As a designer, it’s my responsibility to step up and create positive impact. Design is no longer an afterthought, design is a conversation starter. I want to play an active role in changing perceptions, so that’s what I did. I was diagnosed with the Herpes Simplex Virus (HSV-1 genital) in 2015.
“The whole thing caught me off guard. I didn’t know what do and how to manage this situation, so I gained as much knowledge about herpes as I could. I spent all my spare time on Google (so Google definitely knows that I have herpes).”
We are programmed to make sense of the things that happen in our lives. We need some logic to understand because it’s easier to accept logic. Getting diagnosed with herpes was out of my hands, it wasn’t logical and it wasn’t something I could control or change. Research turned out to be one of the most valuable ways to create understanding and acceptance for myself. It also showed me that some of the information out there is misleading, creates misperceptions and strengthens the stigma.
So you should probably brush up on your facts.
Gepostet von Tonic am Dienstag, 31. Oktober 2017
In 2016, I quit my job which I loved because I needed a change and time to think. So, I moved 848 km away from home and studied MA Communication Design & the Creative Economy at Kingston University London. Being away gave me the distance to reflect on my life. Would I have done the same if I had studied back home? Probably not. When the time came to chose a topic for my Master’s dissertation, I decided to research the future of work. I was interested in the topic but my progress was slow. Why? I was trying to play it safe. I was ignoring a topic which was right in front of me. Three days before everyone would present their dissertation topic in class, I got up in the morning and everything was so clear. I made the decision to pivot without looking back.
“Jumping off the train of perfection and finding the courage to realise this project was the best thing I ever did.”
I used my personal experience of living with herpes as a basis for my Master’s dissertation. I researched about the creation of the herpes stigma and interviewed people worldwide to see the bigger picture, create empathy and understand the different aspects of managing herpes. It’s a project that helped me heal myself but it is far more than that.
“It is a way of lending my voice to people living with herpes… until they are ready to find their own. It took me 103 pages of writing, and 1109 days of living with genital herpes to finally understand that herpes is not my weakness, it’s not my limitation, it’s my personal challenge to grow and to empower others to do the same.”
The feeling of losing control was one of my personal struggles. It’s the unknown which creates fear. Fear is natural, it’s normal, it’s human. Acknowledging and accepting that the fear is there, but still moving forward has created more gains than losses for me.
What have I lost?
- Absolutely nothing. (If anything I lost the negative feelings connected to my diagnosis.)
What have I gained?
- more control through openness and having the hard conversations
- better conversations and deeper connection with friends and partners
- a healthier lifestyle, more balance and awareness
- the understanding that vulnerability is not a weakness – it’s freedom
- the experience that when things change inside you, things change around you
- more empathy and a passion to design for healthcare
I couldn’t choose where this story started but I decided to influence how this story will continue. Here is an overview of projects I have been working on related to sexual health:
- Master’s Dissertation: A human–centred concept to tackle the stigma of the Herpes Simplex Virus
- OpenIDEO Challenge: How might we radically improve access to, and quality of, sexual and reproductive health education and services for young people?
- 69 – The Story Collection: This website which publishes stories told by people living with herpes who want to empower themselves in order to support others.
There is more to come, so stay tuned! I want to thank my supervisor Janja Song who supported me with an open mind and valid inputs from the minute I pitched this challenging research topic to her. I’m grateful for the amazing support from my family and friends. I couldn’t have done it without you.
Originally published on my personal blog in April 2018