When Healthcare Providers Use Social Media to Perpetuate Herpes Stigma
Something has been in the air this past week! The STI-shaming and herpes jokes have been out of control! Since starting Something Positive for Positive People (SPFPP), I’ve made it a point to comment on social media posts that perpetuate stigma, in order to show those people who aren’t at a place yet to speak up for themselves that they don’t have to stay silent.
Commenting on these posts have proven to go a long way. Sometimes I just ask questions about the post. I question people in the comments, asking them to consider the impact their statements have.
I speak on behalf of those who’ve expressed to me they wanted to end their lives because of how people see them according to these kinds of posts.
There’s a rather consistent series of events that unfolds each time I comment on these posts, and it goes like this:
- Someone DMs me a post.
- I read the post.
- I respond to the post asking for elaboration on the truth to it.
- I scroll thru the comments and praise the positive, question the negative, and correct the ignorant.
- I receive praise privately via DM, the page loses followers, & I get asked, “How you know so much?”
- I plug HANDS – Herpes Activists Networking to Dismantle Stigma, SPFPP, and say I have herpes.
- I share the post – and my comments – and the comments get likes and others support the facts.
- Right before I get blocked, there’s discussion between the ignorant and educated and I get followers.
- I get blocked and later hear from followers who check my post that my comments were deleted.
- I have a meditative meal to recharge.
On Tuesday, August 13, 2019 though, it was brought to my attention that a page of medical professionals, primarily nurses by the name @codebluememes on Twitter and Instagram, tweeted “after you match with someone on a dating app, ask them what meds they’re on . . . nothing like a medication reconciliation to get those red flags flying.”
The description/caption on the Instagram post was problematic because it read, “Valacyclovir (herpes medication) and Risperidone (antipsychotic used to treat schizophrenia) (huh. I think I’m gonna pass…” then followed by a bunch of nurse-related hashtags.
I scrolled through the comments and saw people calling out the person who posted for being a nurse perpetuating stigma. Other profiles with descriptions like “proud nurse,” “ER nurse,” “Registered nurse,” “nursing student,” and “saving lives everyday” joined in on the stigma perpetuation.
One nurse replied, “Real pro tip here” and another goes, “Herpes eh? Cool cool.” *runs away. There were many more laughing emojis and hahas here with support from this community of nurses and nursing students. Another nurse commented, “I have always said, “If I were to get divorced and had to start dating again, I am asking to see the med list and going through medicine cabinets!” (followed by three side laughing emojis). Another nurse comments, “if it ends in -ir let them go!”.
When I found the page on Instagram it had 1,404 likes and 58 comments. This page at that time had around 37K followers. This kind of content would be problematic under any circumstance, but the fact that these posts and comments came from nurses – health professionals – is indicative of how socially acceptable it still is to shame people who are living with STIs.
But the perpetuation of herpes and mental health stigma isn’t nearly as concerning to me as was the absence of any of the nurses addressing how problematic this was. One nurse commented: “Would prefer them to be on meds than not – least means they’re treating whatever it is (thinking emoji).”
That’s the closest we got to a correction from this community primarily tailored to nurses. If this is going unchecked within a community of nurses, what else is? Is there judgment toward people with multiple sexual partners, people who receive a diagnosis from any of these practitioners, what about minorities, LGBT+ members, people who are disabled, what about fat people?
Shortly before I was blocked, someone privately messaged me saying they DM’d the page @codebluememes directly and expressed how this perpetuated stigma and that this isn’t funny. @codebluememes replied with, “I think it is” and then later blocked this person. I managed to send a comment requesting we reconcile the damage done here. The page’s response was a block. I am surprised because I addressed this person by their first name and expected some sort of communication afterward, but nothing.
I moved to Twitter and messaged their account by the same name only to receive the same treatment I got on Instagram, a block.
I received messages from people who not only take the herpes medication but also some of the other medications for mental health. They stressed how hurtful these comments are, especially coming from those we should have trust in: our medical professionals. Nurses reached out to me and expressed that this isn’t surprising because they deal with this in their workplace as well.
We face enough judgment from people who don’t have the quality of education on medical conditions. Mental health has slowly become something we prioritize care for rather than avoid due to stigma, and with herpes we’re getting to a place where the stigma is exposed for what it is.
This network of medical professionals is creating an additional barrier to healthcare because seeing posts like this, how can patients feel safe enough to disclose health-related info that allows them to receive better treatment? Their fear of judgment for their lifestyle or a decision they made is driven by fear of exactly what’s been verified by @codebluememes.
Many Something Positive for Positive People podcast guests have told me that their health care providers have met them with the same kind of judgment demonstrated by @codebluememes and the page’s supporters.
When people in positions of power perpetuate stigma, it tells others that they should reject a potential partner who is STI-positive. It tells people living with STIs that yes, they should be afraid to reveal their status, even to a medical professional. This also extends into not wanting to be tested, therefore possibly missing something that can be treated if caught soon enough.
This @codebluememes situation has just gotten started and is a perfect example of why #WeNeedAButton. We need to bring awareness to these issues, and flag health care providers who perpetuate stigma and project shame onto patients.
Eddie Meraz, a nurse practitioner who is openly gay and who was interviewed by WaxOh for #WeNeedAButton, said that, unfortunately, “some people take for granted the fact that our patients look up to us and are asking for help. Patients are putting themselves in a vulnerable position, however they identify or however they present. I think unfortunately, many providers – who may be overworked or maybe they just don’t have the cultural sensitivity or an emotional intelligence – aren’t picking up on how careful we must be in communicating and talking to people. My assumption is that if somebody is saying inappropriate things to a gay patient, they’re probably saying things to other patients as well.”
Doctors and nurses need to be educated on how their language affects patients, and public health at large. There need to be extensive, mandatory trainings on sexual health, intersectionality, cultural sensitivity, all through the lens of eradicating stigma and shame.
Speaking of which, after they blocked me, @codebluememes posted 47 stories on Instagram, attacking herpes activists such as myself. In these stories, whoever is behind the account is claiming, among other things, that they are a compassionate nurse, and that the posts (some of which have been taken down), were a joke.
A joke. They also make a point of saying in these stories that they do not have herpes. Maybe that’s why they feel so strongly in their defense that this language is simply a joke. Maybe it’s because they’ve never personally felt the weight of stigma perpetuated by these so-called “jokes” – whose consequences have led people to consider ending their lives.
Or maybe they do have herpes. And they are filled with so much internalized shame that they choose to lash out in this way. Who knows.
What I can tell you is, the Herpes Activist Network, HANDS is taking further action here to let everyone know how not okay this is.
Episode 95 of SPFPP highlights a recent experience someone had with various medical professionals over a few days when they just needed to be tested and treated for an STI after a recent partner expressed that they tested positive for syphilis.
Enjoy, and stay positive.