Write a Comment
13 Comments
I've been living with HIV for 25 years and had AIDS, who knows, I could live for another 25 years, but I'll never be a "long-term survivor".
I’m a survivor of HIV. I’m also a survivor when I wasn’t HIV I survived living in a world that did not support my sexual orientation I survived a second pandemic and I have survived a family that was mentally and emotionally abusive. Being a long-term survivor is for me a life of loneliness and memories of those who are gone. If I’m not a survivor, what do we call the ones who didn’t survive? I called them my brothers.
As the leader of Let's Kick ASS Palm Springs (AIDS Survivor Syndrome), I've often used the term "witnesses to the AIDS plague years" to be more inclusive of those who know first-hand the trauma we experienced when an HIV/AIDS diagnosis was a death sentence. LKAPS.org primarily serves people aging with HIV and long-term survivors.
I have been HIV positive for 21 years and am 51. I am hesitant to say long term survivor as I had the good drugs, yet at the same time, I lived through the 80's and have a sense of the worst of humanity. That said, I look at long term survivors and those of us who are alive today. We are the first generation to live with the disease, the first to know it's not a death sentence and to have the opportunity to live a long healthy life. With this, we must learn how to age gracefully with HIV/AIDS.
I think the answer is right in the article when I read. "HIV-negative long timer." That seemed to set right with me, maybe not with others but it's short and concise. Respectful and right to the point. Older Adults, Long-term Survivors, Lifetime Survivors and Neg. Long Timers.
I was diagnosed with CMV in 1978, First infection. Doctor did not know why. Started AZT when it first became available. Almost killed me. No formal diagnosis until the test became available. I have been thru every drug that came along after with experimental testing . One point had 20 T cells! I live today as a man of 77, taking lots of HIV drugs and maintain U=U for last few years. Am I a long term survivor? More than half my life now with this. I think I am a long, very long time survivor.
I recall care providers early on that were heroes to me and were practicing back in the day. There have been countless and unnamed and likely unacknowledged heroes in this fight I’m quite sure. I am on the cusp of the def of a long term survivor and would like to add that even when the new meds were available, not all could get them and the protocols were more restrictive so some delayed treatment which they now understand to cause perm damage. Splitting hairs is hard.
kycowboy
Let me share my personal experience with you, a different perspective. I spent my entire adult life running from AIDS, never once did I feel guilty about not getting it. Acquired it two years ago, age 61, feel a little bit guilty about it. Bottom line, the only longterm AIDS survivor's are the ones who have it and are still with us. The other's are like I used to be, standing on the sideline offering support and love. God Bless Beaumont. What a staff!
January 28, 2025 • KY