I never knew this would happen in my life. I’m 27 years old now, and only recently found out that what I have is incurable, and the deterioration in my body can’t be stopped. I got COVID seven months ago, and it started with some mild, clumsy symptoms typical of long COVID. But at some point, I began losing collagen all over my body. In just one week, nothing was the same anymore.
My urine was constantly cloudy, but hospitals couldn’t find any signs of infection, proteins, or anything else that could explain it. Eventually, they ran more specialized tests and cultured it to test for waste products like hydroxyproline—signs of collagen breakdown.
And so, I’m literally peeing myself out.
I’m damaged both inside and out, and they’ve tried to stop it with immunosuppressants, even though I have no inflammation markers—but nothing helps, and it can’t be stopped anymore. I’m hoping for a miracle, that somehow my body stops the breakdown on its own.
For me, COVID triggered something that made my own cells turn against me. Just horrible bad luck.
I know tomorrow isn’t promised to anyone, but I never imagined it would all go like this—so brutally.
Thankfully, I’m getting help for the mental side of things. But God, I wish there was help for the physical part too.
I just wish there was hope—even if it was just 10 percent.
I want to scream as loud as I can. I want to run away. I want to do everything—but I can’t.
I still want to experience so much. I would give anything to have just one more year in perfect health, to live it to the fullest.
I watched the movie Soul (the Disney film) on someone’s recommendation, and I want to tell everyone: please enjoy every minute you have—things can change in an instant. Be kind to those around you. You never know when the last day might be.
TL;DR: I’m scared of dying. I don’t know how to deal with it. I know I’m supposed to accept it—but I just can’t.
Comments
Oh wow, that’s terrible and terrifying! Sending good vibes and prayers and positive thoughts your way.
If there is somebody with the same, or similar situation and knows a treatment outside hospital or knows a hospital anywhere in this world who can treat something like this please connect with me, this cant be it 🙁
I’m sorry. Sorrys won’t fix you, but I’m sorry this is happening to you. 🙁 what exactly are you afraid of? Dying or the pain? I can’t make any promises about what will happen, but eventually we’re all going to the same place. Some faster than others. What things can you knock off your bucket list still?
Prayers for you, I’m sorry you’re going through this
I don’t have much advice on the medical side. You can always get a second opinion, can’t really hurt. I know the medical care in my city is garbage. Worst they’ll tell you is what the first doc said.
As far as life, I’m sorry you’re going through this so young. Tell you’re loved ones if you haven’t. Let them support you as well as mentally prepare.
I don’t have words to make it better. There are not words that will make this better. Live the best life you can and enjoy as much of it as you can. Might help to look into counseling. The cycle of grief can be very hard. Wasting what time you have going through it just sucks so find a good therapist to help with that.