The Pillow Talk We Don’t Talk About: Living with a Sexually Transmitted Infection

In her final year of university, Ryerson graduate Emma* discovered she had HPV. Although she struggled with this revelation for some time, she’s grown to accept this part of her and she doesn’t let it define her. This is Emma’s story.

By Jessica Huynh, Storyteller for RU Student Life

In late November 2016, Emma* (now 23) met someone she felt mentally connected with. They spent everyday together for almost three weeks, meeting each other after class to study, hangout, cuddle, and go on cute dates. Finally, after a buildup of tension, they had their first kiss. She knew, at that exact moment, she wanted something more from him. She had to be honest with him and tell him something she had never told anyone before. Emma needed to know if what she was about to tell him would be a deal breaker. She liked him — a lot, but she was also prepared to hear him say “no”. Nervously, Emma told him she had HPV, a sexually transmitted infection** …

Three months prior, Emma entered her final year at Ryerson University. She had just got back from a vacation and was ready for the semester to begin. When she returned from her trip, she realized she had left her NuvaRing, a contraceptive vaginal ring, in for two weeks longer than intended. It was Emma’s first time on this form of birth control, so when she felt small, painless bumps near her vaginal opening, she wasn’t alarmed. “I wasn’t itchy. I wasn’t hurting. It was just bumps. I thought it was just irritation from my tampons,” she explained. “When it was time to put in a new ring in, I felt the bumps again. I immediately went to the walk-in clinic to get it checked out.”

The male doctor who saw Emma took a look down there for three seconds before telling her she had genital warts caused by Human Papillomavirus (HPV). He gave her a pamphlet and told her to contact every sexual partner she’s had in the last six months to tell them to get tested. He also suggested she book an appointment with her family doctor for more information.

“When I found out, I was like, ‘Fuck that asshole who gave it to me!’,” Emma recalled. “I instinctively assumed it was my last [sexual] partner, but the doctor told me that HPV can stay dormant for a long time. It could have been my first sexual partner or even my third [who could have gave it to me]. He explained to me that HPV often goes undetected in guys.”

The doctor was right. According to the Centers for Disease Control and Prevention, most people who have HPV never develop any symptoms. That means many people have HPV and don’t know it. Although men can develop HPV-related cancer (less than 1% in Canada), women are of greater risk of contracting a more serious-strain of HPV. In the United States, nearly 12,000 women are diagnosed with HPV-related cervical cancer each year, and 4,000 of them will result in death (even with testing and treatment!). Comparatively, roughly 1,900 American men will be diagnosed with HPV-related cancer. In layman’s terms, men are more likely to be carriers than women.

Emma contracted an unidentifiable but low-risk, non-cancerous strain of HPV.

Emma couldn’t wrap her head around the unexpected news. Why was this happening to her now of all times? She was in the midst of moving apartments, had just got out of a casual relationship, and was starting her final year of school. “I was really stressed out,” Emma remembered. “The doctor told me I could buy cream to help get rid of the bumps, but when I went to the pharmacy, it was back-ordered for two months! I felt like I was stuck. I asked the pharmacist how much the cream was and they said it was $560! When they told me that, that added to my stress. As a student, I didn’t have that kind of money laying around. Now I had stress about the semester, stress about contacting my [previous] sexual partners, stress about how to get this money, and stress about these bumps I couldn’t get rid of.”

Imiquimod Cream is a prescription medication used to treat HPV genital warts. Brands like Aldara can cost upwards of $700 according to the American Academy of Family Physicians. Aldara is covered by the Exceptional Access Program EAP but not the Ontario Drug Benefit (ODB). (Image Courtesy of IndiaMarket)

The only reassurance Emma had was knowing that the cream was back-ordered (“It meant it was in high-demand and that I wasn’t the only one who was dealing with this”). Although she didn’t know at the time (but would later learn), HPV is the most common sexually transmitted infection in Canada. The Government of Canada estimates that as many as 75% of sexually active individuals will have HPV in their lifetime. Approximately 79 million of Americans live with HPV. At any given time, 1 in 100 sexually active American adults have genital warts — and this number only takes into account individuals who reported their condition to practitioners.

Confused and directionless, Emma didn’t know what to do next. She left the pharmacy and went to class feeling defeated. She was unable to focus the entire time. She knew she had to call her previous sexual partners and break the news.

Without any support, Emma called her previous sexual partners and informed them she had HPV and urged them to go get tested.

“The first person I called was tested two weeks prior and said it came back negative, but my other two sexual partners took it really hard. Both of them blamed me for the HPV. They were saying stuff like, ‘Emma, who else did you fuck?’ ‘Emma, why did you do this to me?’ ‘Emma, were you cheating on me?’ This entire time I was getting tested regularly too. I had to explain to them that it stays dormant and that you can get HPV whether you use protection or not.”

HPV can be passed through oral, anal, and vaginal sex, as well as close skin-to-skin contact. In fact, an individual with HPV can transmit the infection even with protection and no visible signs or symptoms. Most people only find out they have HPV when they have a “break out” or develop a more serious problem such as cancer. The strains of HPV that cause genital warts do not cause cancer.

When the doctor told Emma that she could have contracted HPV from any one of her past sexual partners, that eased her mind. “I had the sense to realize no particular person was at fault. But since I was one person calling these guys to tell them about the HPV, it was easier to blame me and pin it on me than realize men can be carriers. The two guys never overlapped and neither of them had an outbreak, but they had an ‘it-could-happen-at-anytime’ mentality. I wasn’t putting the blame on them when I called, but they felt like I was.”

“Even if I hadn’t passed it onto them, I still felt bad that I was the one that had to tell them,” Emma confessed. “And if I did pass it on, I would have appreciated if they respected me and realized that I was also going through something [difficult] too. I was in the same boat as them, but they didn’t respect me which made [the situation] harder.”

In hindsight, Emma realized that contacting and dealing with the anger of those two previous partners took a toll on her mental health. She did not receive support or resources on how to disclose to partners. Soon, she spiraled into a deep depression.

After discovering she had HPV, Emma spiralled into a depression. She eventually went on medication under the guidance of her family doctor.

When Emma finally went to her family doctor, she learned that the cream wasn’t her only option, nor would it have been effective. “My doctor was really mad because the walk-in doctor didn’t follow the proper process. She also told me, ‘Even if you used the cream it more than likely would not help you because of the location of your warts’.” There was a treatment available — Emma could have the warts burned off, at no cost. Overwhelmed, Emma couldn’t help but break down in tears. She admitted to her doctor that she was severely depressed. Emma said her doctor talked to her “not as a patient but as a woman-to-another-woman” and suggested she consider anti-depressants as an option. Not wanting to rely on anti-depressants (Emma reflected later that this was because of stigma), Emma declined.

Gradually, her mental health began to decline and she found herself dabbling into drugs and alcohol as a coping mechanism. She was getting by in her classes, but found herself moving through the motions, emotionless. “I didn’t feel anything,” Emma recalled. “I wasn’t sad or mad. I was just anxious and numb. This went on for a couple of months until I finally talked to my doctor about going on medication.”

As she started to accept this part of her, Emma realized she longed for companionship. She wanted someone to understand her and accept her as she was. So, when she finally met someone she felt strong feelings for, she was nervous to disclose to him — the first stranger and first romantic interest since finding out she had HPV — that she has a sexually transmitted infection.

“Yes, dating will change for me but it won’t prevent me from dating,” Emma declared confidently.

“I told him to talk to his doctor and let me know if [me having HPV] was a deal breaker because we had to figure it out now before we continued seeing each other,” Emma told her partner at the time. “Long story short, the guy wasn’t okay with it and it broke my heart. He was the first guy I met after the HPV thing that I opened up to and he rejected me. When I told him, I had already prepared myself to hear him say no, but what I didn’t prepare myself for was how I would feel about myself afterwards.”

Emma was heartbroken. She began to question herself and wonder if she was worthy of having someone in her life. She felt as though she had robbed herself from happiness because she liked this guy so much. From that experience, Emma started to doubt if she would be able to date again.

“It was hard for me to see the good in my experience and appreciate how far I had come because I thought no matter what I did in life, no matter who I am as a person or what my achievements were, it all boiled down to this: me having an STD. People will only see this. I hated myself for that because I felt as though I had more to offer the world than my body, but that’s what [the rejection] made me feel. It made me feel that if I couldn’t offer my body in a clean matter, then I wasn’t a good person. The struggle of that was really difficult, but then it got better.”

Determined to move forward and not dwell on rejection, Emma focused on her final exams. Feeling more confident, she went on her second date post-HPV reveal. Her date was slightly older than her. On their first date, to her surprised, he asked her if she was HPV vaccinated and asked her how much knew about HPV. Curious as to why he was asking, he confessed to her that he had HPV.

“It was really awesome to meet someone who had HPV and who had dealt with it for a few years now,” Emma shared. “He gave me really good advice and told me it doesn’t define you. He told me that if people judge me, then it’s their fault and they are missing out on someone great. He told me he never experienced rejection from it but that may be because he’s male. ‘There’s a stigma towards women who have STDs because she’s [perceived as] a slut.’ He taught me how to approach people and tell them I have HPV. It was nice to have someone who reassured me that this wasn’t the end of me dating people and meeting people. Yes, dating will change for me but it won’t prevent me from dating. He was a blessing in disguise. Ever since that more people have been accepting [of me having HPV] than not in my dating life.”

On an unexpected Tinder date, Emma met someone who had HPV and learned from him how to navigate the dating world as someone with a sexually transmitted infection.

Today, living with HPV no longer gives Emma anxiety. “Yes, I live with it and yes, at the time it was hard to cope and go on medication for my depression, but ultimately it made me understand me and the different types of STIs that are around the world. If someone is going to judge me for it then so be it. That person isn’t worth my time.”

With that mentality, she’s realized that a great way to weed out potential partners is how they react when she tells them. Emma is focusing on living her best life as a post-graduate, undefined by this small aspect about her.

For more information on sexual health, visit the Ryerson’s Health and Wellness webpage. You can book appointments through the Medical Centre and receive counselling from professionals.

* Name has been changed to protect the identity of the individual.

** Between sexually transmitted infection (STI) and sexually transmitted disease (STD), STI is the more favourable terminology to use as people who become infected don’t always develop a disease.