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Lupus: Coping With Depression

07/25/2011

  • Christine Miserandino:

    As much as we want to empower patients, and as much as we want to be positive, and we also need to be real. And depression can be a part of your lupus life. Did you feel that way?

  • Eric Calhoun:

    Initially. When lupus kind of reared, if I may, its ugly head in my life, I was at the prime, 22, in the military, expecting to be a career soldier. And all of a sudden, without any warning, lupus just kind of exploded and for a whole year I was in the hospital, but while I was in a hospital, I started losing my hair, lesions started erupting everywhere, and so I went from this, excuse the expression, this handsome young man, and all of a sudden all of these facial changes start taking place. It was extremely depressing.

  • Eric:

    AIDS was just coming on the scene, and my face is changing, my hair has fallen out, so people will equate the changes that I was experiencing with AIDS. So now I am getting this stare, oh like, "He has AIDS," right?

  • Christine:

    Right, because no one knows about lupus…

  • Eric:

    Right, right.

  • Eric:

    So I started using drugs to help deal with it, started drinking, doing everything that I could to keep the attention off of me.

  • Gaby Dominguez:

    Like you dealt with it with drugs, and alcohol.

  • Eric:

    Yeah.

  • Gaby:

    And me, I just stayed at home, just stayed away from everybody.

  • Christine:

    Isolated …

  • Gaby:

    Yes. Just didn’t want to deal with the people, the staring -- because, you know, being on high doses of steroids changes your face, they call it the "moon face." So when you're used to always getting compliments, "Oh, you’re beautiful." And then for people to stare, but you know they are not staring because you look nice today. It’s more of, "Why is her face so puffy?" or "Why does she look…?"

  • Christine:

    And a lot of people think, "Why did you gain all this weight?" And it’s not weight, it’s the medication, or you are dealing with lesions and things, it’s the lupus. It’s not like you’re doing this, and you feel out of control.

  • Eric:

    No, I was -- I felt powerless. I felt absolutely powerless. Because my concern at that time, well, "Who will want me? Who will accept me? Will there be a woman that would accept these scars?" That’s what I was dealing with.

  • Gaby:

    It broke me. I mean, I always would think, you know, "Why would people even think for a moment to -- to take their lives?"

    I mean, I really thought, of different ways of how I could make it easier just to be pain free. When you’re in constant pain every day, your medication is not helping and you’re like, "Am I going to make it tomorrow? Will I be alive? Will I be able to see my daughter grow up?"

    Our thing, with the Spanish community is the 15s – the Sweet 15s, and I am like, will I live to see my daughter -- you know -- have her Sweet 15?

  • Christine:

    It’s funny because it’s not just when you’re newly diagnosed, because I really thought I had it, I really thought I had it under control, and then I had my beautiful baby.

    And I actually had very bad postpartum and part of it was because I could not even hold my own baby, because my arms were so weak. And I couldn’t walk because of the way my body reacted to C-section.

  • All:

    Right.

  • Christine:

    And I remember thinking how horrible of a person I was to bring a baby into the world, and I am a sick mom.And I couldn’t bathe her myself. I was too afraid -- she was slippery and I remember in those first few months, feeling like I was the worst, I was the worst mother in the world, and I was so depressed, and I thought that lupus won. You know, lupus won. And then, I really, I had to seek out therapy, which is important. I had to go to a support group.

  • Eric:

    Yes, yes it is. ...

  • Christine:

    And I remember going to a support group, going I am the worst mother in the world, and three other ladies were no, no, no, I am the worst mother in the world, and I really -- I had to talk to someone about it, because it was that bad.

  • Eric:

    Right.

  • Right.

    That you do go dark places.

  • Eric:

    You do, you do.

  • Christine:

    And you do think of harming yourself. Or I really thought that maybe she was better off without me. Maybe she is better off with no mother, than a mother with lupus.

  • Gaby:

    I don’t think I ever got to that point, thinking, "Maybe they’re better off without me." Mine was more like, "It's so unfair."

  • Christine:

    Right.

  • Gaby:

    It's so unfair that I can't enjoy my kids. I can't even take them out to the park.

  • Christine:

    It doesn’t just affect you.

  • Eric:

    No, it affects the family.

  • Gaby:

    It's different.

  • Christine:

    You can be depressed and your friends and family are feeling it. It's around you.

  • Christine:

    No one knows what are you thinking until you say it, and really, once I started communicating and finding that support -- the minute you express that darkness, or that hopelessness, or whatever it is, and you share it, now it's out there.

  • Eric:

    But you have to share it with someone who understands.

  • Gaby:

    Yeah, who understands.

  • Eric:

    Yeah, because as a male, I am losing a lot of my power because I can’t control this. And a lot of the things that I want to do as a man of my house, I am not able to do those things, and that really has a psychological impact.

  • Christine:

    Oh, for sure!

  • Gaby:

    It does.

  • Eric:

    Yeah, for sure. You have to have understanding people. If you say this to another man, “Oh, there is nothing wrong with you!” You don’t understand though, it has nothing to do with how I look from the outside, this is all internal.

  • Christine:

    It’s so important I think for lupus patients to reach out to other lupus patients.

  • Eric and Gaby:

    Yes, yes.

  • Christine:

    And we can help each other.

  • Eric:

    Accept it. Don’t deny it, because once you accept it, we’re able to move beyond that now. We can live with it.

  • Gaby:

    Don’t go in your own little world, and think it's going to get better. Just you, by yourself, and it's going to be OK. No, just talk about it. It’s OK.

  • Christine:

    It's fair to say, "It's OK to be angry. It's OK to be sad." But I can get through this. We can get through this together.

  • Eric:

    Together. That's realistic.

  • Christine:

    That’s real. Real life is, "Lupus makes me angry and sad, sometimes." But the reality is it isn't going away. So I need to learn to deal with it, and I need to reach out to friends.

  • Eric:

    Exactly. That's it.

  • Christine:

    Thank you for being here.

  • Eric:

    Plug in to support groups.

  • Gaby:

    Yes, support groups.

  • Christine:

    I need to empower myself, find friends, and know that I’ll get through it.  

  • Eric and Gaby:

    Yes.

Guest Expert What is a guest expert?

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

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