Name: Immodesty Rose
Occupation: Burlesque Performer. Advocate.
When I look in the mirror (now!) I see a body that does amazing things. All the basics, of course, walk, run, climb, lift, swim…but also a body used to make art. A body that has become my canvas for self healing.
To be honest, if I take a step back, I was never someone who struggled with body image growing up. I had C-cup boobs by the time I was 12, hips and ass that are pure genetics, and a girl next door look. I’m not gorgeous, but I’m cute and have a natural sexual energy (that has been both a blessing and a curse over the years) and no problems finding dates during my adolescent years when the opinions of love interests mattered more than the opinions of - well - just about everyone else.
That is not to say I didn’t have my insecurities. I’ve always been brash and passionate which is often mistaken for argumentative, idealistic and ethical to a fault which can be difficult to reason with, and honest to the point of awkward. This did little to secure a stable middle and high school career. I was bullied, lonely, with very few friends. I didn’t get invited to birthday parties or over to my classmates houses, and I hid in the library at lunch because no one wanted to sit with me in the cafeteria. If my social awkwardness wasn’t bad enough in an all-girls school, the fact that boys liked me—direct, unashamed, bossy, and comfortable with my sexuality…yeah, high school sucked.
My body issues came much later in life.
When I was 31, I was diagnosed with HIV. For those readers out there who are unaware, having an incurable STD is the un-sexiest thing out there. Like, worse than picking your nose during sex. Once I shared my status, people changed how they saw me and thought of me. You could literally see it in their eyes—pity, disgust, sadness, confusion, and fear. Even health care providers would treat me differently. Because of stigma, discrimination, and misinformation, there are many people who won’t date someone with HIV.
- I had a guy tell me that “I can’t be with you because I have kids”.
- Or better yet: “My best friend threatened to beat me with a shovel if I continue to see you.”
- Or: “My parents don’t want to meet you.”
- A guy who freaked out on me and swore I was going to give him AIDS (to the point I was scared he was going to hit me) because we made out and I gave him a blow job. Let me add, he was a PhD candidate.
- A guy with genital herpes who shared his status, but wouldn’t go out with me again after I told him I didn’t care and that I had HIV. I recall literally saying: In this day and age, it’s safer to assume everyone has something. Apparently, only he was the only one allowed to have ‘a something’.
So, I doubted myself. Fear in the eyes of health care providers. A cousin who told me getting HIV was my fault even though it happened in the context (of what I thought!!!) of a long-term monogamous relationship. Not having anyone want to touch me romantically or sexually.
At first, there was a lot of self-anger, that my body had betrayed me, and that I had somehow missed ‘the signs’ that my partner was cheating on me. I was pregnant at the time and lost my baby. I genuinely think my body didn’t have the wherewithal to support 2 people. I was weak and sick and not diagnosed until after I ended up in the hospital for meningitis. No one thought to test me for HIV. I didn’t fit the mold, the statistics, the stereotypes. At 31, and definitely the skinniest I had been in years, I was physically weak, emotionally exhausted, mourning the loss of my baby and my relationship, and decidedly (at least according to society’s standards) not sexy.
I survived due to the senseless and overwhelming love of friends; support of my mom, sister, and brother-in-law, an amazing HIV doctor and therapist, and what I refer to as Soviet-era stoicism. Think: pragmatism and a really twisted sense of humor. Rebuilding my life following an HIV diagnosis, was a mammoth process, but I think I’ve broken it down in the following 9 steps.
Step 1: Not being contagious and rebuilding my immune system.
This took about 6 months. When I was diagnosed my viral load (the amount of HIV in my system) was very high and my CD4 count (the number of fighter cells in your immune system) was very low. HIV took hold of my body very aggressively and did a lot of damage in a very short amount of time. It took medication, rest, exercise, healthy eating, doctors’ appointments, and therapy to get my head and body back in the right place.
Step 2: Dating advice from my doctor
Seriously. When I started dating again, and realized that there were many, many people in the world that weren’t going to give me a chance, I asked him how his other patients do it. He asked me if I would have a problem dating something with diabetes or heart disease. I told him no. He told me to treat my HIV as any other chronic condition. It took a while to believe him, but the more comfortable I became with HIV, the easier it was to talk about it with other people. This didn’t mean people my dating pool suddenly got larger—there are definitely people who are still scared to touch someone with HIV much less have sex with them—but there are definitely other people who will (and have).
Step 3: Photoshoot
It all started with a Groupon for a boudoir photoshoot. I decided I wanted to do a photography series to document my story of having HIV. I figured every couple of years, I would do a photo shoot with just me and a red ribbon. By the time I’m old and gray, I’ll have lots of pictures of my ribbon and I aging together. My goal is to use the same ribbon for the entire time. I did a series at age 32 and 36. Next stop 40!!!!
Step 4: Boyfriend
Okay, this one happened by accident. I was living in Maryland. He lived in New York City. We met at a wedding. He has just gotten back from visiting family in Spain. We were the 2 out of probably a whopping 10 uncoupled people there. Our relationship is due in part to blue Caruso margaritas, and a photo booth with funny hats and accessories. We stayed up all night together. I was too scared to share my status. We exchanged numbers, and he said he’d call. I didn’t think he actually would. Two days later, he texted me. One day he asked why my last relationship ended. I disclosed it was because I had gotten an STD, one of the ones you couldn’t get rid of, but he didn’t pry and I kept getting cold feet. We dated for about a month before I said anything. I told him walking down the street on our way back from dinner. He didn’t care. I fell in love. Lucky for me, he did too. We’re still together 4 years later.
Step 5: New York School of Burlesque
For the first 3 years of my relationship, my partner and I were long distance. I would travel up to NYC on the weekends or he would come down to Baltimore. New York is home to the New York School of Burlesque and offers classes on becoming a burlesque performer. I signed up for a 6-week intro series and fell in love with the boas, gloves, sensuality, and body positivity. I knew instantly that this was something I HAD to do. The physicality of using my body to entertain, the ability to be sexual and create desire as an HIV-positive female performer, and the costumes…thank heavens for glitter and rhinestones.
Step 6: Biohazard tattoo ( a la twisted sense of humor)
I have a biohazard tattooed on my inner thigh. I tell people it is truth in advertising. This isn’t entirely true. I’m actually not contagious at this point in my disease (being undetectable and all) but that isn’t what society thinks of when they hear HIV. For me, the biohazard tattoo is about reclaiming my body. A lot of people living with HIV get biohazard tattoos. Here is a link to one article: http://www.cnn.com/2011/HEALTH/08/10/hiv.tattoos/
Step 7: Getting (nearly) naked in public
I started small by kittening for a show in upstate New York. The "kitten" is a sexy stagehand who sets up the props for the performers, and cleans up the stripper droppings in between acts. It allowed me to put my toe into this glittery world of beautiful, diverse, and (largely) kind performers and build up my confidence to doing my first striptease. After kittening, I added go-go. The go-go dancer warms up the crowd by dancing seductively prior to the performances. It’s the only performer the audience can touch by tipping on the body where the performer allows them to touch (normally a tip garter on the thigh or a bra strap). Guess what?!? The audience loved me! I could be cute and playful and sexy. It was beyond empowering. People loved my body. People wanted to touch me. People thought I was sensual and gave me tips for sharing my body with them. Woah! It was impossible not to feel beautiful and empowered and feminine.
Before I did my first full act, I went back to the NY School of Burlesque to take an act development class. There, I learned the benefit of timing, and the use of exaggerations and well-timed pauses…it is a strip TEASE after all. I also saw more body diversity than anywhere else before. When we performed as a group at the Slipper Room in NYC, the audience loved us. They didn’t care what size or color we were. We were beautiful to them, and we were beautiful to each other. What mattered was the ability to curate a 3-minute story and put it to music. Trust me, try getting mostly naked in front of an audience and have people cheer, whitsle, cat call, and clap. You feel like a million bucks. It’s a rush. It’s a flood of body positivity and self-acceptance. In that moment, you are sex embodied. You are Venus DeMilo and Marilyn Monroe and Bettie Page all rolled into one. You are unstoppable.
Step 8: Going public
I started to share my status, and brand myself as an HIV-positive performer. I told my fellow performers, I put in on my Facebook feed, and encouraged my friends to share my story with other people they knew, as appropriate. A lot of my friends have actually used my experiences to convince other people to get tested, to encourage PrEP and safer sex practices, and dispel myths and misconceptions about HIV. Some of them have told me that by sharing my story, I’ve made them more comfortable with their own STI diagnoses such as HPV or herpes and more comfortable asserting themselves in sexual situations to require their partners to use condoms or get tested.
I love that by sharing my experience, my friends are better able to advocate for their own bodies. Negotiating condom use and requiring a partner to share their STI test results before having condomless sex is not an easy conversation to have. I’d like to think that my experience has not only taught them that it is important to do so, but also that they are worth that kind of care and respect from their lovers.
Step 9: Normalcy
At this point, HIV is literally and figuratively part of my DNA. I have HIV and it has me. We’re at peace with each other. I’ve accepted my diagnosis and use it to create meaningful opportunities in my life. It helps me gauge what matters, what I’m willing to put up with, and how I set my goals. Something changes in you after a near-death experience (meningitis and delayed HIV diagnosis), and you can either use that to enhance your life or run away and live scared, shut out from all the good that is left in the world. I didn’t choose that path. I chose freedom. In all honesty, I can’t imagine my life at this point, without HIV. Maybe that is naïve, or privileged, I’m not sure. There are still challenges. I’ve had enormous obstacles in getting medication because of the health insurance system. I pick my jobs largely on the health care benefits and my ability to see specialists. There are countries I won’t (or can’t) visit because of HIV laws. But I’m at peace. My body is beautiful and I have the opportunity to showcase it in sparkly costumes, in front of audiences that love and cheer for me, in a community that encourages body diversity and crazy choreography. I’m a very lucky woman.
If you could thank one person who you’ve never had the opportunity to express gratitude for, who would it be and why?
I once told Jo Boobs Weldon, founder of the NY School of Burlesque, that if I had 20 minutes with her when we weren’t performing, that I’d love to tell her how she saved my life. I don’t mean saved my life in the sense that I was going to throw myself off the Brooklyn Bridge, but saved my life in that she gave me a chance to reclaim my body and sexuality during a time when I felt that no one would ever want me sexually or romantically ever again. I felt ugly, dirty, unlovable, damaged, and dangerous. My blood was poisonous. I was a disease vector and a contagion. I didn’t feel like a woman. Burlesque changed all those things. It allowed me to feel flirty and sexy and strong and capable. I am my own choreographer and costume designer. I am creative and strong. I am beautiful and sexy. I love my body and all the things it does. I am a performer living with HIV. I am a woman.
Photo credit unless otherwise specified: Eric from Green Bag Photography.