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Real members of myHIVteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

The Worst Things For Me Living As A Long Term Survivor Of 32 Years:

The Worst Things For Me Living As A Long Term Survivor Of 32 Years:

With HIV now looked at as a manageable disease, and the introduction of PREP, there are a handful of us who are the final living proof carrying the history and legacy of the original AIDS generation. The majority of Long Term Survivor's they say are in their 50's or 60's, I am in my sixties so that fits my category. But I suffer AIDS Survivors Syndrome in a major way which has inevitably isolated me into feeling completely misunderstood by my friends, and family. It is fair to say most of my… read more

A myHIVteam Member said:

Thank you for sharing this! Thank you for your bravery and strength to fight each day! You matter!

posted over 2 years ago
A myHIVteam Member said:

We have all lost friends end book one and then stigmatized a lot of people don't understand what it's like the isolated from All That You Used To Know. But you have to keep your head up high and keep stepping forward yes we have are hard days and yet again we have a good days unfortunately they called that life. I've lost family members who no longer want to be around me Wonder Woman still alive friends who don't understand I guess that means they weren't friends any ? But I'm going to hold my head up high and not let this break me and ask God every day to keep his hand on me.

posted over 2 years ago
A myHIVteam Member said:

Thank you for sharing your story. We are only given what we can handle and with our support, together we will survive 🤗🤗🤗

posted over 2 years ago
A myHIVteam Member said:

I just stopped by for a quick second to see how everyone was doing and this particular subject is near and dear to me as I'm one of you dinosaurs, LOL. It does make my heart sing to hear all of you sharing and caring for one another and I feel blessed to still be hear and able to relate to most of you! This Oct.15th I will be starting my 34th year as a LTS ! I as well get confused and forgetful but to me it's just another stage in life! Memory loss and confusion are a normal part of growing older but when you add all the meds we've taken for years it's no wonder we're confused! I have purchased a 3 tier bookshelf to put beside my recliner to put all of the things I keep losing and now I know I need only to look there and whatever I need is going to be there! For me all I have to remember is it's put everything as soon as I walk in the door on that shelf! I have so much more to share but must say goodnight and God bless you all!

posted over 2 years ago
A myHIVteam Member said:

@A myHIVteam Member Greetings Brother🤚
I know this was posted over a year ago when we started to get affected by the pandemic. I would like to contribute. It is never too late in doing so.

I am so sorry what you are going through each day Jeff. It gets to the point where you get tired of it all. You have a long history of numerous illnesses that I wouldn't want to be in your shoes but I need to put those shoes on if only to understand better. I am trying to understand you better my friend and now I can see where you are coming from. I misunderstood and I am sorry.
You are a warrior of the highest order living bravely and courageously facing a lot of adversities. Forget the life expectancy timeline, you have beaten it numerous times, it no longer relates to you.
I am also sorry for the way you were treated by your ex in that cold and uncaring manner. How heartbreaking that must have been especially in your time of need. I wished I was there for you Jeff, and I am now. Yay! Team!
I have come to a better understanding after reading up about "Aids Survivors Syndrome" I never thought there was a thing. Little did I know. I was ignorant of the facts and I intend to educate myself further. I thought I knew all I needed to know living with this condition. I think I know enough for myself, but to understand others will definitely make me a better person.
I cannot compare with you on the number of friends that was taken by this disease. I knew only 4 people that were close to me from school into adulthood that died from it. Although my partner, Timmy🤍 had HIV as long as I have had it, he passed away in 2018 not from HIV but from another condition.
In perspective, the gay community in Hawaii is small relative to our overall population. (per capita)
The impact of losing 100+ friends and acquaintance's is unfathomable. How can you deal with this? You have fortitude💪. I believe because of your love for others you go on.
Try to seek solace in knowing your friends are in a better place and no longer suffering. I look at it that way, and we all have our own beliefs for the after life. It gives me assurance and peace☮ believing this and allows my life path to remain clear of obstacles. Have Faith in Your Creator and Yourself. Your creator would be who you believe is the higher order, unless you are atheist then I understand.
For me, my Creator is God and the Son of God, Iesu Cristo
You take care my Friend. I am Happy and Glad you are a part of my Team.
Much Love and Aloha! A Hui Hou! John

posted over 1 year ago
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