Reviewed by Louise Chang on July 01, 2011
Christine Miserandino, Author, The Spoon Theory, Founder: ButYouDontLookSick.com; Lisa Pittarelli, Living with Lupus over 10 years; Pamela Crutcher, Living with Lupus over 8 years.
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PAMELA CRUTCHER: I would explain to your friend that she should start with her family and see how they ingest it, and see what their questions are. And then she sees how she feels afterwards, and she can do a litmus test. Am I ready to tell other people?
CHRISTINE MISERANDINO: That's kind of practice.
PAMELA CRUTCHER: Right, exactly, because it's kind of a coming out. And you don't want to be overwhelmed by all the questions and by all the curiosity. For me personally, I didn't tell anybody at work until very recently, and I've been working at the same company for five years now. And I kind of just blurted it out in conversation.
LISA PITTARELLI: That was your subconscious way of saying, hey, I'm ready.
PAMELA CRUTCHER: Exactly I've been diagnosed now for eight years. So it took me eight years to be able to be comfortable with people I'm very comfortable with otherwise at work.
LISA PITTARELLI: Working in a male-dominated field in law enforcement, I didn't want all the guys to know at first, because I thought maybe they might judge me. And later on I realized it was really my own self-esteem, my internal confusion, or just not feeling like I was a whole person.
CHRISTINE MISERANDINO: I know, for me at least, I was nervous to tell people, because I didn't want them to treat me differently. I did not want to feel like I had the big scarlet L and, "Ooh, she's the girl with lupus." I didn't want that to happen.
LISA PITTARELLI: And it takes a long time sometimes. It's taken me quite a few years just to get to the point now where I want everyone to know.
CHRISTINE MISERANDINO: After you told people, how did they react?
PAMELA CRUTCHER: You know what? It was so freeing in so many ways, and I think explained or connected the dots for a lot of people. Well, that explains it. Because when I'm really having a good day, I've had it written in interviews, she's a joy to be around. But when she's having a bad day, she's someone else. So I think it was a relief. Like, oh, she just says lupus. She's not right a sociopath or something.
LISA PITTARELLI: I remember when I first told my supervisor. He said, "My mother has lupus." And then we had this whole conversation. And here I thought he was going to throw a fit. Oh, my gosh, now I've got another employee that can't do X, Y, and Z. And it wasn't like that at all.
CHRISTINE MISERANDINO: I think people take your vibe. So when I made it not a big deal, what I like to say is I don't use the sorry face. I don't go, "I have lupus." This is not a soap opera. This is the true story.
LISA PITTARELLI: No pity party.
CHRISTINE MISERANDINO: So if I'm not making the pity party, then I feel like people take your vibe. So when I kind of said it like, this is it, and then we moved on, I do feel that the people you're talking to will take the vibe from you.
LISA PITTARELLI: I also found that when I started telling friends and coworkers, not only did they start to understand and connect the dots, as you said. They would start asking me questions, or they would say they knew someone with lupus. And it really opened my eyes to how many people are affected by lupus.
PAMELA CRUTCHER: For me, I felt like I was on an island by myself. Why was I voted off the island with this disease? But there's a whole big island full of people just like you. You just haven't turned around and met them yet.
CHRISTINE MISERANDINO: So telling work friends is one thing. But I know discussing lupus over the Thanksgiving table was not really my idea of a cup of tea. I really feel like telling family was completely different. Sometimes people have good intentions, but not the best wording.
LISA PITTARELLI: It's never what you think is going to happen. When I start telling more extended family-- aunts, uncles, cousins, brothers-- it's like, oh, OK. So hey, did you watch that football game yesterday? And I'd be like, what? Did you hear what I just said? I just told you I had lupus. So it'd be that extreme, and then it'd be the other extreme of they want to do everything for you.
PAMELA CRUTCHER: Luckily for me, I didn't have to tell my whole family, because my mom is the family matriarch.
CHRISTINE MISERANDINO: She handled that for you?
PAMELA CRUTCHER: It was a one-stop call. And I don't know what she told the masses, but there were no questions. They funnel their advice through her, and she decides--
CHRISTINE MISERANDINO: You are very lucky.
PAMELA CRUTCHER: --which one has feet, and which one we should take in.
CHRISTINE MISERANDINO: You have a bouncer.
PAMELA CRUTCHER: Oh, I have a bouncer. I have a handler.
LISA PITTARELLI: That's a good thing to have.
CHRISTINE MISERANDINO: I love that.
PAMELA CRUTCHER: When I told her, there was complete silence. And then it's just gasping and the whole dramatic oh my god, oh my god, oh my god, oh my god. And then she went into mom plan mode. We're going to get a second, third, fourth opinion. I think she really thought if we'd get one person to say I don't have it, I won't have it.
CHRISTINE MISERANDINO: Then it must be true.
LISA PITTARELLI: Denial.
PAMELA CRUTCHER: Everybody else will be wrong. So we went through that, and I had to explain to her that Mom, I really do have one of to best doctors. It turned into, well, I have to call your aunts, and we have to pray about this. We'll just pray it off you. And I'm like, Mama, you really can't pray-- yes, you can! That is how you got this. You were not praying enough. I bet if you prayed this, you wouldn't have got this.
CHRISTINE MISERANDINO: And a lot of people can identify with that. A lot of people can. And I love the sentiment, and I love that that person is caring about me, and sending good thoughts, and praying for me. But at the same time, it's not going to cure it. It's not going to make it go away. And that's a hard conversation to have spiritually with someone. And I think it's harder for us, because we know that it's not going away. And I think along those lines, you get those aunts or uncles, or moms or dads, or whoever it might be who rip the article out of the trash magazine that says if you eat 12 almonds, and have a completely organic diet, and stand on your head for a few minutes a day, the blood will rush and you will feel all better and have all the energy in the world.
PAMELA CRUTCHER: Oh, yeah. My mom knows somebody who's been cured of everything.
CHRISTINE MISERANDINO: I think that sometimes we need to accept, too, that there are family members on one end of the spectrum that are going to be praying, looking for cures, looking for the exotic doctor and the magic pill. There's somewhere in the middle where people might not make a big deal at all. And then sometimes there are people that they care but don't know what to say at all. Avoidance.
LISA PITTARELLI: They don't know how to express it.
CHRISTINE MISERANDINO: People are going to show love and caring their own way. It might not be the way I want or imagine.
LISA PITTARELLI: And in their own time.
CHRISTINE MISERANDINO: And in their own time, very true. So I think that comes with family. Whether it's mowing your lawn, or telling the girls to pray for you, or reading every book on the topic, I think everyone has their own way of-- just like we had to digest it, they have to digest it. And I think the thing with family, as opposed to coworkers or friends, is that added love. That emotion can drive you crazy.