public.

Goffman (1963) further proposed a person could be discredited, or discreditable. A discredited person’s “other” status is visible, their difference being instantly apparent. Having lost the social credit that accompanies majority membership, they are “discredited.” In contrast, a discreditable person’s “other” status is concealed, but the hidden secret can unpredictably expose them, risking loss of the social credit assigned to “being normal.” A person with epilepsy, for example, may be judged by others to be a normal person like them until a seizure occurs in public. IBD can mark people as discreditable—they may look well and fit the majority perception of a healthy adult but their condition can relapse at any time. This, and bowel urgency and/or incontinence, can unpredictably reveal their true illness-identity to others.

Stigma is also relational (Goffman, 1963; Link & Phelan, 2001; Scambler, 2003)—whether it arises and is directed toward an individual who carries a feature of difference, or a mark, depends on the reactions of others toward the mark, rather than what the mark is. This relational aspect explains why a person may feel stigmatized in some social situations but not in others, even though the mark she or he carries is permanent (Dovidio et al., 2000).

Goffman also asserted that the marked person could be protected to some degree from social judgment, by association with “The Own and The Wise” (Goffman, 1963, p. 31), those in the know about a discrediting or discreditable mark. The Own are the sympathetic others who share the stigma, have experience of it, and accept the marked person for who he or she is. In this case, The Own are other people with IBD, with or without related incontinence. The Wise, however, are those who do not bear the stigmatizing mark, but

. . . whose special situation has made them intimately privy to the secret life of the stigmatised individual and sympathetic with it . . . wise persons are the marginal men before whom the individual with a fault need feel no shame nor exert self-control, knowing that in spite of his failing he will be seen as an ordinary other. (Goffman, 1963, p. 41)

For those with IBD, their intimate, nearest, and closest family, as well as specialist IBD health care staff, may be expected to be The Wise and bestow all the benefits described above. The kinship stigma presented and discussed in this article may result when family who are believed to be The Wise show themselves instead to stigmatize so that there is shame, there is need for self-control, and because of his or her failing, the marked person is seen as an abnormal Other.

Stigma and discrimination have blurred boundaries and may often be seen to overlap (Link & Phelan, 2001). Discrimination is an active, overt attempt by one person or group to treat another person or group in a different, and less favorable way, for example, preventing access to buildings for people with physical disabilities. Stigma, in contrast, is a perception, so that the experiencing person may perceive they are being, or feel they are being treated, as “less than” when that may not be the case. Discrimination can, of course, also lead to feelings of stigma. While there are perceptual similarities between stigma and discrimination . . . a person may also perceive they are being discriminated against without evidence of this, the feeling associated with that discrimination is often one of stigmatization. Stuber, Meyer, and Link (2008) suggest that discrimination is concerned with social processes that are driven by exploitation and domination, while stigma focuses on processes “driven by enforcement of social norms and disease avoidance.”

The Potential for Stigma in IBD

IBD and related bowel incontinence may be deeply discrediting due to associations with dirt and poor control. Humans may be programmed to avoid biological threat, treating anything that challenges health and/or social integrity as “other” (Curtis, Aunger, & Rabie, 2004; Curtis & Biran, 2001; Weinberg & Williams, 2005), eliciting a disgust response as a self-protective mechanism (W. Miller, 1997; S. Miller 2014). Worldwide, feces are considered the most disgusting type of dirt (Curtis & Biran, 2001; Tsagkamilis, 1999); excrement must be contained to conform to social hygiene and privacy rules (Elias, 2000; Smith, 2007); and bowels are taboo (Drennan, Cole, & Iliffe, 2011; Norton & Dibley, 2012). Those who cannot conform may be stigmatized because they “interfere with [the] preferred socialization lessons and processes” of wider society (Neuberg, Smith, & Asher, 2000, p. 45).

People with IBD often suffer bowel control problems during active disease, and sometimes during remission, making them vulnerable to feelings of shame and embarrassment that are often synonymous with stigma. Recent qualitative research has revealed stigma within the illness experience of people with IBD (Dibley & Norton, 2013; Frohlich, 2014; Thompson, 2013) and identified negative attitudes coming from family members—kinship stigma—as part of that experience (Dibley, Norton, & Whitehead, 2018). The lead author’s previous work (Dibley et al., 2018) indicates that kinship stigma might have a more profound negative impact on people than other forms of stigma, and, thus, warrants further exploration. “Kinship,” taken as the relationship between members of the same (biological) family, is a nebulous notion that anthropologists have long argued over, but that has recently been described as a “mutuality of being” (p. 2) in which, among other phenomena, what one person does or suffers also happens to others bound by the same ties (Sahlins, 2011). This speaks to a biocultural model of stigma, in which a person of difference who threatens group cohesiveness due to physical weakness that prevents them from contributing fully, or by introducing contagion, or through an inability to reciprocate with group activities (perhaps through illness or disability) will be ostracized as a result (Neuberg et al., 2000). A study of the meaning of family stigma as experienced by adult children acting as caregivers for a parent with Alzheimer’s disease (Werner, Goldstein, & Buchbinder, 2010), in fact, describes courtesy stigma—that arising from association with a person with a stigmatizing mark, rather than the direct stigmatizing between family members as defined by the kinship stigma we describe here. Moses (2010) investigated perceptions and impact of stigma from family members among adolescents with mental health disorders, but did not explore the meaning of this experience. Because family support is a known factor in adjustment and normalization in chronic illness (Nicholas, 2010; Whitehead, Jacob, Towell, Abu-Qamar, & Cole-Heath, 2018), exploring kinship stigma is a necessary step toward understanding the potential impact it may have on living well with a chronic illness. This article presents a detailed exploration of the experience and meaning of kinship stigma in people with IBD. The relevance of kinship stigma for health care providers for those with chronic illness is also discussed.

Philosophical Framework

Heidegger’s interpretive (hermeneutic) phenomenology guided the study (Heidegger, 1962). The philosophy focuses on Dasein (“being there”) and is suitable for exploring experience as it recognizes that “being” (existence) does not occur in isolation, but in relation to “there”—the context in which the experience occurs. Heidegger (1982) proposes that “The self which the Dasein is, is there somehow in and along with all intentional comportments” (p. 158)—in other words, the person is always within, rather than separate from, their experiences. Hermeneutic interpretive phenomenology is, therefore, appropriate for guiding exploration of the sociological phenomenon of stigma, which arises as a result of the hermeneutic interplay between the Dasein and background (context) of players in the social interactions through which stigma is experienced.

Participants

The study was advertised via social media outlets of a U.K. IBD charity. In total, 66 interested respondents received the study information leaflet. Drawing on Goffman’s (1963, p. 13) definition of stigma as “an attribute that is deeply discrediting,” and mindful that the mark (IBD) is a stigma, and feeling stigmatized is a consequence of that mark, kinship stigma was defined for this study as “Being, or feeling that you are being treated differently and perhaps negatively, because of your IBD, by those close to you from whom you might expect to receive full support.” This behavioral definition reflects the fact that the study focus was on enforcement of social norms (bowel control) and the desire of others to avoid disease (Stuber et al., 2008).

A total of 18 respondents who met the inclusion criteria (over 18 years old, self-reported diagnosis of IBD, English-speaking, living anywhere within the United Kingdom) took part. There were no exclusion criteria. No one withdrew from the study. In total, 77% of participants were female, 77% had CD, all were White British, and ages ranged from 21 to 64. The research team comprised originally of four White females and one White male from the United Kingdom, United States, and Canada. All have PhDs and experience in qualitative research, including hermeneutic phenomenology. Two have experience of stigma research. Participants were informed that the study built on the findings of the lead author’s doctoral research.

Data Collection and Analysis

Researchers using hermeneutic phenomenology recognize that language is the means by which people learn, make sense of, and share understanding (Gadamer, 2004; Holroyd, 2007) and that language constitutes more than what is actually said (Peck & Mummery, 2018) so that oral data collection methods are appropriate. Data were collected via individual, in-depth, unstructured, face-to-face, telephone or Skype interviews (25-75 minutes) with the participant only, using a digital audio recorder. Field notes were recorded post-interview. All interviews were conducted by the lead author, and were completed alongside concurrent data analysis. There was no preset topic guide and no follow-up interviews. Participants were invited to “Tell me about a time when you felt stigmatised by a member of your family.” Participants used their own definition of family. Through co-constitution, issues arising within interviews were explored further and confirmed by participants, negating the need for post-interview member-checking (McConnell-Henry, Chapman, & Francis, 2011). Hermeneutic phenomenologists agree that data saturation is impossible. Every experience is unique and incomplete, and there are always unheard experiences beyond the boundaries of any study (Ironside, 2006). The intention is to gather rich, co-constituted data and present a credible interpretation that represents the breadth of participant experience to the reader. Interviews thus continued until a range of experience was captured, but saturation is not presumed. Interview audio files were transcribed professionally, yielding 235 single-spaced, typed pages of narrative data.

Data were analyzed using an iterative hermeneutic method, based on Diekelmann, Allen, and Tanner’s (1989) approach, which facilitates identification of constitutive patterns and relational themes. Constitutive patterns appear across all transcripts, representing the common experiences shared by study participants. Relational themes appear in some transcripts, and are linked to and inform the constitutive pattern(s), revealing unique meanings of the phenomenon for participants. Analysis is intuitive and creative, rather than formalized and structured (Diekelmann & Ironside, 1998); the process (review, write, develop initial thoughts, consult the team, develop shared understandings and interpretations, revisit data as often as necessary to aid thinking) acts as a guide, rather than imposing a formality. The study team members read through each transcript independently, crafted an individual initial interpretation of the story based on their own reading of the text, and highlighted phrases and sections that resonated with them. Spence (2017, p. 838) explains that

the meanings we derive from our experiences are not only constituted rationally . . . We also respond emotionally to situations. Furthermore, because we make differential judgments about the importance or relevance of the feelings we experience, our emotions incorporate a sense of what is important to us. Thus, there is always a connection between feeling and judgment.

Inevitably then, hermeneutic researchers “see” meaning that has both rational and emotional resonance with their own experiences—what Gadamer (2004) calls prejudice, and which he views as a core part of our being that cannot be ignored when we strive to understand others’ experiences. Analysis is, thus, also a co-constitutive process that incorporates the Dasein of both researcher and researched. To promote the benefits of such prejudice and to avoid it becoming a negative influence, rigor is achieved through repeated visits to the data, team discussion and analysis, and reflexivity throughout. During later Skype meetings, these individual interpretations and promising lines of inquiry were discussed and debated, and new shared team interpretations, from which the final relational themes and constitutive pattern emerged, were developed. Notes were taken at each meeting by team members, to inform later review of analysis. Early transcripts were revisited as ideas emerged during later analysis, so that each transcript was revisited several times (Table 1).

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Table 1.

The Analysis Process, Based on the Interpretive Hermeneutic Method of Diekelmann, Allen, and Tanner (1989).

Stage	Process	Action Taken for This Study
1	Read transcripts (individually and as a whole) to gain overall understanding	Each team member read through every transcript individually
2	Write summary (interpretation) of each transcript; begin to identify themes and patterns	Each team member created a first interpretation, based on their reading of transcript, and identified early potential issue of interest across transcripts
3	Agree summaries to reach consensus. Resolve conflict by returning to original data	Skype meetings to debate and discuss summaries. Early findings compared and discussed; further summaries developed
4	Reread all texts: identify hidden meanings and relational themes	All transcripts revisited by team to carefully review for presence of early relational themes and constitutive pattern
5	Describe constitutive patterns	One constitutive pattern confirmed
6	Verify results by returning to interview transcripts	Team discussion to debate nature and context relational themes and constitutive pattern
7	Integrate and synthesize findings into an interpretive structure (final report)	Findings presented for publication

Through this continuous iterative process of interpretation, discussion, and reflection, the research team generated a deep, rich understanding of the phenomenon. Relevant literature from a wide range of sources was used to challenge, support, or extend the emerging interpretations during the analysis process.

Unlike Husserlian (descriptive) phenomenology, where prior knowledge is expected to be bracketed out to reach the true essence of experience (Lopez & Willis, 2004), Heideggerian phenomenologists embrace the fundamental contribution that prior experience and knowledge bring to the understanding, interpretation, and co-constitution of new experience:

Doing robust hermeneutic phenomenology requires opening oneself to a journey of contemplative thinking, questioning, and writing. In addition to continual engagement with prior understandings throughout the research process, this means embodying attitudes and behaviors that keep open the play and support the continued playing out of possibilities. (Spence, 2017, p. 841)

Team members, therefore, brought their existing knowledge of theory and research to the interpretive process. All members immersed themselves in the literature to help further explore and understand the emerging ideas. For example, when considering the role of perfection in the relational theme Being the disease/Having the disease, one team member who was aware of Hyde’s (2008) work on bodily perfection, offered this to the group to inform thinking. In this way, literature was used to help reveal meaning, not simply situate the findings in the wider horizon of understanding.

Ethical Issues

The study was approved by a U.K. university ethics committee (Ref: LRS 14/15–1024). Participants gave written informed consent immediately prior to face-to-face interview. Consent was audio-recorded for those participating in a telephone or Skype interview.

Relational Theme: Being Visible/Becoming Invisible

This relational theme addresses the complexity of living with a chronic illness that is mostly invisible. The challenges of, and stigma associated with, living with invisible conditions are well-documented (Joachim & Acorn, 2000b; Quinn, 2006; Quinn & Chaudoir, 2009; Smart & Wegner, 2000), and reflect the dichotomy of hiding illness to “fit in” but, thus, being misunderstood because of lack of visible evidence of illness, and feeling stigmatized as a consequence. Although many participants recognized these difficulties, some wished IBD was more visible so that family might take notice and be more understanding. Paradoxically, it was often efforts to normalize their lives or hide the illness that commonly contributed to participants feeling that their illness was invisible to others. This participant was diagnosed with CD at 18 years. Growing up, he understood that “poo was disgusting” and perceived that same attitude in his first partner when he started having flares and bowel accidents:

When I got together with my first long-term partner it was very inactive, the Crohn’s. And, as it became more active—well, she didn’t really believe the suffering part. But . . . she found it icky. And intimacy died off because of her fear of an accident happening. She was quite happy to tell people that I had Crohn’s disease, but she was not happy to discuss anything poo-related. So I felt that I was not allowed to talk about it. I had to keep anything that happened secret, not only from other people for her sake, but also from her, because I got a feeling of disgust from her. . . . It was hurtful and caused me a lot of anxiety. It probably knocked my confidence for a very long time. Because, as it got worse, it became a much bigger part of my life that was disgusting and secret and hidden. (M, mid-40s, CD)

This story illuminates how maintaining secrecy and hiding the disease are aspects of IBD and how, increasingly, it may become invisible to close others. Other participants told of projecting confidence and withholding disease information so that people would not know about their situation. In many cases, this hiding did not help with family—members thought participants were “in a mood,” or lying about being ill because they looked normal, or as noted above, “didn’t really believe the suffering part.” Humans tend to be naturally suspicious of anything they do not understand, needing credible evidence of illness to believe it exists (Ali et al., 2000; Dancey, Fox, & Devins, 1999):

So at Christmas when we’re meeting up as a family, I might put my nice sparkly dress on or something and do my hair and everything. And the attitude I get from [my sisters] when they walk through the door is, “Oh look at you, now what have you got on now?” And rather than them saying, “Oh your dress looks nice,” knowing that I’ve been quite tired the last few weeks, it’s a bit of a, it’s a bit like a negative thing, and I just try to let it go. But sometimes it can be quite hurtful really. I think sometimes they do see me well . . . and so they’ve always been a bit dismissive with me. (F, late 40s, CD)

This participant’s attempts to cover her illness by dressing up for the holidays despite being tired are belittled by family members who, in this instance, only see the participant in terms of her illness; her holiday self is invisible. She is, thus, acknowledged, but negatively—her experience of life as a sister with a chronic illness remains unrecognized.

Hiding could cause further isolation and disconnection. Being treated as invisible often generated a sense of devastation, with feelings of betrayal or abandonment as participants hid their disease from others. Study participants lived the paradox of making efforts to make their illness invisible to others, yet that same invisibility contributed to family’s lack of noticing and acknowledging:

You know, I tend to gloss over [the IBD] really. And I feel better that I don’t have to hide it sometimes, you know, if I’m on my own, I can just be me. I can be in my pyjamas. And I can sit here and do what I want to do really without being judged, I suppose, or having any expectations. Yes, I just find [family] are not very supportive really in any way. (F, early 50s, CD)

Family members may, as the general public do, find it more difficult to acknowledge illness in conditions that are usually invisible, including IBD and epilepsy, irritable bowel syndrome, chronic fatigue syndrome, or chronic back pain, and more so when public knowledge about the condition is poor (Jenkin, Koch, & Kralik, 2006). Referring to Heidegger’s notions of concealment and unconcealment as relating to truth, Withy (2017) explains that to show up meaningfully is for an entity to be unconcealed as there, rather than not. In unconcealing (revealing) the self, a person with IBD shows themselves to be there, which may suggest availability to some degree of recognition and understanding from others. In concealing, albeit due to stigma and oppression from others, the person with any chronic illness is, philosophically, not there—and being unavailable to others may preclude acknowledgment. Illnesses such as cancer, diabetes, and heart disease—all of which are also invisible—attract empathy perhaps because of greater public awareness and/or increased prevalence, which facilitate acknowledgment. Literature from mental health, HIV/AIDS, and homosexuality studies also demonstrate the relationship between ignorance and stigma, and the role of education in stigma-reduction (Anderssen, 2002; Heijnders & Van Der Meij, 2006; Herek, 2010; Stahlman et al., 2015).

Relational Theme: Being the Disease/Having the Disease

To some extent, the dichotomous situation of “being” versus “having” a chronic disease is captured by participants’ hiding and becoming invisible to avoid being seen “as” their disease. In addition, family members’ perceived desire to change who the person is, so as to not be the disease, were illuminated in attempts to somehow “fix” the person and were another way the family failed to acknowledge the experience of illness. One participant revealed how her husband’s beliefs that he could make everything better caused more problems for her:

But when we were [changing our diet], it felt like he was blaming me for having Crohn’s. And all I needed to do was eat what he was telling me to eat and I’d be fine again. And there was a real resistance from me to listen to him, because of the way he was delivering it to me, in that, you know, “I’ve read a lot of research that dairy causes Crohn’s.” And I was so angry that he thought, even after all that he’d seen me go through, that it would be something as simple as not drinking milk would make me better. . . . He wants to fix me. He wants to fix me for me, but I think he also wants to fix me for him, because when I’m ill, I’m not who he met and I’m not who he married. (F, late-30s, CC)

Several participants shared their frustration at family member’s attempts to “fix” them. What may (or may not) have been offered as helpful advice from a family member or a friend was commonly received as an attempt to fix me. Participants’ response to this fixing was shared with a sense of anger or betrayal. In essence, you love and accept and support me, but then want to fix (change) me. In the lived experience of being fixed, the person and the disease become one and the same.

This is similarly reflected in the story of one participant who refers to her (now deceased) mother’s own eventual diagnosis with CD and need for an ileostomy. Her mother was disgusted by her own ileostomy, and could not bear to look at, or after it:

If she felt disgusted about herself having it done, then what did she feel about me having it done? I’d always thought that she’d accepted it. But she wasn’t accepting it for herself, which I found really, quite difficult, quite hurtful at the time . . . as soon as she was told she might have to get an ileostomy, it was the worst thing ever—the thought of it was just disgusting. Well does that make me disgusting then, because that’s what I’ve had? I don’t know, but it did make me feel pretty horrible actually. (F, mid-40s, CD)

The story illuminates the struggle of maintaining self by needing to make a distinction between having the disease (the disease is disgusting) and being the disease (I am disgusting), a struggle made more difficult for the participant by her mother’s response.

Participants’ experiences reveal a desire for seeking acceptance by others of one’s imperfect body, against others’ expectations of outward normalness of that body. Heidegger (1985, p. 154) proposes,

What is to be determined is not an outward appearance of this entity [this body] but from the outset and throughout solely its way to be, not the what of that of which it is composed but the how of its being and the characters of this how.

Phenomenologically speaking, being fixed by family foregrounds and prioritizes the outward appearance of the body as an organism that looks and behaves normally, while being accepted as participants “are” speaks to the how, the lived experience, of the imperfect body. Echoing Frank’s (2002) dichotomous identity of the ill body—the objective body versus the lived body—Defenbaugh (2011) further illustrates Heidegger’s notions of appearance versus the how of being in her narrative account of living with IBD, revealing the struggle to see herself, her lived body, through the medicalization of her objective body. Similarly, Jacobsen (2011, p. 3) contends that

the current stance . . . generally treats the agoraphobic as if she possesses a “natural,” generic, and merely biological body, rather than a lived body. In other words [it] fails to account for the fact that our bodies are meaningful: Our bodies have a developed history, which means there is a story behind their accomplishments and their problems.

When family ignore the lived IBD body and focus on expecting an objective (healthy) body, they perhaps fail to acknowledge the developed history that makes the sick body meaningful, and perceive the person “is” IBD, rather than as “having IBD,” a lack of acknowledgment that reveals its meaning in kinship stigma.

Relational Theme: Amplification, Suffering, and Loss

Chronic illness can have a devastating impact on family relationships—often exacerbating existing tensions or weaknesses, and frequently leading to wide-ranging experiences of loss. Participants revealed such losses associated with their disease in many ways, often with an accompanying sense of grief. Some lost their schooling, social activities, employment or companionship, or became estranged from partners, siblings, or parents:

I got diagnosed when I was thirteen . . . and when I became really unwell, my dad left me and my mum. He said that he couldn’t handle the stress of me being ill. When he left, he basically cut contact with me. I’d only see him probably once or twice a week and even then he wouldn’t mention my illness. He’d try and steer away from it, which then led on to all his family not wanting to know me. (F, early 20s, UC)

This participant had not perceived any difficulties in her parents’ relationship with each other or with her prior to her illness, but chronic illness can be detrimental to family relationships (Golics, Basra, Salek, & Finlay, 2013; Wittenberg, Saada, & Prosser, 2013). Her lost relationship with her father is amplified into lost relationships with her paternal relatives. Family acknowledgment of chronic illness in a family member may have an influence on the capacity of the relationship to endure (Badr & Acitelli, 2005). However, acknowledging in a negative way can fracture an already damaged relationship:

If you’d have seen and heard my sister and mother, you’d have thought that they were being perfectly supportive. But in actual fact, really very soon after diagnosis, it kind of confirmed their view of me as somehow having caused it or created it or there was an inevitability about it, which led from damaged goods . . . something broken and not quite right. (F, early 50s, CD)

This participant had previously endured an abusive relationship with her father; her mother, refusing to believe her, had blamed her for the abuse. The later diagnosis of CD amplified her mother’s and sister’s opinion that she attracted trouble, and their relationship deteriorated further. By the time she participated in this study, she was no longer communicating with her mother at all.

While robust emotional and social support from intimate partners is beneficial for self-management in chronic conditions (Gallant, 2003), in this study, lack of acknowledgment commonly widened existing cracks in relationships, compounding (amplifying) the preexisting weaknesses and increasing the likelihood that relationships will be lost. This all-consuming deep-seated, personal, and lasting loss was generally acknowledged by participants as devastating, and suffering was experienced by some as being hurt, let down, and as not belonging. Because the sense of loss overwhelms and perhaps limits other aspects of their lives, it also amplifies the important facet of “I AM Crohn’s,” or “I AM Colitis” and adds meaning to the experience of kinship stigma.

Constitutive Pattern: Lacking Acknowledgment/Being Acknowledged

This constitutive pattern links the three relational themes together and reveals the meaning for participants when their illness, or the consequences and implications of it, are either recognized or ignored. Feeling invisible to others, living the illness, and suffering loss perhaps through amplification of existing vulnerabilities within relationships, reflect particular experiences of kinship stigma—the significance of which lies in the lack of understanding and acknowledgment offered by family. Tomm (2002), and Tomm and Govier (2007) explain that to acknowledge means to accept, admit, or recognize the truth or existence of something, and show that one has noticed by making a physical or verbal gesture of some kind. Furthermore, they advise that

acknowledgement is central, not only for enabling reconciliation, but also for generating and maintaining human wellness . . . The absence of acknowledgement that one exists and merits recognition in the experience of another can be experienced as an assault on one’s very being. (Tomm & Govier, 2007, pp. 139, 145)

Acknowledging in a positive way reflects understanding, empathy, and sympathy while lack of acknowledgment reveals not only the passive absence of these factors, but sometimes a purposeful denial of the evidence that something exists. Denial could mean not believing credible explanations:

My uncle didn’t believe me. He’s known about my illness from the start, but when I was ill after a night out he accused me of having drunk too much alcohol, even though I told him it was the Crohn’s. He didn’t believe me, would not take my word for it. Why would I fib about drinking? I can’t [drink alcohol] with the Crohn’s because it can set me back days. You expect your relatives to believe you, why would you make something up? (F, late-50s, CD)

Denial was also evident when family failed to account for specific disease-related needs:

My sister’s known about my Crohn’s disease all this time and yet she will invite me round for a meal and still not think about what I can eat, at all. She’ll have cooked a curry, and I’ll say, “Can I just have some of the rice and some sauce?” And she would respond, “Oh, I don’t know . . . you’re a bit complicated, it’s very complicated isn’t it?” I said, “No, not really, I have already told you.” There’s just no thought there at all. (F, early 50s, CD)

Food is an important part of human socialization, and in many families, is central to the way they come together (Beardsworth & Keil, 1997; Fulkerson, Neumark-Sztainer, & Story, 2006). Ignoring the specific dietary needs of a family member with IBD excludes them from mealtimes, marks them as “other,” and reinforces feelings of not being supported by family. Ridiculing dietary needs is experienced as demeaning:

My brother and his wife had made some dessert with dried fruit in it. And I said, “Oh I can’t have dried fruit because I’ve got a stoma bag.” And my brother said, “Oh don’t be a pussy.” We were just sitting round the table with his wife, a couple of kids, myself and my girlfriend. It’s just unnecessary. It’s just not needed. (M, early 30s, CD)

Participants were often unable to understand stigmatizing attitudes coming from family members and sometimes sought explanations that might explain behaviors:

I wish I could have talked to my mum, but she didn’t seem to understand my illness. She was always brushing it aside as if, “Oh no, it’s not a problem.” Only it was a problem. I think she was the worst member of my family for not understanding what I was going through. I don’t know whether she was frightened of my illness or pushed me away. I don’t really know why that would be. Unless mum didn’t like the fact that I wasn’t perfect. And I always had been up until then . . . Perhaps she didn’t want to think there was anything wrong with me. (F, mid-60s, UC)

The expectation of, and striving for perfection, is a human endeavor (Hyde & McSpiritt, 2007). From the moment of birth, and realization that that new arrival either is, or is not, perfectly formed, humans proceed on their life journey creating their own understanding of what it is to be perfect, just as humanity itself strives for technological and biophysical perfection (Hyde, 2008). Each individual’s understanding will be influenced by others’ opinions, one’s own perceptions, and, in the modern, media-fueled world, by social representations of the apparently perfect body. People with IBD do not have a perfect body (Defenbaugh, 2011) and, moreover, have one that misbehaves in ways that challenge social rules. Family are as vulnerable to those rules as anyone else is, and this may be what drives stigmatizing attitudes toward the family member with IBD: families perhaps sense the risk of discredit they will endure if the family is exposed as carrying a stigmatizing mark. In some ways, this describes the courtesy stigma addressed by Werner et al. (2010)—when another person feels stigmatized by their association with the marked individual—but courtesy stigma does not usually involve behaving in a stigmatizing way toward the marked person. This may be what marks kinship stigma as unique—it includes components of other established types of stigma (anticipated, perceived, felt, enacted, courtesy) frequently referenced in medical sociological literature but has a different, perhaps more devastating, impact because the stigmatizing attitudes originate from family members. The impact of kinship stigma was illustrated when families, who failed to listen to participants trying to explain how unwell they were, ignored clear signs of a very obvious problem:

[The family belief was] “It’s not that serious. She’s probably just exaggerating,” which is how, I think, even leading up to my diagnosis, my mum felt. I think she genuinely thought I was exaggerating, particularly on my actual wedding day. We were late because I couldn’t get off the toilet because there was so much blood. And she just said it was nerves. And I was like, “Really, when you’re nervous, do you have blood pouring out of you? Is that what happens, Mum?” (F, late 20s, UC)

Social expectations exert a powerful influence over the way humans behave with each other. The need to conform or fit in with the majority behavior is so important that people expend a great deal of effort and energy managing the impression they give to others, as well as scrutinizing others to determine if they meet the expectations. Goffman (1963) explains that society categorizes people and assigns them a set of attributes relevant to the category within which they are placed. For example, we expect a person who lives in a middle-class area to have all the other middle-class attributes associated with the status indicative of that area. The categorized are also required to behave in expected ways, pertinent to their position. In this study, perhaps the need to conform to social expectations overrides the family’s ability to acknowledge the needs of the person with IBD:

My wedding day was a wonderful day, but really I needed to leave at eight o’clock and go to bed. That was what was needed. But the family, they just wouldn’t let me. When I tried to mention it to my mum, she was like, “People have come from miles, we’ve paid a fortune, make the most of it.” (F, late 20s, UC)

Fatigue is common in IBD and can be extremely debilitating (Czuber-Dochan, 2015; Jelsness-Jorgensen, Bernklev, Henriksen, Torp, & Moum, 2011); people learn to manage their energy resources by pacing their activities to get through each day. When family prioritized social expectations around wedding day behaviors by focusing on giving the right impression to wedding guests, the needs of the bride with IBD were ignored. Failing to acknowledge evidence of, or adjustments needed because of illness is stigmatizing because it labels people as Other and, therefore, different from the norm (Canales, 2000). Being Other implies that the person is “less than”—less valued, less worthy (Beggan & DeAngelis, 2015; Imafidon, 2017). Goffman explains that when we realize that the person before us has an attribute that marks them as Other, they are “thus reduced in our minds from a whole and usual person to a tainted, discounted one” (Goffman, 1963, p. 12). This 1960s language is dated now, but the meaning is clear and remains relevant—broadly speaking, humans think less of others who do not fit their social expectations. When families fail to acknowledge IBD-related needs, they fail to acknowledge their family member and so treat them as Other:

My eldest daughter organised a buffet party at a local venue. She knows the man who owns the place . . . he was doing food . . . pizzas, barbecued chicken wings and spicy wedges. And I said to my daughter, “Would it be alright if I rang and just asked if he could do me something a bit separate?” “He can’t be doing that,” she said, “It’s a blinkin’ bar, he’s got loads on, he wouldn’t be able to be cooking separate things.” And I said, “Right, okay, so maybe I could bring something.” “Mum, you’re not turning up bringing something, for goodness sake. That’s so embarrassing—can’t you eat before you come?” And I was thinking, “This is my own daughter who is asking me to eat before.” So everyone else is going to be eating in a nice sociable way and what am I—just going to be standing there not doing anything? (F, early 50s, CD)

Failure of family to acknowledge the impact and consequences of IBD creates a stigma that is different, and seemingly more devastating for the individual than stigma arising from other non-family relationships:

It’s the lack of support from something you came from. You’re half of them—that’s what it is. There should be more than just “I don’t believe you!” Is that the best you can do?—It is a deeper feeling. It’s somewhere down here in the gut. You need to be connected. The person with the disease needs to be accepted, especially from the parents. Without it, it’s almost like an abandonment thing, I suppose. (M, early 30s, UC)

Acknowledgment means acceptance, acceptance validates experiences, and stigma is an individual perception. The sister who felt dietary needs were complicated may simply not have understood, but for the participant, the lack of effort, attention, and care meant she perceived herself to be treated as worthless and Other, and that for her was stigmatizing. While other people with IBD with similar experiences might feel quite different and not stigmatized, participants in this study found these experiences, from these family members, stigmatizing, and the impact on them was one of feeling unacknowledged, othered, and abandoned.

In contrast, several participants talked about supportive partners, parents, and siblings. Critically, no grand gestures are needed—just recognition of the situation the ill person finds themselves in:

Support from family, for me, feels like I just want to know that they care. So it’s sort of the odd, “Are you alright?” you know, just reassurance really. (F, early 40s, CD)

A few words are all that is needed to send a subtle yet important message of inclusion, acceptance, and understanding. The impact of having family “on your side” is profound. One participant’s parents had divorced shortly after her diagnosis; her mother had been unflinchingly supportive through the trials the UC had thrown, and continued to throw, at this young woman:

It means a lot to me to know that my mum is there for me. I wouldn’t have done it without my mum, I don’t think. (F, early 20s, UC)

The role of family is critical in the illness experience of the person with IBD. Another participant had come to understand, significantly, that

It’s almost like the whole family get the disease. It’s not just you. We are a family with Crohn’s disease. (F, mid-40s, CD)

This observation supports the accepted view that chronic illness is a family affair (Bostrom & Nilsagard, 2016; Wright & Bell, 2009) and points to the need for a family approach to nursing and social care.

Strengths and Weaknesses

The study benefited from an experienced international team that ensured robust processes, and a strong relationship between philosophy and method. Transatlantic analysis via Skype was often challenging and dependent on secure Internet connections. While it enabled the study to be delivered, remote analysis challenged the Heideggerian concept of “being there.” To counteract this, team members also met and discussed data at the annual Institute for Hermeneutic Phenomenology in the United States. Study participants were mainly female and Caucasian, reflecting the membership demographics of the charity from which we recruited. The perceptions of stigma from family members may be experienced differently by individuals from other cultural or gender groups.