I was going through a pile of mail when, to my surprise, I opened up a small package from ASHA (American Social Health Association), and found a couple copies of their newsletter, 'the helper', inside, with the interview I gave on the front page.
I am humbled.
The newsletter is subscription only, but as I was given a rough draft of the article that was written for proofing purposes, I am going to share with you the contents of the article, as it was published in 'the helper'.
Love to all.
Michelle
Stifling the Stigma: Michelle Landry, National Herpes Advocate
For this issue of the helper, we spoke with Michelle Landry, who in recent years has become a national herpes advocate: writing self-help and relationship articles, urging the media to produce stories with a positive and educational focus on herpes, and speaking about her personal experiences. She was invited as a guest on The Tyra Banks Show in an episode entitled, “The ABCs of STDs” which aired April 21.
Helper: How did you react to your herpes diagnosis initially? Did your feelings change over time?
ML: When I was first diagnosed, I was emotionally devastated. But with time I was able to cope. In fact, ASHA was one of the first resources I found when I was diagnosed. Everything was going fine until my first relationship after getting diagnosed. The first guy I told called me three days after I told him to say he didn’t want to see me again, or even know me. That threw me for a loop. I had to take a look at ASHA and other resources and draw strength from my friends to pull myself through.
I feel that living with negativity only draws more negativity. I believe to heal you need to accept what has happened, educate yourself, and move forward. I know that’s not as easy as it sounds, but people need to know you can live a positive life and have herpes.
Helper: What advocacy and outreach efforts have you taken on and why?
ML: Advocacy is important for lots of reasons – my distinct belief about what’s right and wrong and that people have value. My dad was a politician, so from a very young age I was brought up in the ideals of justice and fighting for what you believe in. I’m not shy, I speak well, I don’t mind talking about having herpes, and I want to help others. I am the same person I was before having herpes. Herpes is a part of my life, but it is not who I am and does not define me as a person. It’s hard to talk about yourself sometimes, but if I don’t – who will?
As time went by, I saw how affected other people were by it – the shame, embarrassment, stigma – mostly because of misinformation. I have a friend whose family thinks he’s a self-proclaimed bachelor by choice. In actuality, he has herpes, hasn’t adjusted to the dating scene well, and is too embarrassed to tell his family.
Last year, I was in a car accident and my resulting back problems required me to have physical therapy. Part of my PT involved going into the heated pool for exercises, but the lady in charge of the pool – and even my doctor – wouldn’t allow me in the pool because they were scared I would give herpes to people, incorrectly citing a blood borne pathogen law. They made me sit in a private room with an orange biohazard sign on it. Of course, I did follow through and report the incident to the state of
Granted, with genital herpes there will always be some amount of stigma because it’s an STD that is ‘down there’. Some people will not understand, make assumptions, and want to snicker. Open discussion and providing correct information is imperative to make a difference in how having HSV is viewed by others.
Because I firmly believe in the need for positive press, I’ve written self-help, relationship, and advice articles for magazines and Web sites. I periodically send facts about the herpes epidemic to TV shows asking for positive stories about herpes. In the past few months, I’ve been working with MPwH.com [Meet People With Herpes] founder A.J. Matthews to produce a series of interviews to be released via podcasting on iTunes and at TalkingHerpes.com. This is important because people who are afraid to talk to others can learn about HSV in the privacy of their home, or earphones, really. I believe this has the potential to educate many people.
Helper: How did you come to appear on The Tyra Banks Show?
ML: One of my more recent emails to media outlets just so happens to have coincided with an episode on STDs that the producers of The Tyra Banks Show were planning, so they invited me to talk about having herpes. It was a whirlwind. They called me on Tuesday, provided me with flight information on Wednesday, I flew out on Thursday, and we taped the show on Friday.
To prepare for the show, I wanted to review the facts to be sure I could accurately educate people. I asked ASHA to fax over your great article from The Helper on stigma (“Can’t You Take a Joke? Facing Herpes Stigma…with a Smile” from the Winter 2003 issue).
Helper: Speaking of stigma, did you come across any?
ML: I was given a copy of the script which had the questions I was to be asked and saw they planned to introduce me by saying, “This is Michelle, who’s been battling herpes for five long years…”. I told them I was not ‘battling’ herpes, that how words are used can reinforce the stigma, and I wouldn’t go on the show unless my introduction was changed. They changed the introduction.
And yes, they used stigma to a certain extent. I was told by one of the producers that they planned to use the stigma to both educate and scare people into being more sexually responsible. The emphasis though, was on education. Overall, it was a very positive and informative show.
Helper: What sort of impact do you think the episode will have?
ML: I think this show will definitely have a positive impact. It’s the first time this has been approached in an educational manner on a talk show without trying to accuse people of giving it to others or playing it up for drama. I was honored to be in the company of other advocates and people brave enough to go public with their stories, including an editor at JANE Magazine, whose friend died of cervical cancer (related to HPV), a young woman who has HIV and is now an advocate, and a couple where the man had unknowingly given chlamydia to his girlfriend but both had been treated.
After I appeared on the show, many people contacted me to say that I inspired them to tell their families about having herpes. I feel the more you talk about it, the less power it has over you.
Helper: How do you find the courage to talk about this so openly?
ML: I’m just a normal everyday person who is comfortable with public speaking – I worked in radio, had a family in politics – you get used to talking about topics that aren’t necessarily popular. Plus, my family has always been very open. When I told them, they were upset for me but extremely supportive.
Of course, not everyone reacted in a positive way. One of my friends felt as though she would be “guilty” by association. For those who worry about what others might think, I draw strength from a quote by Dr. Seuss, believe it or not. He said, "Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind.”
Helper: What would you tell someone who is struggling emotionally with a diagnosis of herpes?
ML: Herpes is a common virus that’s treatable. It’s not the end of the world – you are no less of a person because of herpes. The stigma takes you and makes you feel imperfect. You can’t buy into that perception. You know people with herpes that simply haven’t told you about it – and you certainly know people who have it but don’t know. I told an extended family member about having herpes, and soon thereafter I bumped into that same relative at a herpes-related social meeting.
I’m at the point where I think of it as an inconvenience – I rarely get upset about it anymore. Granted, it’s not in the greatest location, but at the same time it’s affected me in other, positive ways. I’ve met people that I never would have met otherwise. I became more sexually aware and responsible.
I want to see more positive stores about herpes in the media with an educational focus. Society has to learn more about it and that the stigmas are not true. Approximately 25% of the population has HSV and most do not know it. It’s especially relevant now that we know HSV increases the risk of HIV infection three-fold. I believe it is imperative HSV testing be included in standard tests for STD’s.
But ultimately, it’s just a common virus. It doesn’t make you any different. It doesn’t have to affect your life unless you let it. My sincere hope is that people come to realize this truth.
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