[UPDATE] I’m (27F) scared my friend (50M) is becoming isolated during a long hospital stay, but the stigma surrounding his illness (AIDS) limits what I can do
A Reddit user (27F) shares an emotional update on the death of her dear friend (50M), who was an HIV survivor and had been suffering from severe complications. Despite the stigma surrounding his illness, the user had been trying to support him during his hospital stay, offering companionship and comfort in his final days.
Now grieving his loss, she reflects on the impact he had on her life and the painful reality of his death, especially in light of societal prejudices about AIDS. The original post had highlighted her struggle with balancing her desire to help and the limitations imposed by stigma. Read the full story below.
‘ [UPDATE] I’m (27F) scared my friend (50M) is becoming isolated during a long hospital stay, but the stigma surrounding his illness (AIDS) limits what I can do’
In the original post, I described the predicament of my dear friend, a >30-year HIV survivor who suffered massive inexplicable treatment failure and was alone all day in the hospital because his husband was at work and he’d kept his condition a secret. I also described my quixotic effort to become his one-woman T cell cheerleading squad.
I’m sorry to report that my friend has died. After all that could be done was done, he went home and passed away surrounded by his loved ones. His suffering is over. That’s supposed to be the important thing. In the original post, I avoided talking about the suffering.
How his intestines had filled with abscesses and bacterial films and Kaposi sarcoma and God knows what else to the point where he vomited fecal matter. How he weighed \~80 pounds and had a bedsore that showed bone.
How the virus had invaded his brain in a way that might have condemned him to Alzheimer’s-like deterioration had he lived, even with the newest and best drugs. He’d stolen three decades from HIV and that b**tard was out for revenge. Call me a sweet summer millennial child if you like, but it was the worst thing I’ve ever seen.
Nonetheless, I’d be lying if I said I was taking his d**th well. I’m writing this from inside the Pillow Fort of Grief I built in my living room. Redditors have no way of knowing, but he was a wonderful, special person. I opened my heart to him for a reason. The world is a worse place without him.
I’m grateful for the advice of some of those who commented on the original post. I did ease up on the presents. When I visited the hospital, I focused on just spending time with him. We watched a lot of HGTV, and I would try to make him laugh by making fun of the questionable taste and skewed priorities of the couples on House Hunters.
I held his hand, brushed his hair, stuff like that. The last time I saw him, I told him I loved him and kissed him on the forehead. He could speak faintly at that point. He said, “you’re so good to me.” You probably have no idea what that meant; I’ve always thought of myself as a robot and a moral failure, and he knew it. He was the gift-giver in the end.
On social his husband is maintaining that he died of freak complications from routine surgery. I wish I could tell him he didn’t have to do this, but this very week an authority figure in town went viral for a deranged h**ophobic rant in which he said, among other terrible things, that AIDS was God’s punishment.
I feel like I’m trapped in an ’80s time warp, but minus all the fun parts with the synth music and crazy fashion. I don’t know what happens now. Clinical depression? Volunteer work? Befriending the husband? There’s a big old void right in the middle of my life. It’s the price you pay for caring, sometimes.
TL;DR rest in peace my beautiful friend.
\*\*\*EDIT\*\*\* Wow, this post exploded. I am o**rwhelmed by all the condolences and well wishes and unusable throwaway karma coming my way. You’re all the kind heart of Reddit. And you like my writing? That’s too much. Stop it.
People are asking why I think I’m a bad person. The answer is that I was diagnosed (probably correctly) with an autism spectrum disorder in my teens and told that my social deficits were caused by failure to develop the capacity for empathy. There is now tons of pushback on this theory of autism, but it was dominant at the time.
I was vulnerable and impressionable and I thought, “Oh no, I’m a s**iopath. I’ll have to spend the rest of my life hiding how rotten I am inside.” I m**e about my moral fiber the way other women m**e about their weight. I’m doing it right now, fretting over whether this post is narcissistic. My friend showed me another side to myself, a bright mirror. He changed my life. Losing him is heartbreaking.
Check out how the community responded:
foxeared-asshole − I’m so sorry for your loss. Any terminal person wants to be surrounded by friends and loved ones til the end, and you were no doubt one of the people he was happy to have. You weren’t afraid to touch him and give him simple physical intimacy of held hands and a kiss to the forehead. That must have meant so, so much.
I’m also sorry your town has a case of the Terminally Stupid Ass-Pustule in the form of that homophobe. I’m a vindictive little queer so I’d like to think that he probably won’t die surrounded with love and attentiveness like your friend.
Isimagen − Thank you for being there in his time of need. People take HIV far too lightly these days. Many that should be on PREP are not and play with fire. Yes, it’s likely you’ll live a long and healthy life with it; but, your friend shows that drugs can and do fail at which point it progresses to AIDS.
Seeing someone die like this changes you. Imagine a whole generation of gay men dying because people weren’t sure what was up at first, and when we did we had people who didn’t care. Politicians doing nothing or calling it God’s wrath.
Now, there are countless people of all sexualities infected. It’s treatable. But we need to remember how easily that can all go awry in the right circumstances and your life will wither away. Again, thank you for being there and to witness his life.
othellia − You are a lovely caring person, OP. I’d say let the husband know you’re there for him if he needs/wants, but otherwise focus on yourself now. If you find yourself depressed for longer than two weeks, try to find a counselor or perhaps even a grief support network.
The hospital might know some specifically tailored to relatives/friends of people who’ve recently passed. Sometimes the act of simply talking about your feelings and experiences and/or listening to others is what you need to process them and begin to move on.
Volunteer work also seems like it could potentially help. Be careful of what kind of volunteer work it is though–volunteering at hospitals or with the homeless can invite the same “price you pay for caring” feelings re: the situations that various people are suffering through. It’s easy to feel frustrated that you can’t make more of a difference. Whatever you decide to do, take care. 🙂
stefaniey − Thank you for being there for him.
PanningForUsernames − As well as being a very kind and caring person, your writing is wonderful. I don’t know if you already do, but maybe you could use it as an outlet for some of the things you are feeling but can’t share. It’s beautiful – maybe that would be a nice way to share your support with the husband of your friend, too (if you think it would be appropriate). I’m sure he would love to have such a thoughtful reminder of how special his husband was to other people as well.
stayonthecloud − What happens now? A career in writing. Start with writing down all the stories from the course of your lives together and share it with his husband, to help remember him. Stories from people’s lives are some of the most precious and ethereal things in this world, and you have the mark and style of a powerful storyteller.
Atalaunta − I’ve always thought of myself as a robot and a moral failure, and he knew it. He was the gift-giver in the end. You have acted the opposite of how you think of yourself here! You stood by a terminally ill person until the very end for the sole reason of giving him your undivided attention and lovingkindness.
To simply make him feel loved and seen, without any personal gain. Being present with someone who is terminally ill is a very hard thing to do. Yet you did it anyway. You gave this man your unjudgemental support when he suffered. The best of gifts and, in my humble opinion, there is not much to top that off when it comes to morality.
UkeFunkBand − I am very sorry for your loss. June 30th will be 5 years since my oldest sister died of AIDS. It was probably the worst thing I have ever seen, and I had seen d**th before. Afterwards, my family all decided to tell people she died from pneumonia. It’s 2019, the disease has been around for decades.
Did they think it would be more honorable had she passed away from cancer? I don’t advocate, and I don’t tell people on purpose, but I’ll never lie when people ask. I’m so happy that your friend was able to live as long as he did. I really hope in our lifetimes, they will continue to make advances for treatment and maybe vaccines or heaven knows, a cure. Sending good thoughts your way.
OneSmolBean − That was a big kindness to him. Let your friendship and the solace you showed him be a balm for your heart now. It’s going to be tough so just mind yourself x
supers0ldier − I would just like to say that people who lost loved ones during the AIDS crisis would probably agree with you that it’s one of (if not the very worst) things they’ve ever seen. I’m so sorry for your horrific loss and that your dear friend had to suffer through one of the absolutely worst viruses imaginable. I hope that you can find comfort in the things you both enjoyed and the happier memories you have of him. I hope his husband can one day openly speak about what happened without fear.
The loss of a close friend, especially under such painful circumstances, can leave a deep emotional void. Have you experienced a loss that made you question the way you relate to others or yourself? How did you navigate the grief and find a way forward? Share your thoughts in the comments below.