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Outing Your Lupus

11/18/2011

  • Christine Miserandino:

    I was just speaking with one of my friends. And she was diagnosed with lupus, and she works. And she’s just so afraid of how to tell her coworkers. You know, let’s talk about this, because I really didn’t know what to tell her!

  • 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 afterward. And then she can do like a litmus test -- am I ready to tell other people.

  • Christine:

    That’s kind of practice.

  • Pamela:

    Right. Exactly. Because it’s kind of a coming out. And you don’t want be overwhelmed by all the questions and about 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 it kind of just blurted out, just kind of in conversation.

  • Lisa Pittarelli:

    That was your subconscious way of saying, "Hey, I'm ready."

  • Pamela:

    Exactly. But 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:

    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:

    I know, for me at least, I was nervous to tell people because I didn’t want them to treat me differently.

  • Pamela:

    Absolutely.

  • Christine:

    I did not want to feel like I had the big scarlet L now. "Ooh! She's the girl with lupus." I didn’t want that to happen.

  • Lisa:

    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:

    After you told people, how did they react?

  • Pamela:

    You know what -- it was so freeing in so many ways. And I think it explained or connected the dots for a lot of people… "Well, that explains it!" Because when I'm really having a good day, you know, I’ve had it written in reviews, "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 has lupus. She's not, you know, a sociopath or something."

    (Laughter)

  • Lisa:

    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:

    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, (whisper) "I have lupus..." (Laughs) 

  • Pamela:

    Right…

  • Christine:

    OK, this is not a soap opera. This is the true story.

  • Lisa:

    No pity party.

  • Christine:

    So, if I'm not making the pity party then I feel 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:

    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:

    Like, well, 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:

    So, telling work friends is one thing. But I know, you know, discussing lupus over the Thanksgiving table (Laughs) was not really, you know, my idea of a cup of tea.

  • Lisa:

    Exactly.

  • Pamela:

    Right.

  • Christine:

    I really feel like telling family was completely different. Sometimes people have good intentions, but not the best wording. (Laughs) You know…

  • Lisa:

    It’s never what you think is going to happen. When I started 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 there'd be that extreme, and then there'd be the other extreme of they want to do everything for you.

  • Pamela:

    Luckily for me, I didn’t have to tell my whole family because our mom is the family matriarch. So, was just…

  • Christine:

    She handled that for you.

  • Pamela:

    …It was a one-stop call. And, you know, I don’t know what she told the masses. 

    (Laughter)  

    But there were no questions. They funneled their advice through her. And she decides…

  • Christine:

    You are very lucky!

  • Lisa:

    Yeah

  • Pamela:

    you know, which one has feet and which one we should take in.

  • Christine:

    You have a bouncer!

  • Pamela:

    Oh, I have a bouncer! I have a handler.

  • Christine:

    Ohh, I love that.

  • Lisa:

    That’s a good thing to have.

  • Christine:

    I love that.

  • Pamela:

    Yeah... When I told her, there was complete silence. Then it's just gasping, and you know, the whole dramatic, "Oh my God! Oh my God! Oh my God! Oh my God!" And then, you know, she went into mom plan mode. "Well we're going to get you a second, third, fourth opinion." I think she really thought if we get one person to say I don’t have it, I won’t have it.

  • Christine:

    Then it must be true.

  • Lisa:

    Denial.

  • Pamela:

    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 the 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."

    (Laughter)

    And I'm like, "Momma, you really can’t pray…."

    "Yes you can. That is wrong. That is how you got this. You were not praying enough. I bet you if you'd prayed this, you wouldn’t got this!" So….

  • Christine:

    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.

  • Pamela:

    Right.

  • Christine:

    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, you know, ripped the article out of the trash magazine that says, you know, 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.

  • Lisa:

    Yeah…

  • Pamela:

    Oh, yeah. My mom knows somebody who’s been cured of everything.

  • Christine:

    I think that sometimes we need to accept too that there 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 just… they care, but don’t know what to say at all…avoidance.

  • Pamela:

    Right.

  • Lisa:

    They don’t know how to express it.

  • Pamela:

    Right.

  • Christine:

    People are going to show love and caring their own way. It might not be the way I want, or imagined.

  • Lisa:

    And in their own time.

  • Christine:

    And in their own time, very true. So I think that kind of comes with family. That -- you know, whether it's mowing your lawn, or telling the girls to pray for you, or reading every book on the topic. You know. 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 co-workers or friends -- is that added love. You know, that emotion can drive you crazy.

    (Laughter)

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Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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