A story about living with genital herpes.
A human-centred approach
to eliminate the stigma of HSV.
contact: email

This is part of my Master's dissertation "A human-centered concept to tackle the stigma
of the Herpes Simplex Virus (HSV)" at Kingston University London.

What story do I want to tell?
I want to tell the story about how I accept
my diagnosis and live beyond herpes,
to educate myself and others
in order to end the stigma of STDs.
I want to create space for an open dialogue
to accept herpes as a regular skin condition in society.
On a mission to end the stigma around STDs like Herpes
To find out what I wanted was a powerful way to find a purpose and express myself.
Who is my audience?
My audience are people living with herpes – me and you. We all struggle sometimes to accept herpes as a normal part of our lives. We suffer from the stigma even though most days we can handle the symptoms of herpes quite well. The stigma can lead to emotional and mental health issues as far as suicidal thoughts.
What does my audience need?
A safe environment where support and open communication allows to clarify misinformation and learn from others.
Receiving the reassurance that after an adjustment period everything will be fine is essential.
The loss of control releases many negative feelings. It is a major need to know that it is possible to gain control again.
What is the goal?
I want to create space for an open dialogue
to accept herpes as a regular skin condition in society.

Open communication about STDs leads to better education.
Better education leads to more prevention.
More prevention leads to better management.
Better management leads to better mental and physical health.
How do I want to tell the story?
I want to tell my story in a way that I can involve people. Stories and shared experiences connect us and it was essential for me to use a medium which could support this human-centred approach. Video gives me the opportunity to reflect on my own storytelling skills and allows me to show my face and bring emotions across.
This part is the core element. It helped me to define my goals and framework so that I don't get lost on the way to create my story.
What happened?
The first step I took was using post-its to map my HSV journey.
I wrote down every relevant event related to herpes since the day I got diagnosed. I added feelings and thoughts to every event. This helped me to reflect on my feelings and behaviour.

Orange post-its

Relevant events
Blue post-its

Yellow post-its
I used the wall in my bedroom to map my personal experience. Every time before I went to bed I added some new thoughts.
Try, fail, learn, repeat
This is where the real fun starts: Experimentation. I took the freedom to experiment with different content, gestures, tone and outfits. I uploaded my videos on vimeo with private settings so that I could choose an audience which I was comfortable with.
Take #1
Take #2
Ask for Feedback
The feedback below helped to improve my first video. It was scary to share it, but it was essential to hear what I could improve. I already knew that I was struggling with bringing the emotions across but after the feedback and some conversations with people around me I realised why: I talk about a sensitive topic and I tried to protect myself so I didn't allow to show vulnerability even though this talk was all about being vulnerabe. The difference between Take #1 and #2 is significant.
Thank you for being brave! Speaking directly to the camera works powerfully in service to your story.

The nail polish and use of your hands felt brilliant! I have never seen something like that before. It grabbed my attention and it worked effectively. I hope that you keep this as you move forward.

Overall, the video is long, and I think that you could cut the part about randomness and the undesirability of perfection. This part felt "preachy." As soon as you shifted into "So what have I done? I told one friend, and then another, and then . .. " my attention picked up and I felt connected to you again.

At the end, perhaps you could show a link to a guide to educating others about herpes? Maybe there are people with herpes who have not been as proactive as you in learning about their own condition and could use some help with explaining it to others?

I wish you continued courage as you complete your dissertation and share your story.
Thank you for sharing the video and asking for my opinion. I thought it was amazing that your words kept flowing and you managed to speak for nearly 8 minutes in a onetake video (!) I have watched it a few times now and in an attempt to find some small things that could improve the video further, here are my suggestions:

Body language: The eye contact was focused on one spot, it looked better when you moved the gaze away sometimes, like looking slightly away, looking down and then coming back to the camera. Also, sometimes the walking back and forward became a little distracting. I do think it's better to be standing and moving instead of sitting, but try a little less movement and see how that works. You are moving your hands well, but I think you could bring even more impact by also using your hands (and voice) to underline your message when you say that you don't let anyone make bad comments or shame you.

Tone and voice: It became a bit monotonous sometimes in the first half, the 2nd half was more lively. I liked the parts where you showed emotion, like smiling. Would it be helpful to have someone behind the camera for a more interactive vibe? Given the sensitive topic, personally I would've expected to see a bit more emotion, not necessarily sadness, but anything you went through emotionally when you speak about when you first found out.

Outfit: I really like the bright yellow, it works well with the positive message :)

Visual examples: The background is a little distracting with the whiteboard and the tape marks. It should be a neutral background that doesn't steal attention.

Clarity: Perfect!

Content: I really like the content and the nail polish metaphor. I would've liked to hear a bit more about the stigma, how it plays out and maybe an example of it, that would make the story more personal. I like that you mention the two key words early on: randomness and courage, which make up the essence of your message. And I really liked the metaphor with making a fist together and pushing the stigma away (followed by your wonderful smile).

Again, it was a great piece of work. After seeing the video again and again with the aim to give you some constructive feedback for the next round, this is what I could come up with. I hope it helps.
I think it is great how you try to explain the story with the stigma and the virus and how you explain how it affected you. I also really like the end of the movie how you try to motivate other people.

Other comments to body-language:
I feel like you focused too much on the content at the beginning. You are not blinking with your eyes in the beginning and focused too much on the camera. When you walk away from the camera the tone is not as good anymore. You walk away too far and back again. Why do you not try sitting down? If you do the explanation with the stigma and the virus you should also look at your hands sometimes. Otherwiese it is not natural.

Comments to content:
The explanation with your hands and the nail polish is great and really clear
All the videos are work in progress
which I wish to continue…
Talking about herpes in a one to one conversation is much easier because I have someone to interact with, but telling my personal story in front of a camera was scary. Trying different ways to tell my story allowed me to test what worked for me and what didn't… learning by doing.
What is the impact of the story?
Personally, the outcomes of this storytelling experiment are still work in progress, however there are two-long term impacts that I want to mention. In this short amount of time I learned a lot about how I want to tell my story. The trial and error was important to figure this out. I decided to record my story to reflect on my own skills, to analyse gestures and rethink the content. I was uncomfortable to film myself and to watch myself talking in the video was even worse. But it already had a positive impact on my life. I switched my mindset of seeing herpes as a taboo topic in society. The more I talk about it, the less I worry.

I realised this is not about me, it's about others. I hope that this experiment shows that no one can tell an impactful story from scratch. This is a message for people living with herpes:

I want you to use this as an example to create your own story. You can reinvent yourself every day.
This experiment helped my to sharpen my perspective and getting ready for my next conversation about herpes.
This is not the end, it's just the beginning.
What are my key learnings?
The inexperience of standing in front of a camera and record myself did influence this experiment,
nonetheless I discovered some important aspects:
Use your vulnerability
I had a hard time to create an emotional vibe and a positive atmosphere, because I was trying to talk about herpes in an open way but I still tried to protect myself. As a result I was completely disconnected from my own story and my own experience. I realised that personal examples are the glue between me and my audience. I can show my vulnerable side in order to bring my points across. It makes me human and it demonstrates how hard it can be to talk about herpes even after reaching a point of acceptance. Vulnerability is the key.

Choose your audience and critics
I have felt unprepared to talk about herpes in public for a long time, even though I didn't want anything more than that. My fear was partly connected to the possible rejections or negative comments but also to the fact that I didn't know how to talk about it in a simple way which doesn't overload my audience. It didn't want them to miss out on important aspects but I also didn't want to scare them away. I realised if I choose my audience I feel more comfortable. What does that mean? For example, start your conversation about herpes with people you trust. This builds up the confidence and you can try different ways of saying things. It was important for me to understand that I don't need to debate with the critics from the very beginning.
Create a common understanding
Even after I accepted my diagnosis it was still hard to say the words out loud. I have spent hours in front of the mirror to practice the sentence „I have genital herpes". The more I repeated it the more I got used to it. Now it is part of my regular vocabulary and I'm not nervous to say it anymore. Using simple language like I would explain something to 16-year-old me helps to create a common understanding with my audience. Even if I know all the medical terms I always use a language that everyone who doesn't know anything about herpes is able to understand.

It's not easy but it's worth it
For me it was relevant to think about what the outcomes of my story could be. What is acceptable and what is unacceptable? This helped me to set my expectations. During this process I procrastinated a lot and I blamed myself for it. Sometimes I forget that this is probably not the easiest topic to talk about so it's okay if it takes some time. It's important to even start no matter how long it takes. Telling your story is an act of giving.
Get inspired by real stories
I admire people who are real, authentic and outspoken.
STIs aren't a consequence. They're inevitable. | Ella Dawson
The power of vulnerability | Brené Brown
She Got Herpes, But Herpes Didn't Get Her | Ella Dawson
On the Art of Public Speaking | Simon Sinek

A better way to talk about abortion | Aspen Baker
10 ways to have a better conversation | Celeste Headlee
Every experience is individual and
your message deserves to be heard.
What story do you want to tell?
On a mission to end the stigma around STDs like Herpes
Created by Stephanie Batliner
contact: email

This is part of my Master's dissertation "A human-centered concept to tackle the stigma
of the Herpes Simplex Virus (HSV)" at Kingston University London. The purpose of this study is to create
space for an open dialogue to accept herpes as a regular skin condition in society.

Credits: I attended the online course from IDEO U "Storytelling for Influence" and used their framework as a basis.
The beautiful icon in the header is from Flaticon and was designed by Freepik.