Being diagnosed with a life-threatening illness is a devastating event in any person’s life. When it comes to an HIV diagnosis, it’s even more agonizing. For some, it can lead to a downward spiral of agonizing depression and death. For others, it becomes a fight for life and purpose. On Saturday, Oct. 15, 2016, the advocacy group SisterLove gathered women who have survived with an HIV diagnosis for at least 20 years. These women are not just victims of HIV, they are activists and educators against the disease as well as motivators. Rolling out spoke with 10 of these women at the event. Here is the story of Kathleen Griffith.
Where are you from?
I now live in Peoria, Illinois.
Why did you become an HIV activist?
I was diagnosed in the 1990s while still in college. I had a partner who was very ill and the doctors did not know the cause, he lived in Tennessee and he was straight and no one tested him. After a series of hospitalizations, he was finally tested and it was determined that he had AIDs and I decided to get tested, which was a no-brainer, it was then that I discovered I had HIV.
How did your diagnosis make you feel then and now?
Then I was 21 years old and I was told I had two years to live. I was in college and trying to plan my life and now had to determine if I was going to even have a life; it was pretty traumatic. I had to watch the man in my life that I was planning to marry have to go through what ultimately killed him; it felt like another world. But this was part of my story. How I feel now is empowered. I have had some of the most life changing moments through the people I have met and stories that were shared. But I am also on dialysis and am currently on a transplant list. I wish I had learned some of those stories before I had HIV but at the same time, it has blessed me in so many ways that I can’t even put words to it.
How much has it cost you to stay alive with HIV?
Just in HIV medications alone, it has cost me close to $30K per year to stay alive. So 26 years times that gives you an idea of the cost.
Do you think young people today appreciate the risk of HIV?
No. We have done a very poor job in America. The emphasis on young people has been to not have sex [so much] that we don’t talk about risks and ways to protect yourself and others. We don’t empower our youth at all. Just by nature of being young, you think that you’re infallible, nothing can hurt you. That’s part of the joy of being young, going fast and playing hard.
What has been the impact of Truvada and PrEP in your community when it comes to HIV risk and sexual behavior?
I live in the middle of Illinois and doctors are just know beginning to prescribe PrEP, in addition, many don’t even know about it. For those who do know about it, not many are prescribing these drugs. So it has not had anywhere near the impact that it could or should. That being said it is now being pushed on a bigger scale. It does have an impact in the gay community and now women are being encouraged to use it on a larger scale. There are doctors who are refusing to give the drugs because of “shoulds.” What I mean is that some doctors are not prescribing because they feel a person should not be having sex or a person should not be having sex with someone who is HIV positive. So when it comes to women we have even more work to do.
Are Truvada and PrEP a gateway for risky behavior for some individuals?
No, and I say that because there is so much compelling research that people who get the drug are very well informed and very educated. It is not the young teens who are getting the drugs and wildly having sex. those two things just don’t go together. The people who are HIV positive and having sex are making educated choices and taking calculated risks it’s a conversation that is being had between couples.
What would you like to say in closing to young people who may have HIV?
I often struggle with this because I am no longer young but I was young when I was diagnosed. In many times in my journey, I have felt alone and been alone. I would say seek out the information , seek out people who support you and seek out emotional support for that part of your journey. Because many of us, in the beginning, had to do this alone but we know have much-needed help in support groups , use social media find the people who can help support you. the information is there.