Tell Your Story
Thank you for choosing to tell your herpes story, in this completely anonymous survey. The Herpes Activists Networking to Dismantle Stigma (HANDS) decided that for Herpes Awareness Day 2019, we wouldn't just share our knowledge with you but instead ask YOU to share your knowledge. Every part of your experience after a herpes diagnosis has elements that are shared with others, and parts that are unique to you.
Our goal in creating this survey and collecting thousands of responses is to help raise a new level of awareness about herpes; it's not about transmission or testing, but about social shame and emotional wellness. We hope that your honesty will give us the opportunity to shift awareness of herpes stigma into the spotlight.
Your vulnerability is the key to helping HANDS make a huge difference in the lives of people who are currently or will soon be learning that they have contracted herpes, too. Please note that some of these questions may be uncomfortable to answer, and so none of the questions are mandatory. We ask that you take this survey when you are in a good space for reflection, or come back to it later if you're not quite ready to tackle these topics. Use your discretion when deciding whether to approach these topics; our team hopes to have harnessed a safe space through anonymity for you to express yourself fully, however we understand it can be difficult to process some of these memories and feelings again.
Again, HANDS thanks you for sharing your story in the hopes that it will help make the future of herpes diagnosis easier, destigmatized, and less alone.
#1 I have fully read the above statement before starting this survey.
Yes, and I agree to take this survey with full knowledge that the information will be used for anti-stigma awareness.
#2 Let's start at the beginning: What did you think about herpes / people who have herpes before your diagnosis?
#3 How did you learn about herpes before your diagnosis? Check all that apply.
I learned a lot about herpes in school.
I learned a little about herpes in school.
I learned a lot about herpes from my parents/guardians.
I learned a little about herpes from my parents/guardians.
I learned about herpes from a book.
I learned about herpes online.
I learned about herpes through friends/peers.
I learned about herpes from the media (TV/movies).
I learned about herpes from magazines.
I learned about herpes from advertisements & commercials.
I did not learn about herpes at all.
#4 How did you find out that you contracted herpes?
#5 If you did not find out you have herpes from getting tested, have you been tested for herpes since you were told/diagnosed?
#6 How long ago were you diagnosed?
Less than 3 months
Over 1 year
Over 10 years
#7 How did you initially respond to learning you may be living with herpes? (What emotions did you first experience? What were your immediate thoughts?)
#8 Which of these effects have been the most difficult after diagnosis?
Physical effects (ex: symptoms, outbreaks, sickness)
Mental effects (ex: distraction, confusion, denial)
Social effects (ex: shame, isolation, anxiety)
Emotional effects (ex: sadness, anger, depression)
None of the above affected me.
#9 Did you seek treatment immediately after diagnosis?
#10 If you did not seek treatment immediately, did you eventually seek treatment?
#11 If you sought treatment after diagnosis, please explain why it was important to you to be treated for herpes.
#12 If you sought treatment after diagnosis, what kind of treatment did you seek out? (prescription medication, herbal medicine, "cures", private or group therapy, other)
#13 Did you seek support immediately after diagnosis?
#14 If you did not seek out support immediately, have you gotten the support you need?
#15 If you sought support after diagnosis, what kind of support did you seek out? Check all that apply.
I told a friend.
I told a family member.
I told my partner(s).
I talked to my therapist.
I hired a professional to talk to (therapist or coach).
I talked to my doctor.
I talked to a healthcare professional.
I used the resources my doctor gave me.
I did some research on my own.
I watched Youtube videos.
I listened to podcasts.
I followed someone on social media who seemed knowledgeable.
I messaged a Youtuber, podcaster, or someone on social media.
I joined a local community.
I joined an online community.
#16 If you have told others about your status, how long did it take after you were informed of your status to tell someone about it? (Try to include a specific amount of time, ex: 6 days, 6 months)
#17 How did others respond to you, regarding your diagnosis? Try to use descriptive words, like forgiving/unforgiving, caring/dismissive, compassionate/apathetic.
#18 How do you feel about the person whom you may have contracted herpes from? Do you still have a relationship with this person?
#19 "When I was first diagnosed with herpes, my experience was... "
#20 Describe your romantic/sexual life before you were diagnosed with herpes.
#21 Describe your romantic/sexual life after you were diagnosed with herpes.
#22 "When I think about sex now, I feel... " (Check all that apply.)
#23 Final thoughts: How do you hope to see this survey help others with herpes & stigma? What do you want people who are newly-diagnosed to know?
#24 ONLY if you would like us to quote you for your responses in the results, please provide your name, email address, and/or social media handle. (Leave this blank if you wish to remain anonymous.)
#25 If you would like to receive HANDS updates, news, and ways to support, please provide your email address. (ANSWERING THIS QUESTION WILL STILL PRESERVE YOUR ANONYMITY. WE WILL NOT SHARE YOUR EMAIL ADDRESS WITH ANYONE, NOR QUOTE YOU IN THE RESULTS UNLESS YOU RESPONDED TO THE PREVIOUS QUESTION.)
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