Interpersonal relationships | ‘I have problems with the handshake also. 9 time[s] out of 10… I hug them softly so they can also hug me lightly, and with the handshake I say well could you shake my hand softly, don’t make it hard. And they say “well what’s wrong with you?” I went “well my hands hurt sometimes so if you grab it real hard it gonna start hurting and start throbbing me. Let’s lightly shake and we lightly shake hands or don’t at all.”’ |
‘Like in my church I talked to my deacon because people used to hug me all the time and I used to get sick all the time. Like if someone had a cold I’d get sick all the time. So I talked to my deacon, so they stopped doing the hugging in the church now for me. *Someone else: people get offended* yeah well my deacon and the preacher now we don’t do hugging in the church anymore. So I let them know because I get real sick real easy, my immune system is kinda low. If they have a cold they gonna like kiss you on the face uh mmm (negative gesture) so that [is] why they did this for me at my church.’ |
‘… then I feel, if somebody touches my hand the wrong way or touch me the wrong way, I’m like that hurts and my hardest thing is when somebody shakes your hand in church. But that’s the hardest thing for me because they’ll come and shake my hand and I’m like, if I back away they’re like “oh you’re being selfish”. They don’t know how I feel. How many other people have that same problem I have?’ |
Familial Relationships | ‘My husband and my daughter know when I don’t feel good, everything stops. They say ok you go to your quiet spot and we’ll leave you alone. I think that helps a whole lot, and then sometimes again I’m like, I want them to talk to me, I want them to come hug me…’ |
‘For us, when we’re sitting here 9 time[s] out of 10 most of us have family to support… Our families were intelligent enough to become knowledgeable about lupus and knowledgeable about our situations. We’re the lucky ones, there’s [sic] some folks out there that have been diagnosed, they don’t have that. They don’t even have the ability to find out the information for themselves, they don’t even have the resources of having a family that’s willing to do that part.’ |
‘I don’t know how it is for everybody, but I mean there’s time with my lupus, I can’t even have my kids touch me.’ |
Romantic relationships | ‘[Negotiating with others] With your spouse too, and how they feel about you having lupus. Sometimes you aren’t in the mood to… you know… and sometimes you’re tired and don’t wanna get dressed and go out. So I guess… if you stop to understand that it won’t be an issue, you being intimate with your partner.’ |
‘So it does create problems, I date, and sometimes I just have to tell my boyfriend, don’t come near me. It’s nothing wrong with you, it’s just this is one of these time[s] where you just can’t touch me, not a hug don’t touch my shoulder, don’t even accidently bump into me. Because it is that bad.’ |
‘… I think it was good to talk about it because it does affect your relationship when you have lupus. It’s something that does affect the younger people, like me, I’m young, I’m in a relationship, it didn’t affect my relationship with the guy I’m dating but I think the older people probably…’ |