Last Updated on July 29, 2021 by Debra Rose Wilson, PhD, MSN, RN, IBCLC, AHN-BC, CHT
So far, The STI Project’s spent a lot of time writing about the positive aspects around contracting an STI/STD (See: The Top 5 Reasons Living With an STI/STD Has Positively Influenced My Life, for example), and how it doesn’t have to hinder opportunities and relationships, but to be truly authentic as I’m encouraging all of you to be, I have to disclose the things that have sucked as well (See: A Healthy Helping of STI/STD Hate, for example).
Let’s face it, an STI isn’t lollipops and rainbows all of the time. Maybe they should be more appropriately compared to lemon drops – incredibly sour with a residual sweetness?!
In any case, I’m not seeing a line outside of my door of people eager and anxious to sign up for genital herpes or to ask me where they can get their HPV, chancroid, scabies, gonorrhea, etc. Can you imagine?
This is a story about being diagnosed with an STI for the first time.
At 15, I became sexually active in the traditional sense (vaginal intercourse), however, I’d “fooled around” by engaging in oral and manual sex prior to having vaginal intercourse too.
Consequently, I’m still unsure if I contracted herpes from oral sex or vaginal intercourse, and I’m also not certain who to blame – but maybe that’s the point?! The blaming is unnecessary as it serves no beneficial purpose – rather, it provides me an escape goat for having been ignorant and somewhat irresponsible with my sexual health (I didn’t practice comprehensive safer sex).
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When I chose to share my body intimately with someone else, I was taking a risk. Often, the extent of the risks we take are unknown to both parties, especially when considering the most common STI symptom is no symptom at all. So, it’s even likely the person who originally gave me genital herpes was completely unaware they had it.
At 16, I was diagnosed.
In the week leading up to the infamous doctor visit, it was warm out, and I was becoming increasingly uncomfortable in the genital area. I thought I might be having an allergic reaction to laundry soap, a bout of poison ivy, or any number of other things that were running through my head when I finally gathered the courage to show my mom the area.
She promptly took me to our family doctor.
She had an inkling of what was about to happen next, yet, she refrained from saying anything specific in hopes her own fears would be dispelled.
After having moved from a very urban area in the heart of the city, the latter half of my childhood was spent growing up in a small country town. We had horses, lots of barn cats, and we raised a couple of sheep. Our family doctor, aptly named Dr. Bone, whom I now affectionately refer to as “Dr. Awkward,” had been treating my family for some time.
Dr. Bone (seriously) aka “Dr. Awkward“
Dr. Bone, er, “Dr. Awkward” was missing half an ear, had a lazy eye, wore glasses, and was balding (hence, his new moniker) – all of which I previously thought added to his charm, but later, proved to make my diagnosis and his lack of any bedside manner exceedingly more uncomfortable.
Having explained my symptoms, I undressed from the waist down and placed my feet in the stirrups. Dr. Bone took one short look at the offending blisters, stood up and told me I could get dressed and then promptly exited the room.
I still wonder whether he went to tell the nurses, cried, washed his hands and arms profusely, or simply sat behind the door dumbfounded and unsure of what to do next.
When he returned, he said I had herpes, and frankly, it was the worst case he had ever seen before.
He gave me a prescription, I said thank you, and my mom went to the front desk to pay our co-pay as I made a beeline for the car.
To this day, I don’t know if Dr. Bone had actually ever seen a herpes outbreak before mine.
His general look, which, he could not help, of course, made the situation even more surreal to my 16-year-old self. I wondered if he had ever had sex at all. I wondered if he could even see what he was looking at with his lazy eye and all.
I couldn’t relate to him, and he certainly gave no indication that he could relate to me.
My Scarlet Letter
I felt like a leper. I was a modern-day Hester Prynne.
My doctor’s stark reaction and subsequent inaction (his inept knowledge of STIs/STDs: the resources, support groups, help lines, statistics, etc.) are still disconcerting. Not only was I diagnosed with a life-long viral infection by a practitioner who was missing half an ear, had a lazy eye, glasses, was balding, and named Dr. Bone, I was given nowhere to go and no information about my infection.
To this day, I’m also not certain which type of herpes simplex I have (HSV1 or HSV2) – update: now, I know I have HSV2. I was not given a blood test (I’m not even sure they did those blood tests 14 years ago when this happened), and my case was not reported to the CDC (diagnosis by family doctors and those only diagnosed by sight are often not reported or part of the statistics on the CDC’s website).
To me, it makes no difference. It’s genital and it’s not going away; so here I sit, hanging out with my herpes, telling you a story…
Is There a Silver-Lining?
Long story short – the experience sucked.
I’ve since learned, others have endured similar visits – ones where they are told their visual symptoms are the worst the practitioner has ever seen and where they are given little or no information about their infection/disease and the external resources available to them. It’s evident this will not be the last we hear of stories such as my own, unfortunate as they may be.
All of this is highly disappointing. I feel for those people having to go through something similar. It only serves to further alienate the individual and makes an already devastating diagnosis that much harder to deal with.
Often, it is the stigma surrounding the sexually transmitted infection or disease that is hardest to live with, not the STi/STD itself – most STI/STDs are either curable or manageable with the right medication and/or healthy lifestyle habits.
**Full disclosure: I do not see people and their unique and distinguishing physical characteristics as I once did at 16. However, to tell this story as it felt at the time, I must mention what I thought about Dr. Bone’s appearance, because it had a lasting effect on how I viewed the experience for many years thereafter.**
- How to Not Give an Eff about Having an STI
- All about Herpes Disclosure
- Information about Herpes
- The Author’s Interview
- Herpes In-Depth
- An Interview About Contracting Herpes Via Oral Sex
- Share Your STD Story
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- Oevermann, Lena, et al. “Transmission of chromosomally integrated human herpes virus-6A via haploidentical stem cell transplantation poses a risk for virus reactivation and associated complications.” Bone marrow transplantation (2019): 1.
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I just came across this site today, and I’m so happy I did. First of all, I would like to say that I’m very inspired by you. It is very brave of you to tell your story so candidly. I couldn’t help but tear up a little when I read about your diagnosis. What an awful way to find out you’re infected. Despite your condition, it seems to me like you still live a very fulfilling life. You haven’t let your disease define you or hold you back. Your story really gives me hope!
I remember learning a little bit about STDs in middle and high school. I remember the teacher telling the class that STDs are bad and we should abstain from sex to avoid them. Despite their warnings, when I first started having sex at 16, I never even thought twice about STDs. In my mind, the only people who had STDs were “sluts”. At that point, I never imagined that I would be infected with one a few years later. My parents never talked to me about STDs. They are very conservative Christians and have always believed that premarital sex was never an option. The only time they talked to my sister and I about sex was when they told us NOT to do it until we were married.
When I started college, I couldn’t have told you the difference between chlamydia and gonorrhea. I knew nothing about any of the STDs. I didn’t know which ones were curable and which ones were not. I didn’t know how common they were or that you could have one and not even know it. I developed an extremely casual attitude toward sex. I was pretty promiscuous during my freshman year. Most of the time, I used condoms. But I wasn’t as strict about condom use as I should have been. There were times where instead of using condoms like I should have, I would simply ask my partner if he had anything, right before we were about to have sex. I was so naive. Like I said, I didn’t realize you could have an STD and not know it. I went in for the free STD screenings that my university health center did once a semester. I thought those tests covered everything and I was perfectly fine once I “passed” them. I didn’t realize that they didn’t test for HSV.
My first experience with STDs happened the summer after my sophomore year of college. I got a call from the student health center saying that I had been listed as a contact by someone who had came in and tested positive for chlamydia. I couldn’t believe it. I was terrified because I didn’t know at the time that chlamydia was the “best” one you could get. I ended up testing positive for it. I was given antibiotics and told that everything would be fine. But this ended up being a difficult case of chlamydia. For some reason unknown to me, it took me three tries with antibiotics to finally get rid of it! I studied abroad for a semester right after my diagnosis and had chlamydia the entire time unknowingly. I finally got rid of it after nearly 5 months, but I was still having weird symptoms that I couldn’t explain. My vagina was very itchy and irritated. My doctor saw a lot of white blood cells in a sample of my vagina, indicating that something was up. I decided to not worry about it. I didn’t revisit the situation until a couple of months later when I was in a new relationship.
I recently started noticing sores around my pubic region. I had one pop up several inches above my vagina and I automatically assumed it was an ingrown hair or razor burn. It didn’t heal for several weeks, but I didn’t really think anything of it cause it didn’t bother me too much. Then, my boyfriend showed me a cluster of blisters that popped up a few inches above his penis. He showed me this about a week after we had sex without a condom for the first time. My heart dropped when he showed me because I knew what it was. All of the signs and symptoms were pointing to herpes. I went into the clinic as soon as possible to get tested. A day after my visit, I got a call from my doctor and sure enough, I have herpes. I don’t have an earthly clue who gave it to me or how long I’ve had it, but somewhere along the road I got infected.
I’ve been wrestling with a variety of negative emotions since my diagnosis. I’m obviously upset because I have this disease that will be with me for the rest of my life. I’m not too worried about the outbreaks. I feel confident that I can keep them under control, or at least I really hope that I can. What worries me the most is how this will affect my future relationships. I’m sure this is the case with anyone who has been infected. I’m lucky because I am dating a guy who is very understanding and in his own words “isn’t going anywhere.” But what if this relationship doesn’t work out? I’m only 20-years-old. I wonder if anyone will ever really want to be with me knowing that they run the risk of contracting this awful disease.
As I’m treating this first outbreak, I feel pretty bad about myself. I’ve always thought that college was a time to be wild and experiment, but I never fully understood the consequences of this behavior until it was too late. I’ve done quite a bit of research on HSV since my diagnosis and one of the most valuable things that I’ve learned is that I am NOT alone. It could happen to anyone! It doesn’t just happen to the more promiscuous people and all it takes is one time.
Thank you for making this website. It’s truly a wonderful resource. Thank you for encouraging people to talk about STDs. I don’t blame my parents, teachers, or anyone else besides myself for contracting HSV. However, I do really wish that more educated people talked to me about STDs growing up. The problem is that the topic is so taboo nowadays! Maybe if people talked about it openly and honestly, we could stop the spread of them more effectively. I wish I knew then what I know now. But I’m trying not to dwell on the past. What’s done is done and I’m learning to live with it. Herpes may even be a blessing in disguise for me. Perhaps this will make me change the way I go about relationships. Maybe it will help weed out the boyfriends who don’t really care about me. I think it’s safe to say that I’m done with random hook-ups and sleeping around. I’ve definitely learned my lesson, but I learned it the hard way.
Once again, thank you for your inspiration.
Hi Michelle –
What an incredible story! You should do an interview or a short story as a post, so we can feature it!
In either case, I’m so happy you landed here, and you were able to find benefit to what we’ve created – these kinds of messages inspire us to continue working hard. So, thank you, kindly, for your genuine encouragement!
Don’t lose hope, despite the understandable emotions you’re wrestling with. An STD diagnosis is just that – not at all an indicator of your character.
What’s great is you’ve already discovered it doesn’t have to be a relationship deal-breaker either. Should that relationship dissipate, there are others who will see beyond your infection to who you are and will be able to weigh their risks conscientiously. Sometimes, potential partners choose not to take the risk, of course, but I’ve had a lot of success in using a bit of an ‘old-school’ approach. Years ago, it was common to date people for a while before ever engaging in sexual activities – right now we have more of a hook-up and then develop a relationship culture. Reverting back to dating and building a foundation before having to consider sexual risks and a comprehensive safer-sex approach seems to be the best way to navigate relationships with an STD. I’ve found, if I’ve done a good job of building a foundation first, the conversations I have to inevitably have are less traumatic, less forced and awkward, and result in a really positive outcome.
Thank you so much for your thoughtful comments, Michelle, and feel free to reach out whenever you’d like!
My diagnosis story is a BIG nightmare. I was diagnosed with herpes less than a week ago. It started with pain which eventually became unbearable – to the point where I would not want to use the restroom at all because I would end up crying. Although I was very sexually active with multiple men when I was a few years younger, I’ve had a stable and loving relationship with my future husband for a long time. I ended up in my college’s student health center due to the pain and because it’s considerably cheaper than the regular physician.
When I explained to the nurse what was going on, she had no sympathy for me what so ever. In fact she even told me that my future husband was most likely cheating on me. Not only was that not her business, but that’s also not the case. Being of the medical field I am quite surprised that she didn’t know that herpes can lay dormant and show no symptoms. This means both me and my partner could have gotten it from a number of people. When she told me that it “sounded like herpes”, I responded “well that would be upsetting” and the woman not only didn’t reply to me what so ever, but she gave me a disapproving look, shook her head, and proceeded to leave the room without another word.
By this point, I really felt like a piece of sh*t. Not only had the nurse made assumptions about my symptoms, she barged into my personal relationships, and clearly passed on judgement about my situation. All the mean while, I could barely sit on the table due to the pain I was in. By the time the doctor reached me I was already crying. I tried to explain that the nurse had been so unpleasant, but she seemed to ignore most of what I said in general. She followed the suit of telling me that my case was the worst she’d ever seen. When I asked her if my partner should be tested and how I should go about my sexual activity, she simply stated “I guess you’ll just have to have a talk with him”. Even though she was very eager to tell me about the prescriptions she was giving me, she had little to no information about herpes. She didn’t give me any types of resources and she wouldn’t give me advice on what to do next. The only facts she gave me on herpes were that it was going to be a “pain in my ass” (in which she thought was the funniest thing she has ever said) and that it was going to not go away. When I had a major melt down as she was about to close up the appointment, she just told me “at least it’s not cancer and you’re not dying” and left me at that.
Not only did I cry the whole drive home, but for the next two consecutive days. I had to find out information on herpes from various websites. When I informed my partner and told him they didn’t give me any information, we both stressed out that it was going to be worse than it was. We both cried over the fact that we assumed children would not be in our future until we looked it up later online. Not only am I throughly disgusted with how I was treated by the medical staff at my diagnosis, but I simply don’t understand the morality of it. No one should ever be diagnosed with a major, life changing medical issue and be allowed to leave the office not only upset, but with almost no information. My diagnosis was one of the most tramatic experiences of my life. Not only will I not be returning to that clinic, but I will ensure that next time I see a physician I get the help I need instead of allowing them to revert to their stigmas on STD’s.
Hi Amy –
A nightmare?! I’ll say! Sheesh, you poor thing!
I’m just appalled at how you were treated. Quite honestly, I hear this all of the time. At least you’re not alone in having been shamed by a clinician, but, I’m sure you’d agree, this is something you’d rather not hear others experiencing as well. It’s horrendous and just shows how stigma persists even in the medical sector…
Some of it’s not entirely their fault, I suppose; they are not always well versed in STDs. But, really, lack of knowledge or not, joking about someone’s condition, lacking basic suggestions for resources, and making assumptions about your and your husband’s sexual activities is not only poor bedside manner, it’s incredibly unprofessional.
You make an excellent point there too; there’s no way to tell (if you both end up testing positive) who had it first, as HSV can lie dormant for years without exhibiting signs or symptoms and many people are completely asymptomatic – never having an outbreak, but still able to transmit the virus to others. Which, of course, is one of the many reasons why so many people are infected.
Good for you for pursuing accurate information and advocating for yourself! Definitely, definitely seek an alternate care provider, because the good news at the end of this story is, there are some really great/non-judgemental/caring/empathetic ones out there too. I was lucky to find one some years back, thank heavens, and he (an OB/GYN) was one of the first to reiterate how benign HSV can be, how it doesn’t have to alter my life, stop me from having productive/healthy relationships – or children, for that matter – and that I’d be surprised by the number of patients he has in the same position. Now, of course, I know how prevalent it is and all that he said was incredibly accurate. However, at the time, he was a saving grace! EVERYONE deserves that kind of care.
As you can tell, this is my soap box….
Anyhow, I’m so happy you found us here, and that you’ve been doing your research. Education, above almost all else, is what reduces that stigma and will also make any STD diagnosis much more tolerable – especially initially.
Thanks so much for sharing your story. Knowing others have been in the same situation helps me and all of our readers, and reminds me to continue writing. Nothing like having to educate the educated, huh? 😉
My story is less of a nightmare because of the doctor and more so because of the circumstances. I mean it’s never a good time to hear you have HSV but you’ll see what I mean:
I waited until I was 23 to have sex. Earlier in the year I had been through a terrifying car accident that should have killed me, but instead by the grace of God I walked out alive. I went through a serious case of carpe diem after this that left me much more inclined to take risks than my pre-accident self. When I started dating someone who I really cared about and seemed like the perfect gentleman, I decided “Why not?” When the mood was right there was no condom around and of course I thought the biggest thing to be worried about was getting pregnant which I already had under control since I was on birth control for hormonal reasons. A few days later I had a feeling that something that something just wasn’t right. I had moved to a new town recently and decided to find a doctor here just in case. When I explained the whole story to her, she recommend I get tested. At the appointment, she said she saw a few bumps but they could be normal and everything else looked fine. Turns out those few bumps were herpes. Basically, I had sex with one man, one time, and contracted an STD. Awesome.
Fortunately, the doctor was actually very supportive and explained that it wouldn’t effect my ability to have children and that although it doesn’t go away, I probably wouldn’t have to worry too much in a few years as the immune system becomes acclimated to fighting the disease. She told me the statistics and said she has diagnosed many people. She also said it’s easier for women to get it than men (and the real kicker, which was that I was more susceptible to it since it was my first time, so waiting until I was older actually made me worse off!). I immediately told my then-boyfriend after the appointment who told me over and over again “I had no idea.”
It’s been about 5 months later and I’ve had many realizations since then. I was bitter that I would never be allowed to feel desirable. That I would never be allowed to engage in a casual hook up if I wanted to. That future partners would always wonder if I was telling the truth about having gotten it on my first time. Later I realized, it doesn’t matter. If someone doesn’t want to be with me because it this then that sucks for them, ’cause I’m pretty freakin’ awesome. And if they don’t believe me, I shouldn’t trust them anyway. For a while I was even bitter that I went to go get tested since my doc said “This first outbreak is usually the worst. Yours is so mild you probably wouldn’t have ever known you had it if you hadn’t come in this time.” Now I imagine if I were to find out WAY later and not have any idea how I got it or who I gave it to, I would have WISHED I’d been tested. I am a Sunday school teacher. I felt like it made me a hypocrite. Now I see that really all an STD means is that someone is human. And able to make mistakes. And God still loves me regardless. He saved me from an early painful death in a burning car and could’ve easily spared me this, but didn’t. It’s all for a purpose.
Before this, I would have believed the stigma against others. I would have judged and been afraid. And herpes? It’s some uncomfortable times and awkward conversations but it doesn’t have to affect anything in my life I don’t allow. In fact, I’ve come to think of it more like a test to see if a guy is even worth my time 🙂 Thanks so much for letting me share my story (Sorry for length!) and feel like a part of a community. I so admire your bravery and initiative. If we were all as candid as you, this wouldn’t be nearly as big of a deal.
Hi Anne –
How refreshing to hear your doctor was much more realistic and informative! The good news is: there are plenty of others out there like her too. My current OB/GYN is fantastic, and, I dare say, significantly aided in my path to self-acceptance and healing.
I’m not sure what she meant by ‘you wouldn’t have to worry much in a few years as the immune system becomes acclimated’ – everyone’s immune system handles the virus differently. Whether you never ever get a noticeable outbreak again or you get them frequently for years and years (your very mild outbreak may not have been the first; it’s hard to tell, and it might have been HSV1 contracted from oral sex, which would explain it’s mild severity), it’s always transmittable to others. So, just do your research, and don’t rely on anything one doctor says, or I say, for that matter!
I’ve heard a few others say they feel their infection is a great test of character and relationship gauge as well. It certainly weeds out those who are only interested in one thing, that’s for sure. 🙂
Anyhow, Anne, thank you so much for sharing your perspective here!