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Advice for Newly Diagnosed Lupus Patients, with Christine Miserandino

03/08/2011

  • Christine Miserandino:

    So, you know girls, I was just thinking that I've had lupus 18 years. And I know, Gaby, you were two years ago. And Nancy, you were five. And Stephanie, you were 10. And I feel like, sometimes, you know, I wonder what I would have told myself when I first got diagnosed.

  • Nancy Bistritz:

    Being a newly diagnosed patient with lupus, it can be just overwhelming.

  • Stephanie Kennedy:

    And I think you have to be organized. If you're not an organized person to start with, you learn very quickly to be one.

  • Christine:

    And it seemed like a job to get organized at first, cause it’s so much. But then, the more organized I was, the easier everything was. So now, the doctor’s office wasn’t so scary. Or now I understood what can come next. And when a little symptom came up, I wasn’t so freaked out cause I said, "Oh, this could be lupus. Let me see my doctor."

  • Stephanie:

    Don't try to be super woman. You're not, and your life has changed. And it’s OK to say no. It’s OK to say no to that dinner party. It’s OK to say no, you can’t go shopping with your best friend.

  • Christine:

    It’s OK to ask for help.

  • Stephanie:

    It’s OK to say you can’t.

  • Christine:

    Now Gaby, you're the most recent. You were diagnosed… Welcome to lupus club! Congratulations! Like, did you ever hear of lupus before in your life?

  • Gaby Dominguez:

    No. No, not at all. Even being able to speak both languages and read both languages and understand it. It was difficult for me, just trying to find information or trying to understand what the doctors are telling me about lupus.

  • Christine:

    That’s probably really important, too, to bring someone with you.

  • Gaby:

    Yes.

  • Christine:

    That’s something I probably would have told a new patient. Never go alone to a doctor’s appointment.

  • Gaby:

    Yes.

  • Christine:

    Bring someone with you. That way that person can listen, can advocate. It’s just another ear. At least if another person's there, that can help.

  • Gaby:

    I didn’t take it seriously, you know, cause I was already feeling better. I thought it was maybe something related to diabetes, high blood pressure… you get rid of it.

  • Christine:

    Well, I think it’s common to think, "Oh, I'm feeling better now. It must have went away."

  • Gaby:

    Yes, that’s what it was.

  • Christine:

    And unfortunately, the reality is lupus is not curable, right now. So I think that’s important, too. Cause I know, in the Lupus Community on WebMD, there were questions like, "This is uncurable." And it does come up as a new patient, you know, “Am I going to die? I'm scared."

    So I mean, how would you answer that to like a new patient? If someone said, "Am I going to die?" Or, "I'm really scared."

  • Stephanie:

    It’s normal to be scared. We're all scared. I don’t care if you have been diagnosed for two years or 20 years. We're all scared… and it’s the fear of the unknown. But I think when you have support and you are armed with knowledge, that it makes it a little bit less scary. And, you know, medicine is making great progress. You just need to lean on each other and know that support is the way to go.

  • Nancy:

    I wished somebody had told me the importance of self-education, and really pressing health care professionals for answers. And if somebody doesn’t have an answer for you to really go after that. And also educating yourself about the process: the doctors' offices, and how they work, and insurance companies, and how they work. I often joke that managing lupus is my second full time job. And I tell my boss that.

  • Christine:

    Absolutely! I say that all the time. After all of these years, I think I should be a professional.

  • Nancy:

    Absolutely!

  • Christine:

    That’s so important to ask questions. Take that time. "Hey doctor! Don’t be in such a rush. I have a question about this." And I think you're right, that when you're armed with information -- don’t just learn that first symptom. Learn what’s coming down the pike. Learn what could, possibly… I think that you'll probably have a much more successful ride… to Lupy Land! (Laughter)

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

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