Stigma & Me: Meeting Notes

In last weeks support meeting, we discussed stigma with HSV. We shared stories about times where we’ve seen or heard others stigmatize HSV. (Even how we may have perpetuated stigma before we were diagnosed)

We discussed the commonality of HSV and questioned the separation of the medical community and the common public. HSV is not included in a standard STD panel. Most of us are told it’s because it’s too common. Because of the prevalence of “cold sores”, it’s difficult to pin down exactly how many people have HSV.

The CDC (Center for Disease Control) only perpetuates this by not tracking HSV as they do other with other STD’s. We want to know their reasoning as to why this is not tracked!

The frustration we share…. if it is so common… why is there still stigma? Why are cold sores acceptable but having the same virus downstairs is unacceptable?

We exchanged ideas on how can we end the stigma.

  1. Making it widely known and accepted cold sores are herpes.
  2. Writing the CDC and local doctors urging them to report instances HSV.
  3. Create a campaign advocating HSV be included on a regular STD panel.
  4. Urge people to get tested- even if they aren’t showing symptoms. HSV can be spread even if they’ve never had an outbreak. This can only be diagnosed through blood testing!
  5. Contacting local schools and health departments insisting they teach children facts on HSV rather than using scare tactics and abstinence. (HSV can be spread when using condoms. Cold sores, HSV, can spread to the genital areas through oral sex.)

These are all things we can do anonymously. Through the internet- anything is possible. We can be protected with private profiles while still spreading the word. There are a few brave souls who have gone transparent but it is not necessary for the truth to come out.


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