Table 3.

Implications of Social Norms for Chronic Illness Examples

	Heart disease	Breast cancer
Awareness/expectations
Doctors not concerned (due to gender or age)	“I was … fit, a 25-year vegetarian … On a tread mill [in male cardiologist's office] I got the sharp chest pain again. I was so glad because I thought, ‘Now he'll see what's going on’. He said, ‘It couldn't be your heart’ and [sent me] to a gastroenterologist. I spent the next year having every possible part of my body checked … At the end of the year, I couldn't walk from the house to the car without blinding chest pain. The last doctor said it was anxiety and prescribed antidepressants. [On my own] I went to a [women's cardiology clinic] … [cardiologist] found three blocked arteries, including one 98% blocked. She did an immediate triple bypass and saved my life.” (HD participant R)	“[My doctor said] ‘it doesn't really look like anything. Do you want to wait 6 months to just do a follow-up?’ and I was like, ‘Well I'd rather just get this out of my mind.’ And he's like, ‘Well you know biopsy's painful, and I don't know if your insurance will cover it.’ I was like, ‘Well I'd really like to do that. Can we look into it?’” (BC participant J)
Lack of/limited personal awareness	“The night before [the heart attack], I swam a mile, and noticed I had little stamina. The next day, I was sort of uncomfortable, but I went to work. I felt a little nauseated… I went to bed, but soon woke up restless and uncomfortable … The second night, I was nauseated again … I went back to sleep and woke up fine…when I finally went to the ER late that afternoon, my troponin was 15, showing I'd had a heart attack … My heart attack symptoms were typical of women, but I didn't know that … They did a grand rounds on me … because they wanted medical students to know that [some women] … present with no risk and often no [typically male] symptoms.” (HD participant O)	“And I thought breast cancer was for people who had more breast than I do, and I would joke about, when I would get mammograms that, ‘Oh, this is crazy. I should just have a chest x-ray since I'm very small-breasted.’” (BC participant D)
Public/family unaware	“Why don't women know about it? Still? What's our brand? We don't have a brand. All those pink ribbons. The [level of] heart disease awareness versus breast cancer awareness, we're not even in there. It isn't better… What can we do? Women aren't afraid of heart disease, but they see pink ribbons everywhere.” (HD participant Q)	“[Coworkers] couldn't understand why—because in the past, usually, cancer is related to like older people.” (BC participant I)
Sharing about illness
Circumstantial	“Occasionally, I'll reveal it if I think it would be helpful [to the person I'm talking with.] Otherwise, I don't share.” (HD participant O)	“I don't really like to bring it up that much either … It depends on the situation. I'm not hiding it, but it's not something I always tell everybody.” (BC participant G)
Openly/consistently	“I don't feel I have to hide it. Might as well get it off my chest. Since I'm not getting much support around here, why not get it [somewhere else?] I talk [to people] in the waiting room.” (HD participant P)	“For me, being an advocate, talking about it openly, the same way I talk about my divorce, or my car, or my job, or my dog, is a real part of my life. Just instead of hiding it.” (BC participant J)
Peer availability consequence
Comparisons (re-experiencing, self-minimizing, guilt, worry)	N/A	“I hear of another family friend get it. And then I worry about them, and then they ask me questions, so then, I re-live those moments, and I'm like, ‘Oh yeah that did kind of suck.’” (BC participant D)
		“And not a lot of people on this journey ended up my way—or even less sick than I was—that are no longer here. And I am still here … I experienced a sort of survivor's guilt because I had some friends who died.” (BC participant B)
		“It's really scary to see people who were doing fine, and then a couple months later, they're gone. And so, you're like, ‘that can happen to me, it can happen to anyone.’” (BC participant C)
Isolation	“Right off, I felt isolated. Alone. I knew no other woman who's had a heart attack. I knew two men … I was alone in the experience.” (HD participant O)	N/A
Inadequate support
No change in family behavior	“The family … my husband and the extended family, not my children. I feel so hurt over this … They think I'm making excuses [to avoid working]. Even a heart attack didn't convince them!” (HD participant K)	N/A
Fleeting support	N/A	“When I was first diagnosed, it was like, a lot of support, a lot of worry, and then now, I think that has gone away. And yeah, I don't know … but now, it's kind of going back to the status quo.” (BC participant G)
		“I think everyone was really happy to get back to normal as quickly as possible. And that made them more comfortable, which, I don't think is the happiest thing, but that's how people are, right? They just don't want to deal with it, so as quickly as you could look normal and act normal and be normal, the more they can not think about, not only your mortality but their own.” (BC participant J)
Negative health provider interactions	“My discomfort with doctors is, they don't have enough time.” (HD participant N) “The meds, especially, bother me. Before, I wouldn't even take Tylenol! In the hospital, I asked a nurse, ‘How long will I be on this?’ She looked at me incredulously and said, ‘Forever!’ That was the first time I cried.” (HD participant L)	“I just feel rushed … I usually kind of come in with a list of questions, just like rattle them off real quick. She gives me her quick answers, and it's not like she's pushing me off, but I do feel like, ‘Okay, like, I'm low priority to her probably. I'm five years out. My cancer wasn't crazy aggressive.’ … maybe I'm imagining it, but, kind of annoyed, like if you ask too many questions and really want answers … it's like, ‘I have way more important cancer patients to get to than you.’ And I mean, she's not saying that, but it's just like, ‘I'm below level here. I don't want to waste her time.’” (BC participant G)
		“I still remember calling into the nurses … that I didn't feel good and my nose is bleeding, and this and that and they would just not have as much compassion … and say, ‘You know, honey? You're going through chemo.’ Uh, yeah, thank you, I do realize that. But it's like when you're in that place—sometimes you just want someone to say, ‘Why don't you try this?’ Or just—I don't know. I guess I was searching for some sort of support.” (BC participant H)
Invalidation/minimization	“I told an employer my situation and it back-fired. Now I'm more careful.” (HD participant T)	“[She] kind of threw the cancer thing in my face, and it really hurt. She was like, ‘You know what? You have to figure out your career. You have to figure out your life. I had cancer too, and I was able to keep working afterward,’ and blah blah blah. And that really hurt.” (BC participant G)
Lack of formal support	“I was sent home with binders full of information, but nobody prepared me for the emotional roller coaster I was about to get on … Nothing about depression or the psychological side.” (HD participant S)	N/A

N/A, not applicable.