I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
BrokenCogs 17 minutes ago [-]
I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
TZubiri 54 minutes ago [-]
I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
ETH_start 2 hours ago [-]
It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
ahhhhnoooo 1 hours ago [-]
Please be careful not to put words in my mouth.
ETH_start 59 minutes ago [-]
Yes I was just adding, was not contradicting.
abracadaniel 2 hours ago [-]
That long duration stress from caring for a loved one with a potentially fatal illness is difficult to describe. I remember sharing that same driving thought of “if this goes south, will I honestly be able to say I did everything I could?”
esseph 1 hours ago [-]
How are you doing now? How long ago was it?
curioussavage 2 hours ago [-]
My girlfriend also has this and I just found out my coworker has been dealing with it for some time. Has me wondering just how common it is
ElProlactin 1 hours ago [-]
Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.
LoganDark 2 hours ago [-]
People will go to the ends of the earth and back for someone they truly love. (Some people will even do it for hate, too!)
ElProlactin 1 hours ago [-]
I had a (micro)prolactinoma that was successfully treated with medication. Even though it was nowhere near as "bad" as this man's girlfriend's, getting it diagnosed took almost 2 years and the possibility of prolactinoma was dismissed outright by several doctors.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
Hopefully with a better end.