Girl Power Can End HIV

Every year on March 10 — and throughout the month of March — local, state, federal, and national organizations come together to show support for women and girls impacted by HIV and AIDS. National Women and Girls HIV/AIDS Awareness Day (NWGHAAD) sheds light on the impact of HIV and AIDS on women and girls. This year marks the 13th annual observance.

The 2018 NWGHAAD theme, "HIV Prevention Starts with Me," emphasizes the role everyone — women, men, community organizations, health care professionals, those who are HIV-negative, and those who are HIV-positive — plays in HIV prevention. There are steps you can take to protect yourself, your partner, your patients, family, and neighbors from HIV infection.

On the following pages we talked to the women at the forefront ending the epidemic how HIV impacted their lives and why it's so important to talk about HIV vis a vis women.

To learn more, visit their site here.

HIV honestly changed my life for the better believe it or not. In the beginning I was so embarrassed and ashamed because of the stigma that was and still is associated with HIV but as I began to forgive myself, love myself and accept myself things got easier.

I gained the strength to take a stand to tell my personal story publicly and educate others. It was a very scary step to take — but not only did I have support — I impacted the lives of others through my story. That in turn gave me strength, confidence and a feeling of wholeness. As an African-American woman living with HIV I have been awarded opportunities to speak at various universities, schools, health events, on radio stations, news stations and in magazines.

Accepting the diagnosis of HIV in my life and accepting who I am has given me the strength to be a voice for the voiceless. HIV in my life has helped me to stand up for the rights and respect of other people living with HIV.

I penned my autobiography Standing On My Healing: From Tainted To Chosen and I know I would not have written, let alone published, a book had it not been for the strength I gained as a woman living with HIV. I am also currently working on my Ph. D. in Public Health with a concentration in Advocacy and Leadership,

 

I don’t think I would have accomplished any of these things over the last 16 years if I didn’t have HIV.

 

It’s critical to draw attention to the HIV transmission rates among women because new HIV diagnoses among women and girls are so skewed in the Black community. You have to ask yourself, why is that?

 

In my opinion many women are so busy taking care of other people that they don’t take the time to take care of themselves. The stigma of HIV deters women from getting tested and knowing their status, some still do not have access to reproductive and sexual health care. In addition, many of them are dealing with poverty and sexual violence. It is important that health care providers and health care workers are trained in cultural competency so that they can openly communicate with women—either when they are getting a regular check-up or they go because they are ill. It is important that we as a community work together with physicians, agencies, advocates and allies to help women get care, stay in care and become virally suppressed will help in decreasing that rates of new HIV infections.  

 

My  husband (now ex) was who I got HIV from. He told me he'd had a negative HIV test — It affected my ability to trust for a long time.  Every life decision I make has to take into account how it will affect my access to healthcare and ability to get my medications.

One of the hardest things has been how it has affected my relationships. I've spent 20 years trying to figure out who to tell, when to tell them, and how to do it. I've been so lucky in that it has had very little effect on my relationships. Only one person had difficulty remaining in a romantic relationship with me because of it, and I've only had positive responses from family and friends although, of course, it's been very hard on some of them. Often it just doesn't seem like there's a good or appropriate time. Over time I began to forget who knew and who didn't. I would worry that friends would feel betrayed because they heard it from someone else and I hadn't talked to them about it myself.

I still struggle with whether/how/when to let my clients and colleagues know.

Some days I just want to wear an "HIV+" t-shirt every day for the rest of my life so I never have to tell anyone, it's just out there from the start.

Until recently it has interfered with my ability to be intimate with others due to fear of infecting someone else. I'm so grateful for ongoing research and now the U=U project that has made it clear that since my viral load is undetectable I don't have to worry about passing this on to anyone else. 

In some ways it has had a positive effect on my relationship with my long-term partner because of the conversations it opens up for us. We watch movies like Philadelphia, The Dallas Buyers Club and The Normal Heart and are so grateful for the life we're able to share, and so heart-broken for those who have gone before me.

I was so lucky that the first cocktail of medications was approved by the FDA a month before I was diagnosed, so even though I nearly died of Pneumocystis Pneumonia before being diagnosed, I was started on an effective medication regimen right from the start and didn't have to suffer the AZT poisoning so many others did.

My HIV status has also brought me and my partner closer because he's always been so supportive of me and has honored my choices about when to disclose my status to his children and our mutual friends, as well as how I have chosen to handle disclosing to employers, colleagues, etc. These are difficult decisions and conversations and his support is invaluable.

It has also made me appreciate my health more than I would otherwise. Having been so sick and weak for so long, I cherish being able to hike, bike, ski, take our dogs out for long walks, do yoga, etc. I'm grateful to be able to be active and I do everything I can to support my physical and mental health. It's not to be taken for granted!

 

I think many people still tend to think of HIV/AIDS as a disease of gay men. This increases stigmatization against both the disease (due to homophobia) and gay men (because of judgment that only they contract and perpetuate this "horrible disease" so they must be "bad").

It also makes it easier for people to discount the disease as something that "won't happen to me," and that view, that ability to distance oneself from it, gets in the way of funding for research, treatment and education. I think when people realize it truly can affect anyone, regardless of what you look like, sexual orientation, socioeconomic level, etc., that's when the general public will get behind prevention and cure on a broader level. It's also important to draw attention to transmission rates among women so women will see the importance of protecting themselves to the level that's possible and the importance of getting tested, as well as for the medical field to see the importance of testing women.

I had been going to the ER every few months for about a year due to respiratory and GI problems and was not tested for HIV until being admitted to the ICU where, thankfully, my nurse had had experience treating patients with AIDS. And this was in Palm Springs, CA, in the late 1990's!

If I had been a male I don't think there's any question that AIDS would have been considered as a diagnosis much, much earlier.  

 

 

 

 

 

You can see Shaney McCoy's site Ready to Feel Good here.

 

HIV changed my life in many ways. It has helped me to realized that every action we take has a positive and negative reaction that equally have lessons to teach/share. Not just for ourselves but for everyone. HIV also helped me to find my voice and purpose in life by openly and willingly, sharing my experiences and vulnerabilities in an effort to be utilized as instruments to provoke and spark positive behavioral changes for our young women. I have no fear of retribution for one reason, God is always with me. 

Women are the bearers of life, while also having the ability to mobilize, unify and be the death of this disease and other social injustices for everyone.

I have a motto: Minutes +/- Moments = Lifetime

It takes a Minute to complete a task, but a Moment to make an impact on a Lifetime

Awareness is that moment! I pray this helps in your efforts to bring awareness to this important cause.

 

Deirdre Johnson is the founder and CEO of  Deirdre Jay Speaks: A speaking company on all things in life.
 

 

 

HIV has given me a reason to help educate others and its so important that women are aware of the risks and the easy ways to NOT become HIV-positive.

HIV has changed my life by strongly Influencing my career path as an HIV Advocate. Throughout the day I use media and in-person encounters to share insight into what's happening around HIV.  

It's important to draw attention to the HIV transmission rates among women because diagnoses among women are primarily attributed by heterosexual men who have no attention drawn to them.
 

When I think about how HIV has changed my life, I can not help but be very thankful.

I know that may sound odd to the average or non HIV-positive person, but I do. 

At first it was very scary for me and my entire family. I was diagnosed with AIDS and was given two weeks to live. Fast forward eight years and I am happily married with three kids.  We had our last baby two years ago and we are very thankful to say that she is HIV free.  I can honestly say that I have Never Been happier than I am right now in my life, even being HIV positive!

It's important for everyone to get tested so that they can begin the road back to reality and happiness. HIV/AIDS is truly not a death sentence.
 

 It is hard to say how HIV changed my life since I was born with HIV.

In my experience, HIV is the norm. I can attest to the negative impact HIV has had on my growth over the years. Puberty and adolescence are difficult stage for everyone, now add on HIV and HIV stigma from medicine to disclosure.

I did not come to terms with trauma and the stress HIV has caused over my life until I hit 25 and attended the United States Conference on AIDS. I met amazing women who took me under their wing and helped me to cope, before then HIV was a big bully in my life.

I dealt with anxiety and depression and contemplated suicide multiple times, the scars I physically have on my arms are a grim reminder of what happens when humans are not given respect and dignity.

I wasn’t able to sign up for sports or have a relationship, the weight of HIV stigma was heavy on my parents and, unknown to me, I carried that fear and shame too.

My work in the future is to encourage and empower Positive women to enjoy their sexual journey. Too many times, women have barriers that keep them from negotiating safer sex practices like male or female condom usage. It is imperative that we bring women to the table and draw attend to HIV transmission rates among women because women already face hardships socially and economically compared to their male counterparts, now compound that with the social justice component of HIV. In the beginning of the AIDS epidemic women’s narratives were not included and while there have been strides, there is still more work to be done.

Positive women need access to better mental health services that help them cope with their diagnosis from a competence clinical. Positive women need access to mentorship and guidance from other women who are able to thrive with HIV.

Positive and negative women need to be heard and valued in everything related to HIV. Otherwise, transmission rates will keep raising.

 

I was diagnosed with HIV in the early 90s which was the catalyst to learn more about this diagnosis. It was very hard to really understand the next steps over my life. I began to educate myself and becoming involved with my community, support groups and working in the field of HIV. Living with HIV for me is all about surviving and living with it for 20 years.

I have empowered my community and women who are at the highest risk of becoming diagnosed with HIV.

Living with HIV has been a journey that started out with fear of the unknown and how to process the medical diagnosis as a young adolescent. I've became a champion in my community and around the globe to empower women, men, youth, and the LGBT population. Making awareness for those who have the biggest barrier of

"Who can I tell?” How to help reduce stigma in the most meaningful way.

"Life for me has not been a crystal stair case…" Langston Hughes

My life has changed to accept people for who they are and not judge no one. I've been able to work alongside some phenomenal experts and gravitate to my community to provide hope, understanding, and leadership.

Living with HIV doesn't define me or my character.

As we have embarked on the U=U campaign it had provided an educational approach for a person living with HIV to engage in love in a meaningful way who are actively on the medication 100 percent of the time for more than 6 months or longer.

The journey of change is also building hope, love, and peace, for everyone.

It is very important to draw attention to the HIV transmission rate among women because we are still becoming exposed to the HIV virus. We have to own our bodies and reproductive health in a way that we care about us. We can't sit still and do nothing about the alarming rate happening among women. Women issues are the movement that surrounds us with questions of how do we as women focus on self care, economic injustice and more. Women issues are as important especially with reproductive health and gender norms associated with all population in our communities. Women perceived themselves of being in a monogamous /heterosexual relationship and finding out later down the line. The man she's been intimate with ultimately identifies from the MSM population. This is why I truly believe the HIV transmission rate among women need more attention and interventions for all women in American and around the globe. This is a true barrier for the world how will we end AIDS by 2020?

 

HIV has changed me in so many way in the last 19 years.

First and most important it has made better person over all.  Before I was diagnosed I was very narrow-minded, some-what prejudice person.  HIV has opened my mind to different people, races, cultures and lifestyles.

Ironically, it was some of  the groups of people I was prejudice of who were the first ones to help me, accepted me for who I am, and support me in everything. They even encourage to do things and get out of my comfort zone.  Because  of this I sit on many HIV boards, speak up and out, and even civil protests.

I am member of PWN—USA and past co-chair of the Ohio chapter, U=U steering committee,  PJP advisory board,  and many others.   It has been a blessing to have a very supportive HIV family.

It very important that attention should be up about women HIV transmission rates are because the public needs to know how serious the epidemic is.  Women need to know there are other women out there for support to get through that first shock of the diagnosis and the subsequent challenges.

Often in the media and in science women are overlooked because of the state's funding for programs goes mostly where statistical data is the highest. Women also need to know what is out there to help them, know their rights, and to protect themselves from discrimination, and criminalization.

 

 

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