November 20, 2013
Falling in love when you have HIV is terrain that can be very hard to map. Whether it's with our family or in a romantic relationship, love is a central motivator in so many of our lives, and Andrea de Lange's journey of love is a lesson for us all.
Andrea has come a long way since her initial diagnosis. She has repaired several family relationships through education, and turned down an appearance on Oprah. After dealing with several partners, including a former husband, who never made her feel quite right regarding her HIV status, she met and fell in love all over again with a childhood friend at their high school reunion. Now, she sees that being in love and feeling "normal" all start with the ability to love yourself and recognize that you deserve someone who loves you for you, HIV and all.
This interview was conducted in October 2012.
Can you start by talking a little bit about how you found out you were HIV positive, and what year it was?
I found out way back in 1987 that I was HIV positive. I was actually told I had ARC [AIDS-related complex] at the time. ARC should really now stand for "archaic term," because it got fizzled out a long time ago. But when I was diagnosed, I had swollen lymph nodes, and that was considered a symptom. But I didn't have any serious opportunistic infections, or things that would qualify as an AIDS diagnosis.
I got tested as part of a screening with a new physician to try to figure out why my lymph nodes had been swollen for two years. Actually, two years earlier, '85, I went through a conversion illness, where my lymph nodes became swollen. I had a rash all over, and chills, and a fever, and the whole thing. The doctor I was seeing at the time thought I might have Hodgkin's disease, a type of lymphoma; so I had three lymph nodes cut out and biopsied, sniffed out, looking for cancer. That was negative and so then there really wasn't any answer for why this happened to me.
Two years later, I found out that I tested positive for Epstein-Barr virus, which is kind of like a chronic form of mono. And directly across the street from the other doctor was this Dr. Tilkian, who specialized in Epstein-Barr.
So I went to him. On the very first visit he said, "Why don't we rule out this possibility?" It was just a physical to find out what's going on. I never gave the test a second thought.
I'd actually started getting vitamin shots through their office (B12, magnesium and folic acid shots). I went back to get a shot two weeks later and that's when I was told. He told me that I had ARC.
What did you think and feel when you first heard that news?
It was surreal. It was very surreal. At the same time that I found out I was diagnosed, I was going to school. I was in college full-time. I was in a psychology class where we were actually studying HIV and AIDS in the class at that time. I remember sitting in the class and learning about what was going on, learning about this pandemic, and thinking how awful this is. And, thank goodness, it has nothing to do with me -- it's terrible, but I'm so glad I'm not part of that world.
And then I found out I was part of that world. One of my biggest concerns was, even before worrying about my own health, I was worried that I had infected my boyfriend, who had been living with me for a year, at that point.
A lot of my emotions went into the idea of: Did I infect this guy? I hope I did not infect him.
At the time, did you have a sense of how you might have become positive?
Oh, yeah. I know exactly how I was infected. What do they say? Denial is more than a river in Egypt. Yeah. I had a boyfriend who I met in 12th grade at an after-school job, working in a hospital. We worked in the dietary department. It turns out that he was shooting speed, crystal meth, and actually selling it, too. His sister was kind of higher up, and lived with a guy who cooked up the stuff.
In good ol' superficial Los Angeles, all this guy, Joe, had to say to me was, "Oh, I think you need to lose some weight." That was the way to get me sucked into the world of crystal -- crank -- because it is really all about looks. It's really hard; for a young person growing up there, it's very difficult.
As an older person, now, I don't let it get to me. But growing up there was hard. When somebody criticized my looks, because I didn't look like the ideal tall, thin, skinny, blond chick, it got to me.
So I was introduced to snorting speed, snorting crank, through this guy. Never shot it. But unbeknownst to me, he was shooting it. He kept it a secret. I found out by accident that he was shooting it. Actually, after like four years of being in a relationship with this guy, having unprotected sex with him, I found out that he was shooting it. But at the time I found out, I didn't know about AIDS. I was freaked out, but I didn't know anything about AIDS at the time.
Basically, it was having unprotected sex with an injection drug user.
Is this the partner that you were with when you tested positive?
No. The original partner that infected me: I had broken up with him, which was not easy. I remember kicking him out of my apartment, and him literally kicking me.
I started to go to school soon after that. I was working in an old-age home as an activity director. That's where I ended up meeting the son of a woman who worked there, and he moved in with me. At the time that I got tested, I had just started college -- this is like a year later. And he had been living with me that year. We were having unprotected sex, also.
So, different person. A guy who was actually calling me his soul mate. You know, we used the word soul mate. I know. I really saw what this guy was all about when I found out about the diagnosis. And it wasn't pretty.
Was he the first person that you told?
Yes. He was the first person. He was also going to school. He was going to UCLA at the time. Came home, and I told him right away. I was thinking, we should get a second opinion. We should get this test done again.
At that time, I think it was the Western blot and the ELISA test. If the first test was positive, they did the more accurate ELISA test -- which was, I think, pretty accurate. [Editor's note: In terms of HIV testing order and accuracy, it's actually the other way around.]
We went and I got tested again. I got tested and sure enough, I was positive. He wasn't infected. But for the next two years that I lived with this guy, he treated me like a leper every day. It was awful.
At the time, I wasn't empowered enough to kick his ass out. I was thinking it's not going to get any better than this. I don't want to have to be limited to a certain group of people that are not the people I normally would choose to date, you know? Closeted gay men, or injection drug users, or all these groups which were actually a lot more closely associated with HIV back in the early '80s, anyway.
I didn't want to be limited to that group. I thought, well, this guy is a complete jerk. He's treating me like a complete jerk. And not only are we not having any sex, he's not touching me; he's not using the same soap, or towels, or food, or anything. And he'd actually become more verbally and physically abusive. I put up with it for two years and then finally I found out he was screwing around with different women, and finally kicked him out. That was a glorious day.
Indeed. Congratulations on that.
Was there not education available around how HIV was transmitted, or how "ARC" was transmitted? Or was he just ignorant to it?
He was very fearful. He was a very smart guy, gifted guy. These days he's a child psychologist and, I think, has written books, and blah, blah, blah. But he just was very fearful.
His father had polio and was in a wheelchair. His parents were divorced. But he grew up with a dad who had polio. I think that played a huge part in how he reacted.
I went with my boyfriend to AIDS Project Los Angeles, and we met with a woman who was an HIV education specialist there. We talked for over an hour, the three of us. She went over all the facts about transmission: how you're infected; how you're not infected; no, you don't have to be worried about saliva. Again, this was very early on. It was 1987, very early on in the pandemic spectrum. Not as much was known about things, and there was a lot of uncertainty.
However, she was able to say, "No. You cannot get this through saliva. If you use condoms consistently, every time you have sex, then the chance of transmitting the virus, especially woman to man, is extremely low, infinitesimal."
Well, he took that nine gazillion and ninety-nine-to-one-percent-chance thing and he jumped on that one percent. He's like, "Well, that could be us." He just had a lot of fear. It really didn't matter that he was hearing facts from someone. He just had a lot of fear in his head, I guess, because he grew up with somebody whose life was totally changed by a virus. His dad was in a wheelchair. Even though he could cognitively absorb the information, he wasnt believing it -- or it didn't change his fears about it.
So, basically, it didn't do any good, as far as I was concerned. I thought it was going to help alleviate his fears and we could have somewhat of a normal relationship again. He was just so awful and so ... not just afraid, but he was actually verbally abusive and degrading. He even said things like calling me a leper at the time -- a diseased leper. It was just awful.
I really got to see what this person was like after finding out about my HIV status. Had I hypothetically married this guy without finding out I was positive, I'm sure I would find out he was a total jerk in other ways -- if I even got that far, to marry him. I wouldn't want to marry someone like him, even if I never tested positive and we were in that relationship. Knowing later on all about what he was all about: That's not somebody that I would want to be with, even casually.
Had you told other people about your diagnosis around that time? If so, how did you start those conversations?
I had gotten involved, right from the start -- the media department from AIDS Project Los Angeles really latched onto me, because I represented a face, a person that totally broke the stereotypes that people have of who is infected. I wasn't a gay man. I was a heterosexual woman. I was in college at the time. I was a student. I was intelligent. I was not homeless. I was not a drug user at that time -- it had been many years since I had stopped. And regardless, I had never been an injection drug user. I wasn't a "prostitute." I wasn't this, that, or all these other stereotypes that people had about who was infected. So the media department really liked me.
Whenever they'd get calls from talk shows or different things, they would suggest me for a lot of those gigs. Actually, they were nonpaying gigs for a while, until I was on this show -- I think it was called Hour Magazine. In any case, there was a woman who was on a panel with me who was a Ph.D. She worked for the Rand Corporation and she had a show on the Playboy Channel all about sex. It was actually this really intelligent, good show, but the only entity that would put it on was the Playboy Channel.
She said to me, "You should get paid. They are exploiting you if you're not getting paid. They have money to pay you. They should pay you."
That changed my feelings about it. Later on, I was asked to go on Oprah. If I had gone on Oprah, I would not use any disguise, or wigs, or the things that I was doing before on Geraldo and Hour Magazine and different things. I thought, if I go on Oprah, it would have been with this other woman who ... I forget. Alison, or something? This woman from Long Island, New York. Is it Alison Gertz?
She died, but she was very vocal. She said, "I got infected" -- like the first time she had sex, and everything. I would have gone on the same show with her and she was out with her status. So I wasn't going to be wearing a disguise, a wig and big sunglasses. I wasn't going to do that if I was on.
I wouldn't have done that, anyway, if I went on Oprah. But my brother, who was a paralegal at the time, said, "I'll be your manager. I'll talk to them." But she didn't pay her guests and they wouldn't budge. So my brother made the decision for me that I wasn't going to do it. He said to them, "There's too much for her to risk. This is a big, a really big, deal."
I think she pays her professional guests -- the expert guests. But, no. So I didn't do it.
I just got very involved in working with the community and doing education, and even decided I wanted to do social work with people -- but I was an art major at the time, when I started college and decided I wanted to work with other positive people and help them survive this thing.
It sounds as if you had already told your family. How did that come about? Did you tell them immediately?
I tried to wait as long as I could to tell my parents. I thought, I'm not going to tell them. I'm going to go as long as I can without telling them.
So that was two weeks. My dad, right away, just hugged me. My dad and I are very close. He just hugged me. It never changed anything about how he treated me or anything. My mom, who is also very cool and open-minded -- both my parents are very liberal, and I was raised that way -- she wasn't educated about transmission and how you can and cannot get infected. So there was a time early on after I told her that we were in a restaurant, and she accidentally drank out of my water glass. And she flipped out. She thought I was trying to kill her. She's like, "You saw me drink out of your glass; you didn't say anything. You're trying to kill me" -- all this stuff.
We've always had a kind of love-hate relationship, like a lot of mothers and daughters. But I said to her, "Mom, you've got to get educated. You do not get infected from drinking somebody's water, water glasses, or water fountains. That's not how you get infected." To her credit: She was in college at the time, working on her master's as a speech pathologist, and went into the school library and got a lot of information, got very educated about it, and became cool after that.
So I was lucky that she was willing to get educated and learn these things.
My best friend to this day, my friend Karen: We met as art majors in school and we became really close friends right away. I didn't tell her about the HIV until almost a year later. She said, "I'm going to be walking in the L.A. AIDS Walk. Will you sponsor me?"
I said, "Oh, well, speaking of AIDS, I've got something to tell you." And I told her. And she was wonderful. She's like, "Why did you wait so long to tell me?" I don't know. I guess I just didn't want our friendship to be based on that, or have that component as part of it from the start. I wanted to just not have that as an issue.
In terms of dating and relationships: I know that in '89 you got this terrible man out of your life. What's your dating and relationship life been like since then?
Dating and relationships. This subject was so powerful and significant to me in my life, as a person in their early 20s, finding out their status, that I ended up writing my master's thesis on the topic. The title of my thesis was "The Effects of an HIV-Positive Diagnosis on Heterosexual Women's Intimate Relationships." I presented it at the International AIDS Conference in Vancouver in 1996. I was on a social work panel.
I picked this topic because it was so near and dear to me, even though I wasn't one of the women that was part of the study that I interviewed. But I really wanted to find out more about how other positive women were coping with their relationships -- their intimate relationships -- after their diagnosis.
It was a qualitative study, as opposed to quantitative. So, there was not a huge group of people, maybe 12 women or so, that I interviewed. And it was cool. I got a lot of different types of responses from people. I had been in a relationship. Like I mentioned earlier, I didn't want to limit myself to just dating HIV-positive men. So, pretty much from the start with dating, after that other boyfriend moved out, I didn't look to the HIV world for a boyfriend.
My next boyfriend after that was studying music at my school, Cal State Northridge, and played classical guitar. He was actually a professional guitarist/musician. I saw him play and I was smitten. And he accepted the HIV. We were in a two-year relationship. There were other things that I think broke up the relationship, other than the HIV. That wasn't really a big part of it. It was more like he was kind of commitment phobic, and he'd do the push-pull commitment dance.
After that, I had a six-month relationship with this guy who I'd met doing one of my internships toward my marriage, family and child counseling license. You have to do 3,000 hours of work in different categories to be eligible to get your license and I was working in a mental hospital at the time. He was there as a nursing assistant.
This guy was really hot -- you know, physically, chemistry and everything -- but like the original boyfriend that infected me, he had this whole dark side to him, dark bad-boy thing. That was not a good relationship. He was actually kind of misogynistic. Yes, he was hot. Yes, we had great sex. But it was not good emotionally to be in that relationship.
And then, let's see. My ex-husband is not positive. He was negative. I met him working on the set of the movie Ed Wood. I had a '52 Packard that I was using in the movie and he was Johnny Depp's bodyguard. I was like, Get to know the bodyguard; get to know Johnny. I ended up marrying the bodyguard, not Johnny. I did meet Johnny Depp. But, yeah, we were married for three years.
I think, more than the HIV -- actually, the HIV did play a part in that relationship breaking up, because he did not want to use condoms. There was also a big age difference. He was 15 years older than me. He's Chicano and I think some of the not wanting to wear condoms may be a big part of that culture. And then the 15-year age difference -- he's actually a Vietnam vet -- I think also worked against our marriage. But, yeah, that was my marriage.
I did date an HIV-positive guy later on -- actually, through this relationship, I became infected with HPV [human papillomavirus]. It turns out he had a whole host of things -- I called him the 4-H Club, because it was like HIV, hemophilia, hepatitis, HPV -- that I wasn't aware of. At the time that I met this guy, it was a very bad period for me emotionally. I was going through a little mini nervous breakdown. I hooked up with this guy at a conference in San Diego, a heterosexual HIV conference. And he didn't use a condom. At the time, I was not being assertive, to insist on it.
In any case, the HPV that I contracted through unprotected sex with him is what led to my having cancer four years ago. I had an internal form of squamous cell carcinoma, colorectal cancer. And it started with the HPV that I got from him. I almost died from that.
I'd lived, ironically, so long, doing so well with HIV, which everybody thought was a sure death sentence back in the day. And then made this dumb mistake, and almost died as a result of that. It was stage 3, and I went through chemo and radiation.
What year was that?
That was 2008.
How has your cancer-related health been recently?
I've been cancer free for four years. I think Oct. 13, 2008, was the day I had my last treatment. It was either the date I had my last treatment or the day I found out that I was cancer free, which was right around the same time I ended treatment. The five-year mark is the first big milestone in being cancer-free. But four years: I'm feeling pretty good about it. [Editor's note: Andrea recently hit that five-year mark!]
Talk a little bit about your health generally -- how it's been in relation to HIV, and what you do to keep healthy.
OK. Health-wise, I am on the meds these days. I was a holdout for a long, long, long time. Actually, a surprisingly long time, considering I found out I was HIV positive in 1987. The first time I tried a cocktail was 2001, many years later, and I was only on that first regimen for six weeks.
I was actually training for the National AIDS Marathon at the time, in Chicago, to raise money for AIDS programs. My T cells were down and viral load was up. I thought, if I want to do this marathon, maybe I should go on these meds. I ended up feeling way crappier on the meds.
Do you remember what regimen you were on at the time, or what you started with?
Yeah. I was on Combivir, which has AZT in it [and 3TC]. I was always such a big anti-AZT person before that. I even had got up on a soapbox and talked about how bad I thought that stuff was. Because, in the beginning with monotherapy, I saw my peers in their 20s taking this stuff around the clock, every six hours, in huge dosages. I would meet them at a conference or seminar, whatever, and I'd be going to their funeral four or five months later. So I avoided that.
The specialist doctor who I saw for Epstein-Barr was very, very cool. I was still getting these shots (B12, magnesium and folic acid) every other week, and was doing that for eight years, till I moved to New Mexico with my first husband. I actually continued to do it, and learned how to give myself the shots.
I had pressure from a lot of my peers to go on the meds for a long time. People were actually angry with me because I wasn't on the meds like they were doing. I think part of that anger was, I was doing well. I was healthy. I think that's where a lot of the anger came from. I think there was a lot of jealousy involved. It was a huge thing for a long time.
The first regimen that I was on was Viramune [nevirapine] and Combivir. I had nausea and headaches, and I didn't feel good at all. Then I went off that. The regimen I'm on now is Intelence [etravirine, TMC125], Isentress [raltegravir] and Epzicom [abacavir/3TC, Kivexa]. This has been a great regimen for me. I've been doing really well. At the very beginning, I had some problems with nausea, but they went away.
What led you to the decision to start taking that regimen, ultimately, and to start taking HIV meds again?
Starting again had to do with my T-cell count. And I had seen my viral load go up and down. I had seen it get as high as 300,000 when I wasn't on the meds, during a very stressful period in my life. I had always said to myself, if my T cells go under 200, I'm just going to go on these meds. I'm not going to be a fool; I'm just going to do it.
And it actually happened where they hit 200 and under that, where I still did not go on the meds. I went to North Carolina, did ozone therapy for three weeks, and changed my health around. In 1995, I did that. So I held out. When my T cells hovered in the 200s I did go on the meds.
When I started my first regimen, in 2001, the first six weeks, it was just a difficult decision to start after going so long without starting and arguing with people. And then I felt like crap and I was training for this marathon, and so I went off them. It felt wonderful. Because my viral load was lowered. In that six weeks, it was actually lowered a huge amount.
Switching gears back again: When and where did you meet your current husband?
Oh, I love that you asked me that! My current husband and I re-met each other at our 20-year high school reunion. We've known each other since the fourth grade. We even had a little fifth-grade romance for about five days. It was the last week of fifth grade at that elementary school. The fifth grade went to the Santa Monica Mountains for a program called "Outdoor Education," and stayed in cabins. It was romantic.
Then it was summer, and then we started middle school. Over the summer, the romance didn't last. We didn't stay in touch. We were little kids. We didn't drive, or anything. So we had classes together: middle school, high school, same grade, everything. Didn't really talk to each other much, you know, if at all.
Then we graduated. He got married to a Nicaraguan woman, and I got married to a Chicano guy. He had a daughter. We both divorced after three years, which was both of our choices. Our 10-year reunion came and went. Neither of us wanted to go, because neither of us liked the school -- we, in fact, couldn't stand it.
And then the 20-year reunion came along. We were both divorced at that time.
We had people talk us into going, so we both went. When we were there -- this is kind of funny -- I was in the buffet line at the reunion. Robert was behind me in line, so I wasn't facing him. But he saw me, and he goes, "Andrea!" I thought, Wow, whoever this is knows me by my butt. My booty has got them recognizing me.
And, sure enough, he copped to it. Yeah. All these years later. I turned around. "Robert!" And immediately, when I saw him, both of us felt like we were back in that fifth-grade romance again. It was the coolest thing, and we've been together ever since then. We're going on our 10-year wedding anniversary in December.
Thank you. Thanks.
It sounds as if he's been very supportive of your work, and fine with your HIV status. Has that been true since the beginning?
Once he made the decision, after entering a sexual relationship with me -- because we were dating and stuff, and I was holding off as long as I could to even tell him I was positive, which was about two weeks. We were going on a lot of dates, and he was trying to be really romantic. And I was giving these mixed messages because I liked him, but I had earlier experiences with even kissing a guy before I told him and then they freaked out. So I was really careful.
And then I told him after two weeks. He was very compassionate and sweet, right from the start. At the time I told him, he had been wondering, "Are you a lesbian? Do you even like me?" So when I told him, he was like, "Oh, that had to have been so hard for you all this time to have to keep that a secret." But he didn't say right away that he wanted to continue the relationship.
Around that same time, this earlier boyfriend who infected me with HPV, who I'd broken up with, was calling me all the time, trying to get back together. He wanted to marry me. One time, Robert was at my house and on the answering machine, Dan, this guy, was just leaving this long, drunken, "I want you back" message.
Well, that was kind of the day that Robert decided, "Yeah, I'm going to go for this." And he really has been wonderful, right from the start. It's the first time I've been in a relationship with an HIV-negative man (which was almost all of my relationships) where my HIV status has not been an issue at all. I feel normal. I feel like how I felt pre-HIV, when I felt like a normal person. So it's awesome. I love it.
This transcript has been edited for clarity.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.