What motivates individuals with sickle cell disease to talk with others about their illness? Reasons for and against sickle cell disease disclosure

Abstract

This interview study documented how individuals with sickle cell disease make decisions about who to talk with concerning their illness based on psychological and interpersonal issues that are important to them. Reasons for sickle cell disease disclosure to specific persons were self-related (receiving support, venting feelings), other-related (educating others about sickle cell disease, forewarning others about sickle cell disease-related problems, someone asked for information about the disease), or situational (mostly focusing on another person being physically close or available to talk to). Reasons for sickle cell disease nondisclosure to specific persons were self-related (fear of rejection, being stereotyped, maintaining privacy) or other-related (lack of support, not worrying someone).

Keywords

self-disclosure sickle cell disease sickle cell disease disclosure sickle cell disease disclosure-decision-making

Sickle cell disease (SCD) is an inherited, blood-borne disorder that affects millions of people worldwide—including over 89,000 people (mostly African Americans and, to a lesser extent, Hispanics and other ethnic/racial groups) in the United States (Brousseau et al., 2009; Centers for Disease Control and Protection, 2015a). In SCD, red blood cells turn sticky and stiff and adopt the shape of a sickle or crescent which clogs small blood vessels, interrupting the flow of oxygen-carrying blood to various parts of the body. In turn, the clogging of small blood vessels by sickled red blood cells may cause a variety of physical problems, including a shortage of red blood cells (anemia), tissue and organ damage, increased risk of infections, and frequent episodes of pain (especially in the chest, arms, and legs). Although in the 1970s the life expectancy was 14.3 years, today individuals with the most severe form of the disease can expect to live to 50 years and others into their mid-60s (Centers for Disease Control and Protection, 2015b; Platt et al., 1994).

There have been important medical advances in understanding SCD, including research on the assessment and treatment of SCD-related pain (e.g. Smith et al., 2005, 2008). Research by Gil and colleagues is a notable example of how a focus on psychological variables (especially stress and psychological coping mechanisms) may also be useful in understanding the experience and management of SCD-related pain. For instance, Gil et al. (2004) found that an increase in daily stressors and negative mood is associated with more same-day pain and pain 2 days later. Positive mood on a particular day is also associated with lower reported same-day pain and pain 2 days later. Other psychological research indicates that higher endorsement of self-efficacy to manage SCD-related pain and symptomatology on a day-to-day basis is associated with fewer physical and psychological symptoms, fewer visits to a physician, and lower reported severity of SCD pain after 12 months (Edwards et al., 2001). Racial and ethnic stereotypes by medical professionals may also affect the labeling and medical care of SCD patients. When SCD patients (most of whom are African Americans in the United States) use opioid medications (e.g. morphine, oxycodone, or methadone) when sickle cell pain is severe, they risk being stereotyped as “drug seekers” or “drug addicts” (Barbarin and Christian, 1999; Jenerette and Brewer, 2010).

In this article, our primary goal, via open-ended interviews, was to advance understanding of the psychological and social challenges affecting persons with SCD. We asked participants about the reasons why they would or would not talk to others about their SCD disease. We also asked them to identify “who” they did or not talk to about SCD. We used the term sickle cell disease disclosure to refer to talking openly about one’s thoughts and feelings about the disease to others. Focusing on the reasons for and against talking about SCD with specific others can illuminate issues patients face in living with this disease.

Prior research on SCD disclosure (Derlega et al., 2014) found that patients reported talking about SCD pain episodes mostly to their mother, an intimate partner, a close friend, a primary physician, a primary nurse, a counselor, and/or God. The helpfulness of talking to specific others (especially to an intimate partner, a close friend, and their primary physician or nurse) was also associated with a greater willingness to visit a physician in coping with a pain episode in the future. Despite this preliminary research about disclosure of SCD pain episodes and its role in pain management, no research exists on why someone with SCD does or does not talk with particular persons about SCD-related issues.

Building on earlier research concerning disclosure decision-making among persons with human immunodeficiency virus (HIV; Derlega et al., 1998, 2002), we expect that SCD patients will identify benefits as well as costs associated with SCD disclosure. SCD patients might perceive that SCD disclosure will provide access to emotional as well as tangible support from family, friends, intimate partners, and health professionals. SCD disclosure to partners might also help someone with SCD to communicate more openly about possible parenting issues (e.g. acknowledging the risk of having a child with the sickle cell trait or SCD) as well as the myriad challenges in sustaining a successful, intimate relationship (e.g. anticipating SCD-related medical complications facing the person with SCD, how to manage child care in case of a medical emergency). On the other hand, talking about SCD may incur risks. Talking about one’s SCD may lead to rejection by others and it may cause distress for family and friends. Revealing one’s SCD diagnosis to a new acquaintance may also lead to a loss of privacy (due to a loss of control over personal information about one’s SCD diagnosis if the other person reveals this information without permission).

In summary, we expect that issues of “to whom” and “what to say” about SCD are a major concern for individuals living with this disease. The research may also shed light on the possible tension between the need to talk about SCD issues to others (e.g. to gain support and/or medical information, to forewarn others about medical symptoms and physical complications) and the wish to conceal information about SCD (e.g. due to fear of rejection, to protect others from being upset).

Methods

In all, 24 individuals with SCD participated in the interview study. The participants (6 men and 18 women) were patients at a Sickle Cell Disease Clinic in southeastern Virginia who participated in a study on the “Social and Personal Effects of Living with Sickle Cell Disease.” The participants were African Americans and their average age was 33.58 years old (standard deviation (SD) = 8.79). In all, 14 participants were diagnosed with sickle cell anemia (Hb SS), 6 with sickle cell hemoglobin (Hb SC), 3 with sickle beta thalassemia, and 1 person did not identify her/his SCD diagnosis. Participants experienced an average of 7.39 (SD = 6.85) pain episodes in the last 12 months. The average number of emergency room visits in the last 12 months was 3.37 (SD = 3.97), and the average number of days in hospital was 7.97 (SD = 10.29). Participants made an average of 8.63 (SD = 11.02) physician visits in the last 12 months.

Participants varied in their marital status: five were married, three were divorced; nine were single with an intimate partner; six were single without an intimate partner; and one was widowed.

The interviews were part of a larger study on interpersonal and religious/spiritual issues in living with SCD (Derlega et al., in press). We focus in this article on participants’ responses to open-ended questions about reasons for talking versus not talking to specific persons about sickle cell-related issues.

Relying, in part, on our previous work in coding people’s explanations for disclosure/nondisclosure (Derlega et al., 1998), two psychology doctoral students (in collaboration with the first author) developed a coding system for categorizing reasons for and against SCD disclosure. Initially, the two coders met (along with the first author) to discuss their independent coding of eight randomly selected interviews for SCD disclosure and nondisclosure. This coding system was then applied to code another eight interviews. The coders met a second time to make revisions. This revised coding scheme was used a third time to check the coding of the last eight interviews and to arrive at a final coding scheme.

Next, another doctoral student (along with the first author) separately coded all 24 transcripts using the coding system noted above. Coding was done for statements in the transcripts that were previously identified by the first author as “explanations” for SCD disclosure or nondisclosure. Each coder had to designate the reason for SCD disclosure or nondisclosure as well who (e.g. mother, father, friend) was the target of disclosure or nondisclosure. In cases of disagreements in coding specific reasons for SCD disclosure and nondisclosure, the two judges resolved the disagreements via discussion. There was a 92.7 percent agreement between the two judges in scoring reasons for SCD disclosure, and 95.2 percent agreement in scoring reasons for SCD nondisclosure.

Results

The reasons for SCD disclosure were broadly divided into three main categories: focusing on personal-, other-, and situation-related reasons. There was also a miscellaneous category where we were not able to categorize reasons for SCD disclosure within our coding scheme. Self-related reasons for SCD disclosure included (1) receiving empathy, emotional support, or understanding from someone; (2) receiving information, advice, or tangible assistance; and (3) catharsis, emotional relief, or release of pent-up thoughts and feelings about SCD. Other-related reasons for SCD disclosure included (1) providing information and advice to another person about SCD (especially to educate someone about the disease); (2) providing empathy, emotional support, or understanding to others; (3) forewarning another person about SCD-related issues the participant is likely to face in living with the disease and/or informing someone about one’s SCD diagnosis; and (4) another person initiated talk about SCD. There was also a situation-related reason for SCD disclosure: the nature of the situation or physical proximity (e.g. another person was present at the time of a pain episode, another person knew about a SCD-related hospitalization, and another person lived with the participant). Only one reason for SCD disclosure was scored as miscellaneous. One participant reported that she experienced greater self-understanding about SCD by talking to her children about the disease. See Table 1 for a list of the reasons for SCD disclosure, definitions, and examples.

Table 1.

Categories of reasons for sickle cell disease-related disclosure, definitions, and examples.

Category	Definition	Examples
Receive empathy/emotional support/understanding	The other person can provide emotional support or he/she understands challenges in living with SCD	“She [my mother] was encouraging me, help pushing, don’t give up” “They [other person with SCD] understood what it’s like to take a whole bunch of pain medicine, or a whole bunch of other medicine” “I talk to Jesus Christ, my Lord and Savior. He is all-understanding”
Receive information/advice/tangible assistance	The other person can provide helpful information or tangible assistance	“When I was growing up, I would ask questions with the doctors” “I can talk to my aunt. She’s been in the medical profession all of her life. Her husband also had cancer and a lot of the medicines he was on then, I’m on now. So, I can talk to her about “What’s good for nausea?’, or ‘What can I take for diarrhea?’, or “What can I do for the burning sensation I get from the medications?’”
Catharsis	Talking about SCD to another person(s) provides emotional relief or a release of pent-up feelings	“[Talking to my husband] you just kinda vent” “I talked to my children’s father about it [SCD]. I feel comfortable talking about it to him because it made me feel real relief” “You go through a lot of things when you have sickle cell and sometimes you just need people to talk to. It’s a chance to get your feelings out”
Provide information/advice and/or to educate others	Educate or inform others about SCD and SCD-related issues	“I talk to my husband about SCD concerning our daughter. I let him know new things, like her doctor’s appointment. I always let him know what goes on. They [doctors] had me do a 24 hour urine collection because there was something wrong with her urine at her comprehensive appointment. He didn’t understand and I was trying to explain to him, ‘Well, it’s something about her kidneys.’” “I did a lot of education people about sickle cell when I was growing up. I used to write reports about sickle cell disease and shared them with my classmates and teachers so it would give them a better understanding about the disease” “I was out with my friend playing pool, and he brought along a friend of his. I asked him to come out and support something about sickle cell disease. He’s like, ‘Oh, doesn’t that affect only dark skinned people?’ They die in their 20’s and they are always in the hospital until they die. And so, I listened to him and then I had to educate him and say, ‘Did you know, I have sickle cell disease.’” “My son is 10 and there are times when I can’t do the things he wants. So I talk to my son. I want him to understand about sickle cell, what he can’t get from reading a pamphlet”
Provide others with emotional support	Talking about SCD is intended to provide emotional support to other person(s)	“I talked to someone else who has the disease. She was having lots of problems and she was going through a whole lot. She was very depressed. So I opened up to her to let her know that she wasn’t the only one going through the things she was going through with the disease”
Forewarning	Inform other(s) about one’s SCD diagnosis or about SCD-related issues that one might encounter in the future	“I told my boss that I have sickle cell disease and some of my supervisors. That’s just covering my tracks” “When I’m coming into something, I always call B [the SCD nurse at the local hospital] to let her know that I’m feeling bad. I am not sure yet, but I’m just wanting to give you a heads up, that maybe in 2 or 3 days, when I may be needing a CA [patient-controlled analgesia], maybe needing fluids and things like that” “I will let them [boyfriends] know upfront about my sickle cell disease because I don’t want to be in a relationship that they can’t handle. What I’ve learned is the sooner I let them know, if they want to go the opposite way, then they can and no feelings are hurt”
Other(s) initiated talk about SCD	Another person initiated talk about SCD, or asked for information about SCD, or inquired about how the patient was coping	“A friend of mine in high school just had a baby and her baby got tested for sickle cell. She knew that I had sickle cell disease and she asked me, ‘How did my baby get it? I don’t have it and her father doesn’t have it.’ So, I said, ‘Well, you both must the trait in order for her to have sickle cell!’” “Sometimes my cousin calls to check up on me and to see how I am doing and what is going on with me” “A lot of my teachers will ask me every day, ‘How are you doing You feeling well?’ Basically, everyone knows that I have sickle cell disease and I guess sometimes they will look at me and see that I am tired or if my eyes are jaundiced and so they will always pull me over to the side and ask me, ‘Are you okay? Are you tired? You don’t need to be here if you don’t need to be’”
Situation or other’s availability	The other person is available or close by (e.g. other is present when the patient has a pain episode or is in the hospital)	“I was with my older cousin when I had a pain crisis. I said, ‘Man, I’m hurting.’ He’d be like, ‘What’s going on? You taking medicine?’ I’d be like, ‘Yeah, I’ve been taking my medicine, but I’m hurting. My back hurts. Take me to the hospital.’” “On a personal note, I talk to my husband about sickle cell disease and that’s just because he’s there” “When I am in a crisis my roommate actually is the one that I usually talk to the most because she is there to take care of me”

The reasons for SCD nondisclosure fell into two main categories: personal- and other-related reasons. There was also a miscellaneous category that we used to categorize two reasons for SCD nondisclosure that did not fit into the coding system. Self-related reasons for SCD nondisclosure included (1) fear of being rejected, misunderstood, or discriminated against; (2) fear of being labeled or stereotyped (e.g. being seen as “sickly,” having a “blood disease” that made a person with SCD contagious); and (3) privacy (personal information about SCD as “one’s own business” and/or not wanting others to gossip about the participant’s SCD-related medical issues to others). Other-related reasons for SCD nondisclosure included (1) others’ lack of empathy, emotional support, or understanding and (2) reluctance to burden or upset someone by talking to them about SCD. There were two reasons for SCD nondisclosure that were scored as “miscellaneous”: “I try to forget about it [SCD] myself,” and “It’s just so common to me that it doesn’t come up.” See Table 2 for the list of reasons for SCD nondisclosure, definitions, and examples.

Table 2.

Categories of reasons for sickle cell disease-related nondisclosure, definitions, and examples.

Category	Definition	Examples
Rejection	Not disclosing of concern of being rejected or that the other person would think less of them	“I wouldn’t tell someone on a first date [about sickle cell disease]. I would think it would scare them off” “I feel like sometimes, even if you are in the living process, people, if they find out that you have that [SCD] before being hired, they’re more apt to not hire you” “You’d think if you educated people about sickle cell disease, they’ll understand it. But people turn away from you, people don’t want to be around you”
Being labeled or stereotyped	Doesn’t want to be seen as sickly or weak; people might inflate SCD (as a “hood disease”) with HIV/AIDS or see the patient as a “Drug addict”	“I have a couple friends who know I have sickle cell disease. But a lot of the time I don’t want them to look at me like I’m weak” “A lot of people, I don’t know why, when you say you have a disease, the first thing that comes to their minds is, ‘Can I catch it?’” “When you tell them [other people] that you have a disease, they look at you like, ‘What, you have AIDS or something?’ They look at it like that, like it’s a contagious disease” “A lot of days I feel so much pain. I feel a lot of pain and I’m getting sick and I don’t tell them [people in health care]. I feel if I tell them that I am having this pain or that pain, they’re going to think I’m drug seeking”
Privacy	Information about one’s diagnosis and experiences coping with SCD represents private information and it is “no one else’s business”	“I don’t really want everyone knowing my business” “I would describe myself as a very private person and I don’t like to tell everybody everything about me” “I didn’t share with other kids [about sickle cell disease]. I felt that it was none of their business”
Lack of emotional support or fear of being misunderstood	Concern that another person would not provide emotional support or the other person(s) would not understand the participant’s SCD-related experiences	“It’s really hard to find somebody to talk to because people really can’t understand unless they’re going through it” “I don’t talk to him [my brother] because he says it is a mind thing. If you don’t think about the pain and don’t think about having sickle cell, you won’t have it” “I’m the only child, but my mom had nine sisters and brothers and my dad had four. So we have a big extended family. Out of both sides, I am the only one with sickle cell disease. It was very isolating when you had no one else to talk to, to see what to do. I never really had anybody to confide in or talk to because no one else could share my experience”
Protecting others	Concern about another person’s ability to deal with information about how this patient is coping with SCD	“I feel like I can’t talk to her [my wife] because I don’t want to scare her” “I talk to my mother from time to time, but I don’t want to worry her about it [sickle cell disease] because she’s old” “I am not going to tell the kids that I have to have surgery. I tell them that I am here for such and such and mom’s going to be fine. I’m not going to say, ‘Well, I’m sick,’ and then they think that I might die”

Tables 3 and 4 summarize how frequently participants selected particular reasons for SCD disclosure and nondisclosure to various target persons. Across the types of targets, receiving empathy/emotional support/understanding, receiving information/advice/tangible assistance, and providing information/advice to others were selected most frequently as reasons for SCD disclosure. Friends, mother, other relatives/family, and intimate partners were most often the targets for SCD disclosure with the goal of receiving empathy/emotional support/understanding. Other relatives/family and mother were selected most often as targets from whom to receive information/advice/tangible assistance. An intimate partner was selected most frequently as a target when providing information/advice was a reason for SCD disclosure. Both an intimate partner and a supervisor/teacher were selected as targets most frequently when forewarning was a reason for SCD disclosure.

Table 3.

Reasons for sickle cell disease disclosure.

Reason for disclosure	Father	Mother	Other relative(s)/family	Intimate partners	Friends	Neighbors/people on block	Co-workers/classmates	Supervisors/teachers	Physicians/nurses	Acquaintances/other people	Own children	Person(s) with SCD	Church members/minister	God	Counselors/social workers	Journal	Total
Self
Receive empathy/emotional/support/understanding	3	5	5	4	5	1	0	0	2	0	2	2	1	1	2	0	33
Receive information/advice/tangible assistance	2	4	5	1	2	1	0	0	3	0	0	1	0	0	1	1	21
Catharsis/vent feelings	1	1	0	2	2	0	0	0	0	0	0	0	0	0	0	1	7
Other
Provide information/advice (e.g. to educate)	0	0	2	4	3	0	2	3	0	1	3	1	0	0	0	0	19
Provide empathy/emotional/support/understanding	0	0	0	0	0	0	0	0	0	0	0	1	0	0	0	0	1
Forewarning	0	0	0	4	1	0	0	4	1	1	0	0	0	0	0	0	11
Others initiated/asked for information about SCD	0	0	3	1	3	0	0	2	0	1	0	0	0	0	0	0	10
Situation
Situation/circumstances/proximity (being in hospital, having pain; other person present during pain episode; other lives with me)	0	0	0	3	2	1	0	0	0	0	0	0	0	0	0	0	6
Miscellaneous	0	0	0	0	0	0	0	0	0	0	1	0	0	0	0	0	1
Total	6	10	15	19	18	3	2	9	6	3	6	5	1	1	3	2	109

Table 4.

Reasons for sickle cell disease nondisclosure.

Reasons for nondisclosure	Father	Mother	Other relative(s)/family	Intimate partners	Friends	Neighbors/people on block	Co-workers/classmates	Supervisors/teachers	Physicians/nurses	Acquaintances/other people	Own children	Person(s) with SCD	Church members/minister	God	Counselors/social workers	Total
Self
Rejection	0	0	0	2	0	0	0	1	0	1	0	0	0	0	0	4
Negative label or stereotype	0	0	1	2	1	0	2	1	1	3	0	0	0	0	0	11
Privacy	0	0	1	0	0	1	0	0	0	1	0	0	0	0	0	3
Other
Lack of empathy/understanding/support	1	4	10	3	2	0	0	1	5	5	0	0	1	0	0	32
Reluctance to burden other(s)	0	4	2	1	0	0	0	0	0	0	3	0	0	0	0	10
Miscellaneous	0	0	0	0	0	0	0	0	0	2	0	0	0	0	0	2
Total	1	8	14	8	3	1	2	3	6	12	3	0	1	0	0	62

Across the types of targets, concern about a lack of empathy/understanding/support was cited most frequently as a reason for SCD nondisclosure. Concerns about being negatively labeled/stereotyped as well as a concern about burdening others were cited next most frequently as reasons for SCD nondisclosure. Other relatives/family and other people were cited most frequently as targets of SCD nondisclosure. Reasons for SCD nondisclosure were widely scattered among various types of target persons. Nevertheless, lack of empathy/understanding/support was cited most frequently as a reason for SCD nondisclosure for other relatives/family.

Discussion

First, we want to be cautious in drawing conclusions from this study. The interviews were limited to 24 participants (a majority of whom were women) who were patients at one SCD clinic in southeastern Virginia. Nevertheless, the participants shared a range of characteristics that are common to many SCD patients. A majority of participants had the most common type of SCD, Hb SS, or sickle cell anemia, followed by several participants who had the second most common type of SCD, Hb SC, and a fewer number who had inherited sickle beta thalassemia. Participants reported having pain episodes relatively frequently (7.39 pain episodes in the last 12 months), they saw their physician frequently (8.63 visits), and, less often, they had been patients at a hospital emergency room (3.37 visits).

The results, albeit preliminary, illustrate how individuals with SCD weigh a number of factors in deciding whether or not to talk to specific others about SCD. Receiving empathy/emotional support/understanding (particularly with one’s mother, other relatives/family, friends, and an intimate partner) was the most frequently cited reason for SCD disclosure, illustrating a socially mediated, personal benefit that individuals expected to receive from SCD disclosure to these particular persons. Similarly, receiving information/advice/tangible assistance (especially from one’s mother and other relatives/family) was the second and most frequently cited reasons for SCD disclosure. While it is clear that these individuals do talk to medical professionals (i.e. primary physicians and primary nurses) about SCD, it is interesting that they did not choose them when asked about sharing their “thoughts and feelings” about the disease. It might be that they took this disclosure for granted or perhaps they view these relationships as instrumental and, thus, not relevant when the focus is on sharing thoughts and feelings. We should also note—as a self-related reason for SCD disclosure—that some participants mentioned that they felt emotional relief in talking about SCD to particular persons (especially to an intimate partner or to a friend). Thus, talking to another person about SCD may relieve some of the burden of living with SCD.

There are other reasons for SCD disclosure that have an “other” perspective, but may also be beneficial for someone with SCD. Increasing others’ understanding about SCD was frequently cited (especially to an intimate partner, supervisors at work/teachers, friends, and one’s own children) as a reason for SCD disclosure. In particular, individuals mentioned talking about SCD to certain others in order to educate them about how to respond in a medical emergency. Increasing others’ understanding (i.e. providing information/advice) about SCD was also cited several times as a reason for SCD disclosure to co-workers/classmates and work supervisors/teachers. Some participants also mentioned this reason for SCD disclosure, particularly to work supervisors or teachers) so they would understand how SCD-related symptoms (particularly pain episodes) might cause them to miss work or school. Providing information/advice was most frequently mentioned in the context of talking to an intimate partner. Participants mentioned talking to a potential partner about possible SCD-related medical issues that the person with SCD and the couple might have to confront. A participant mentioned talking to a prospective partner about the need for the other person to be tested for SCD so they (as a couple) could assess the risk of bearing children with SCD or the sickle cell trait. In the case of having one or more children with SCD, a participant mentioned talking to her child’s father to educate him about the most current treatments available for SCD.

Forewarning as a reason for talking to others (especially to an intimate partner or to a work supervisor/teacher) was also frequently selected as an “other-related reason” for SCD disclosure. In particular, forewarning was most frequently used to disclose to an intimate partner, employer, or teacher that the participant had SCD and, in turn, she or he would have medical issues that might affect the relationship or absences from work or school. In one case, the participant mentioned talking to a nurse about her medical symptoms to forewarn her about possibly coming to the hospital in the next few days. In the case of forewarning as a reason for SCD disclosure, a few participants mentioned disclosing their SCD status to “test” whether a new dating partner was willing to be in an intimate relationship with them.

“Other initiated” was another reason for talking about SCD (especially to other relatives/friends/supervisor at work/teachers). Given that others knew about the participant’s SCD diagnosis, other persons might begin a conversation to learn more about the disease (e.g. on behalf of some family member who had SCD or sickle cell trait). In a few cases, teachers asked the participant to let them know if they were feeling well (e.g. “How are you doing?”), especially if the participant did not look well.

Finally, as a reason for other-directed SCD disclosure, one participant mentioned talking to another person with SCD to convey emotional support. It is interesting to note, in the psychological literature on coping with stress, that providing assistance and support to others has the beneficial effect (reducing risk of mortality) of buffering against the adverse effects of prior exposure to negative life events (Poulin et al., 2013).

Finally, situational factors may also influence SCD disclosure. For instance, another person might be “just there” to talk to, or another person(s) was “there” when the participant had a pain episode or someone found out that the participant was in the hospital or an emergency room with SCD-related medical complications.

Self- or other-directed reasons influenced the decisions of many participants about to whom to talk about SCD. But self- and other-directed reasons also influenced decisions about with whom not to talk about SCD. In particular, participants avoided talking if they were concerned about others’ lack of empathy/understanding/support or if they were personally concerned about being negatively labeled/stereotyped or rejected. Participants, in particular, noted how others’ (especially family members) lack of understanding of the physical and psychological issues associated with living with SCD precluding talking with them about the disease. Several individuals were also concerned (even exasperated) by others’ mislabeling SCD (as a blood disease) as HIV/AIDS or by being seen as a “drug addict” because of the use of pain medications. Of particular concern is the fact that six individuals indicated that on occasion they did not disclose their SCD to medical professionals because of concerns about stereotyping or, especially, lack of empathy.

Weighing others’ needs (based on a desire to avoid burdening loved ones—especially one’s mother and one’s own children) may also lead to SCD nondisclosure. Thus, protecting family members (or anyone in one’s social network for whom one has positive feelings) influences decisions about what and to whom to talk about SCD.

In a related study examining reasons for and against self-disclosure of HIV positive status (Derlega et al., 1998), the results were remarkably similar. The main reason cited for HIV disclosure was having an emotionally close and supportive relationship with the disclosure recipient. Seeking tangible help was also cited as a reason, as was a need for catharsis and a desire to educate others about the disease. Forewarning others to let them know what issues might arise from being HIV+ was also cited. The main reason for not disclosing HIV status was fear of rejection. Hereto, there is interesting overlap with this study, where individuals with SCD talked about how lack of understanding and empathy prevented them from sharing their SCD status with others.

Conclusion

Individuals with SCD experience considerable stress in living with this disease. Talking to others about SCD may be particularly helpful as a form of social support in alleviating stress in coping with the disease, as illustrated by the selection of the following reasons for SCD disclosure: receiving empathy/emotional support/understanding, receiving information/advice/tangible assistance, and catharsis. But SCD disclosure can also be indirectly helpful in coping with the disease. Educating others about SCD may be useful in debunking stereotypes about this disease and in making it easier for someone to provide help in a medical emergency. Forewarning others about SCD (as a reason for SCD disclosure) is also helpful in preparing others for what might happen in the future (e.g. in terms of absences from work or school or in the context of health concerns in starting or in maintaining an intimate relationship). Thus, individuals with SCD select who to talk to and who not talk to about their disease based on sociocultural and interpersonal issues that are important to them and to people in their social network.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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