Living Well & Thriving with HIV - Quotes from Our Community

It is no doubt that the negative portrayal of living with HIV/AIDS has had a lasting impact on the community. The continued fight against stigma, myths, and discrimination is evidence of this. While it is important to pay reverence to HIV/AIDS history and recognize the struggle that the community has gone through, we want to shed light on uplifting experiences.

In our 2^nd Annual HIV In America survey, we asked community members to share positive or uplifting experiences they encountered in their HIV/AIDS journey. Their responses reflected hope, loss, support, acceptance, challenges, and empowerment to live their best life. Read these quotes from H-I-V.net community members below.

Community, support, and giving back

Some of you talked about the support received from family members, loved ones, and other members of the HIV/AIDS community.

"I’ve met some wonderful individuals who have shared their experiences with me."

"I have found that volunteering to help newly diagnosed people to give them a little hope does my soul a lot of good."

"It’s nice to be able to talk to friends who also have it."

"Within the HIV community everyone is very friendly and understanding, and try to welcome you."

"My family and I became very close after my diagnosis, leading to long-term open communication of quality vs. quantity. I have stronger relationships with family and friends. I was able to go back to school with special finical aid set aside for people with HIV."

How has living with HIV impacted you?

The journey of acceptance

As many H-I-V.net community members have shared, accepting an HIV diagnosis is a journey.

"The moments leading up to and maybe after being told I’m positive were horrid. After accepting the unchangeable facts, I’ve learned to enjoy life still and continue smashing goals regardless of my status."

"I fell into a deep depression around the time when I was infected - possibly because of HIV. I was on antidepressants for several years, but once I realized that my HIV was well managed, I realized that I didn’t have to let it define or dictate my life. I got off antidepressants and started opening up emotionally with friends and family who I realized were very supportive. Now I have a deeper connection with them."

Prioritizing health and living life

Taking medication and adhering to HIV treatment is just one part of living a healthy life with HIV/AIDS. Some of you expressed gratitude for newer treatment options; many focused on the importance of health and taking care of yourselves in general.

"Now that my health is getting back on track, I've been able to enjoy life more."

"Doing my very best every day to live my best, fullest, and most authentic life."

"Having 1 medication once a day is amazing compared to past medication regimens. Been undetectable for many years. Feeling like there is hope with the new meds and that HIV/AIDS is not a death sentence, and I can live a long healthy life."

"I live a positive life, I love myself, and I would definitely make sure to always take good care because HIV won’t define who I am."

"I don't think about living with HIV. I think about living my life to the best of my ability. My HIV comes along for the ride."

"I deal with everything, I won't let it break me."

Opening up to new opportunities

An HIV/AIDS diagnosis is life-changing in many ways. Many of you shared how accepting or being open about your HIV status changed your life path, especially with career, education, or sobriety.

"I live openly with my status and do some public speaking/educational events."

"Since I didn't die in the 2 years I was given, I went back to school, joined AA, and now have a doctorate and over 30 years of sobriety."

"Living with HIV present-day has gotten better because I feel good and my health is much better. I can do things I couldn't do 25 years ago. I'm grateful to be able to work as NYS Certified Peer Worker and help others with medication adherence problems and also assist people with HIV testing. Very rewarding for me, and I'm grateful to still be here."

"It informed the rest of my life. HIV inspired me to get involved. I now work in HIV prevention and activism. It’s the best thing that ever happened to me."

Difficulties and challenges

Some community members were honest about the challenges that they are experiencing, from AIDS Survivor Syndrome to dating to mental health struggles. This is a stark reminder that although much progress has been made, we still have quite a ways to go in the fight against HIV stigma, discrimination, and serophobia.

"Hard to be positive when you're down on your feet all the time."

"Difficult to surround yourself with people who face what you are facing and have positive attitudes."

"Living in a rural area there is a stigma to having HIV. Have faced a lot of negative situations at work and in life."

"As far as the survivor syndrome, I do question why am I still here, yet still struggle and feel lost. I'm alive but not living."

"Dating is difficult with the HIV stigma. It’s still an emotionally difficult barrier to overcome."

Care to share your personal story?

Whether you are recently diagnosed or further along in your journey with HIV/AIDS, we want to hear from you. Sharing your personal experience is one way you can lend support to this online community! Click the button below to share your personal experience of living with HIV/AIDS.

The 2nd Annual HIV In America survey was conducted online from May through September 2020. Of the 568 people who completed the survey, 528 were people who have been diagnosed with HIV, and 58 were at increased risk of acquiring HIV.