But as humble as she'd like to be, the truth is that Chris' story is unique
What truly sets Chris apart, though, is her relentless optimism. "Negativity is not an option for positives," she says. "Negativity just brings you down, so regardless of how I feel, I know I need to keep a positive attitude. If you're down, you have to just go out and bring yourself back." Is it any wonder that she's considered such an inspiring person with HIV?
What made you decide to speak out publicly about your HIV status?
It's because of the stigma, the fact that overall the stigma's still there.
What do you think is unique about your story?
I don't consider my story particularly unique, really. I'm a transgendered woman over age 50, and I have good rapport with youth and also now with seniors.
What do you think is unique about the audiences you try to reach when you speak out?
Most of the youth I talk with are considered "at-risk youth." I often speak for senior-high health classes, and the kids say "Okay, well, that can't happen to me," or "It doesn't matter anyway, 'cause there's medicine now." So I dump my pills out on a plate -- they respond to that! I dump my HIV meds on one plate, and all the medicines I take to manage side effects on another, so there's actually two plates. Then you start getting the questions! But some of that attitude comes from the media saying "HIV is a manageable disease" -- which it is, but the implication is that "manageable" means it doesn't matter anymore.
Among the seniors, we're seeing a big increase in diagnoses in my area. People are living longer, and, with Viagra, you've got senior men going out and then coming back to their girlfriends in the senior center -- and bingo! Senior women aren't thinking about protection because they can't get pregnant anymore, and HIV hasn't been fully discussed for this age group because of the assumption that they're not sexually active. That's getting better now, though.
What's the best thing about sharing your story with others? What's the worst thing?
The best thing about sharing my story is the opportunity to educate the public. The worst thing is when it all just falls on deaf ears because people are so dedicated to the "it can't happen to me" attitude. And, of course, HIV still comes with a stigma, because it's still considered a "gay disease."
How do your relatives and your partner feel about you speaking out?
My brother is fine with it; he's been involved ever since my diagnosis. Other relatives I haven't asked and I don't care! I don't have a spouse right now, so I don't have to worry about that.
What have you learned since you began speaking openly about your HIV status? How has speaking out helped you, and how have you changed as a result?
I've learned that speaking out gives you control of the virus -- you have control then, not HIV. Speaking out opens others' ears and eyes, sometimes real wide! Overall it's made me stronger; I kick butt with this virus. Knowing your status is a power.
LEARNING TO LIVE WITH HIV
Can you describe your feelings when you were first diagnosed?
I thought it was a death sentence. My first thought was, "This is not real," and my second thought was, "I'm going to die." I was in the hospital with double PCP [pneumocystis carinii pneumonia in both lungs], and my attitude changed during the two weeks I was hospitalized. I was just lying there day after day, staring at the second hand going round the clock, when this nurse came in and talked with me. She recommended a book by this cancer doctor on the power of mind over matter. My brother picked it up for me and I read it. As a result, I changed my attitude.
How long do you think it takes a person to really process an HIV diagnosis?
The length of time it takes to process the diagnosis really depends on the person, and also on where their head is at and what else is going on in their lives already. If they're struggling with addictive behaviors, for example, that might make adjusting more complicated. It just depends on the person and their makeup at the time.
Any tips for those who are newly diagnosed?
You can still lead a productive life! I always suggest a mentor program, if people want one. A mentor program puts you in touch with other people who are successfully managing life with HIV. When I was diagnosed 10 years ago, there weren't many people around you could talk to, and confidentiality issues prohibited hooking people up with other HIV-positive mentors through agencies.
Positive thinking is a big player -- negativity is not an option for positives. Becoming involved in the community helps many people maintain a positive outlook, but you can't be afraid of being out. If you're gonna stay home on the couch, you're not gonna make it; that's just not productive.
Why do you believe you acquired HIV?
Living a fast life full of risky behaviors, and thinking, "It's not going to happen to me."
What do you believe was your biggest risk factor?
Unprotected sex. When you're living fast, you don't think about protecting yourself.
Do you feel there are any risk factors or healthcare factors that are specific to transpeople?
In my area, there are few people who identify as transgender, but what I hear is that those who cannot get their hormones share injectable ones. That's a specific risk factor. As far as care goes, if you do not openly identify as transgender, your care provider is not going to know to look out for specific drug interaction concerns or what treatment plan might be best for you.
What do you think are the first things someone should do when he or she finds out they have HIV?
First thing: Seek care.
Second thing: Talk with someone who is HIV positive or knowledgeable about the virus. I'm not just talking about chatting with someone; you have to take your meds regularly, too. You can live, but there are conditions to that.
If HIV were a person, animal, or object, what would it be?
If HIV were an animal it would be an alligator, because an alligator can stay under water for a long time before coming to the surface for prey. Then it can become very violent.
What do you think is the biggest problem facing HIV-positive people today?
The biggest problem facing HIV-positive people today is the stigma. You can't just talk about it the way you talk about cancer -- there's still a real stigma around it because it's connected with sex and drugs, so people can't just let it be a virus and a disease.
What is the biggest change you'd like to see in HIV care? How about in HIV education?
Well, a lot of what we need to do is just go back to grassroots. We're almost back to where we began these days, because of the political climate. There's not enough access to care, no matter what people think. I'm upset with authority figures who say things like "No one spends more than $500 a month on medications" -- I don't know where they're getting that figure! And no one discusses all the side effects, and the fact that not everyone can access medications.
It's the same with education: We need to get back to our grassroots, back to HIV 101, and back to getting everyone tested. I'm not necessarily talking mandatory testing, but working testing into the annual physical or something -- too many people are out there passing the infection and losing their health because they don't know they have HIV, or because they do know but won't tell anyone.
When you look into your crystal ball, what do you see in the future for people living with HIV?
I would like to see it eradicated, but I don't really think that will be the case. I do believe there'll be a vaccination, maybe in the far-off future. HIV/AIDS is a big money-maker, though. There's no generic drugs yet, even though great strides have been made in medications and treatments.
How do you maintain a positive outlook?
You just do. Negativity just brings you down, so regardless of how I feel I know I need to keep a positive attitude. If you're down, you have to just go out and bring yourself back. Like Annie says: "The sun will come out tomorrow!"
What has been your overall experience with HIV treatment so far?
Challenging, but I have a really good, caring team.
What is your current CD4 count and viral load? What were they the first time you had your labs done?
My current CD4 is 660, and my viral load has been undetectable since 2001. My first CD4 was 150 and my first viral load count was 20,550.
How often do you see your doctor? How did you choose your care providers?
I see an infectious disease specialist every six months. My other providers are primary care physicians, and they're all second- or third-year residents who I might work with for two years or so before they move on. I choose them every couple years from the roster of new residents -- the faculty brings me the roster and says, "Now, that one might not be understanding, but that one would be good!" I'm their teacher as well, for both diversity and HIV care.
What kind of relationship do you have with your care providers?
It's excellent, because I get the choice! I've always had people who treated me fairly nicely and with dignity. As for the fact that I'm a transgendered woman, I'll tell them up front: "If you don't want to deal with this, don't come in the room!" When they don't know how to address me, "ma'am" or "sir" or what, I say "My name is Chris. Let's start there."
Do you have any wellness regimen that you feel helps you keep healthier?
I do meditation and prayer, and feng shui wellness -- that's where you make sure the chi around you is flowing in such a way that the positive energy comes in and the negative energy flows out.
Any adherence tips for other people on treatment?
Discuss your daily routine with your doctor, so you can work your regimen into your routine instead of the other way around. Don't stop taking your medications without consulting your physician first! Adherence isn't hard if you have good communication with your provider -- report any side effects that are causing you trouble, and see what kinds of changes you can make in order to reduce them. But you'll get resistance if you give the virus a chance to mutate, so don't take breaks without consulting with your doctor.
Any tips for dating that you can share with other people who are positive?
Be open to anyone who listens to you, and disclose immediately. Be up-front and honest, especially if you plan to get intimate, because hiding it hurts you and everyone else. You have nothing to be ashamed of.
Who would you dedicate this award to, if you could?
I dedicate it to all the people with HIV who've gone before us.
Where did you grow up?
Hershey, Pennsylvania! Chocolate town, U.S.A.. I spent a little time in Atlantic City, but almost all my life has been here in central Pennsylvania.
What did you want to be when you were a kid?
A teacher. I admire the profession, though, of course, not for the money.
What kind of work do/did your parents do?
They worked for Hershey!
What kinds of work have you done?
Well, I worked ten years for Hershey Entertainment. Fifteen years I worked with two private juvenile justice system organizations doing intakes and being a foster parent for 45 kids -- they were mostly between the ages of 14 and 18. One lives in Los Angeles now and still calls me. I was also a sales clerk. When I was diagnosed, I was working as a prep cook.
Who were the most influential people in your life, both professionally and personally?
Professionally, I'm not sure. Personally, I'll say my parents and my paternal grandparents were the most influential people in my life. My parents were very open-minded for that time period. They taught us that you judge people for who they are, not by their skin color. My grandparents took care of my brother and I when our mother was sick -- we stayed with them off and on while going through school.
What do you like to do in your spare time?
I love to garden. I do embroidery and other crafts -- I'm a crafty kind of person. I love cooking and baking, feeding the neighborhood in the summer and holding cookouts.
Do you have any pets?
I used to raise cats, but now I can't do that because of the toxoplasmosis risk.
Where do you live? Could you describe your community?
It's a highly diverse area in terms of ethnicity and race. But it's a conservative area, full of hardcore Republicans -- not an area where change is widely accepted. It's very near the capital city, Harrisburg.
If you could live anyplace besides where you live right now, where would you live?
Somewhere that's warm all year 'round.
What's the biggest adventure you've ever had?
When I won a "Positive Partnership" award from POZ Magazine, they flew us to San Francisco just for the weekend for the awards. I'd flown before, but not just for an overnight trip like that!
What are you currently reading? What book or author, if any, has had the biggest impact on you?
I'm not reading anything in particular at the moment. The book that had the biggest impact on me was the one by the cancer doctor that the nurse recommended when I was in the hospital the first time. I wish I could remember the title!
What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?
I like most anything except hard rock and rap. I like bluegrass, gospel, newer country, Ricky Martin, Yolanda Adams, Tim McGraw and that Australian gentleman Keith Urban. He's not too bad to look at! I also really like Latin music -- it's so upbeat, with such positive energy.
Anything else you'd like the people reading this article to know about you?
As long as the greater power allows, I'm going to keep fighting this disease and be a voice for those who won't talk.
Interview by Laura Jones