Herpes.Education

Breaking the Stigma

Herpes Awareness Day – October 13th – Tell Your Story Survey

By Jenelle Marie Pierce

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Herpes ActivistsHerpes Awareness Day is finally upon us, and HANDS (Herpes Activists Networking to Dismantle Stigma) is thrilled to unveil the results of the Tell Your Story Survey!

Hashtags #hands #handsstands #herpesawarenessday #had

Thanks to the incredibly diligent work of the Awareness Campaign Committee and the committee’s Chair, KellyAnne Herman, on Friday, September 13th, HANDS launched a survey called “Tell Your Story.” In 10 days, we received over 500 responses from folx who have the herpes simplex virus. It was and still is an opportunity for people who have herpes to share their experiences anonymously, and for our network to shift “herpes awareness” from statistics to real life stories. 

Similar to our network’s approach on Break the Stigma Day on April 24th, HANDS made the decision to not just share statistics and facts, but to really help those who have faced a herpes diagnosis to know they are not alone – in the most personal, relatable way possible. Where Break the Stigma Day 2019 focused on sharing the stories of those who were public about their status, Herpes Awareness Day 2019 focuses on stories of the vast majority of those who have herpes who are not able to safely share their status publicly.

Short-Term:

  • The Herpes Awareness Day campaign centers human stories, submitted anonymously via the survey, which answer varying emotional and social experience-oriented questions, such as: Did you seek support immediately after diagnosis? (48% of respondents so far have said NO to this question).
  • We are using this data to create charts/graphs that will show, in a quick, easily-digestible way, what kinds of experiences folx with herpes report having.

Long-Term:

  • The survey will remain open (“Evergreen!”) so that newly-diagnosed people always have a space to share, but also for the purpose of bringing to light shifts in responses as Herpes Awareness Day grows more visible every year.
  • Quotations from respondents will go a long way in future campaigns and are the reason that “awareness” from a human perspective can powerfully shift the herpes stigma narrative.
  • Graphs and charts will also be updated each year providing exclusive content to distribute among supporters, followers, friends, and the community at large.

Here’s what you need to know:

  • We need many people to uplift this survey so that anyone who would like to share their perspective is heard. We cannot be inclusive if we don’t share this as much as possible.
  • We will take the data from the survey, and we will share it on Herpes Awareness Day, but we will also use this data to guide the resources we create, the interviews we do on behalf of HANDS, and to uplift the often silent voices of our audiences.
  • This survey will have a permanent home on our website, folx will always be able to participate and share their perspectives, and we will learn and grow from that ongoing and ever-changing data.
  • Hashtags #hands #handsstands #herpesawarenessday #had

Herpes is human. From spreading disconnected statistics to sharing relatable stories, Herpes Awareness Day on October 13th takes on a new and powerful evolution.

By participating in this survey, you can help shift the narrative so that we bring awareness back to the human side of herpes.

Survey Results:

Results of Quantitative Questions

How did you learn about herpes before your diagnosis?

  • 2.40% – I learned a lot about herpes in school.
  • 43.6% – I learned a little about herpes in school.
  • 0.40% – I learned a lot about herpes from my parents.
  • 6.70% – I learned a little about herpes from my parents.
  • 5.00% – I learned about herpes from a book.
  • 29.1% – I learned about herpes online.
  • 25.0% – I learned about herpes through friends.
  • 37.1% – I learned about herpes from the media.
  • 4.10% – I learned about herpes from magazines.
  • 12.1% – I learned about herpes from advertisements.
  • 15.5% – I did not learn about herpes at all.

If you did not find out you have herpes from getting tested, have you been tested for herpes since you were told/diagnosed?

  • 63.3% – Yes
  • 36.7% – No

How long ago were you diagnosed?

  • 10.2% – Less than 3 months
  • 11.7% – 3-6 months
  • 11.7% – 7-12 months
  • 14.2% – Over 1 year
  • 25.5% – 2-4 years
  • 16.2% – 5-10 years
  • 10.4% – Over 10 years

Which of these effects have been the most difficult after diagnosis?

  • 34.1% – Physical effects (ex: symptoms, outbreaks, sickness)
  • 34.1% – Mental effects (ex: distraction, confusion, denial)
  • 64.9% – Social effects (ex: shame, isolation, anxiety)
  • 77.4% – Emotional effects (ex: sadness, anger, depression)
  • 2.10% – None of the above affected me.

Did you seek treatment immediately after diagnosis?

  • 80.4% – Yes
  • 19.6% – No

If you did not seek treatment immediately, did you eventually seek treatment?

  • 78.4% – Yes
  • 21.6% – No

Did you seek support immediately after diagnosis?

  • 55.8% – Yes
  • 44.2% – No

If you did not seek out support immediately, have you gotten the support you need?

  • 56.7% – Yes
  • 18.1% – No
  • 25.2% – Other/Somewhat

If you sought support after diagnosis, what kind of support did you seek out?

  • 70.2% – I told a friend.
  • 53.8% – I told a family member.
  • 46.8% – I told my partner.
  • 22.6% – I talked to my therapist.
  • 8.60% – I hired a professional to talk to (therapist or coach).
  • 40.7% – I talked to my doctor.
  • 21.2% – I talked to a healthcare professional.
  • 12.7% – I used the resources my doctor gave me.
  • 80.7% – I did some research on my own.
  • 49.3% – I watched YouTube videos.
  • 23.0% – I listened to podcasts.
  • 53.6% – I followed someone on social media who seemed knowledgeable.
  • 17.0% – I messaged a YouTuber, podcaster, or someone on social media.
  • 6.80% – I joined a local community.
  • 31.2% – I joined an online community.

“When I was first diagnosed with herpes, my experience was… “

  • 61.7% – Mostly Negative
  • 21.6% – Somewhat Negative
  • 11.3% – Neutral
  • 3.90% – Somewhat Positive
  • 1.50% – Mostly Positive

“When I think about sex now, I feel… “

  • 44.5% – Excited
  • 28.6% – Overwhelmed
  • 39.6% – Aroused
  • 19.8% – Confused
  • 7.10% – Exhausted
  • 58.5% – Anxious
  • 16.6% – Satisfied
  • 27.3% – Isolated
  • 31.2% – Unclean
  • 25.4% – Open
  • 21.9% – Closed
  • 19.3% – Lost
  • 46.4% – Stressed
  • 26.5% – Prepared
  • 18.1% – Unprepared

Visual Representation of Results of Qualitative Questions

#HAD #HAD #HAD #HAD #HAD #HAD #HAD #HAD #HAD

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About Jenelle Marie Pierce

Jenelle Marie Pierce (she/her/hers) is the Executive Director of Herpes.Education & The STI Project: Breaking the Stigma®; the Founder of the herpes activists network, HANDS; the Spokesperson for Positive Singles; and a Tri-Chair of the Communications Action Group at the National Coalition for Sexual Health (NCSH). As an STI+ Sexual Health Educator and content creator, Jenelle has been dismantling stigma by reclaiming STI narratives® through awareness, education, and acceptance since 2012. Current bylines can be found in O.School, SELF, HepatitisC.net, Kinkly, PornHub's Sexual Wellness Center, and Allure. For fun, Jenelle stays active as a group fitness instructor and also spends time camping, snow shoeing, hiking, skiing, kayaking, growing things, running through sprinklers, and building sand castles. Learn more about her here, or find her on social media: Instagram, YouTube, Twitter, Facebook, LinkedIn, Pinterest, or Tumblr.