This just hasn’t been sitting right with me since it happened. Though I will not mention names, in the best interest of myself & my ability to speak openly I unfollowed & unfriended this person on social media outlets.
This is something I don’t do lightly, especially when it’s someone I’m in groups & share diseases with, but in this instance it just felt like the right thing to do.
First, let me just say that I realize I might have had a bad reaction to what I saw, but I tried to handle it in the most sensitive means possible from the very outset.
Someone posted a GoFundMe for a friend who had passed, but the first red flag that went up for me in that post was something referencing “medical expenses were going to be high, ESPECIALLY since this person was an organ donor” (rather than a general rest in peace or please consider donating to offset my friend’s medical & funeral costs message.)
Now, this generated some comments that perpetuated some organ donation myths. So I shared what I could from Mayo clinic & organ donation facts from UNOS with the sole intent of busting that particular myth & providing facts to the people who were commenting. The facts are below:
Myth: My family will be charged if I donate my organs.
Fact: The organ donor’s family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient. (Mayo)
Fact: There is no cost to the donor’s family or estate for organ and tissue donation. (UNOS)
What I was not prepared for was the response that came from that.
Basically stating that this person felt that the family should not have to pay other hospital costs, or any with that particular hospitalization. Which I understood, but it also seemed to intimate that ALL of these donor’s expenses should be assigned to the transplant recipient’s insurance. The costs for the whole hospitalization in its entirety (from the start), not just the procurement & donation expenses.
Maybe I misunderstood, but I didn’t agree with that. I pointed this fact out again (because I can’t assume but think that the life support to increase the viability of the organ would be covered & assigned to the transplant recipient’s insurance as part of procurement & donation costs), but she refused to accept the facts as facts.
The fact remains that even outside of transplant, anytime someone is hospitalized & for whatever reason they die, their personal health insurance pays those costs to the point of their death.
The event that led to the donation is often not made known to the recipient, & while I understand in theory what she was driving at, I think it’s insensitive to assume that ALL costs should be automatically paid by the recipient, period.
Keep in mind, I’m not being callous or insulting to donors when I say that.
I understand this is harder to follow in a post with words so just bear with me while I try to give the full scope of the situation & this conversation & how it headed downhill quickly after I debunked the myth.
When I said something general to effect of what I outlined above & asked some more questions (using my own personal experiences to provide a clear example), I received a very venomous backlash.
I won’t put it to words here but the basic gist was telling me to take a good hard look at myself for even asking her to clarify her stance. I was also chided for not putting any of this dialogue in a private message.
Yet, I didn’t start this “discussion” to begin with in regards to wrangling over who pays & whose responsibility it was. I was simply replying to what she said & then trying to understand her point because it wasn’t clear to me.
While to a degree that’s true that things are best left alone or said in private, if someone is perpetuating myths to other people that are anti-donation, I feel that debunking them in public is appropriate (even with just posting facts like the above) because I wouldn’t want a potential donor family to reconsider due to bad information or a myth. I said that was the only reason I even replied in public & asked for clarification.
I wasn’t being confrontational. I was just trying to outline the process from the other end. I made it clear that I meant no disrespect to the friend or donor families in general with any of my comments. Merely trying to understand her point of view. Yet I was failing to see how someone else’s hospital expenses for care & events not related to the actual transplant & organ procurement were my (or another transplant recipient’s) responsibility, simply because we are in need of an organ?
Her comments led to this insinuation. I only used myself as example or test case so I could clearly outline my questions & concerns in an attempt to understand her side of the coin more clearly which she still failed to outline. So we were at an impasse.
After that verbal backlash, I gave up & removed my comments except for debunking the myth.
Later I saw the post in its entirety (including the GoFundMe link) was taken down off of her page.
While I understand this is a sensitive subject, I also felt the response I received probably was borne out of grief, but was quite judgemental & strong. I was merely trying to understand her point of view concerning donation, NOT to disrespect her friend’s memory or her selfless gift.
I only backed down because I agreed that the particular page was not appropriate to continue the conversation on, however after the one-sided dialogue that took place I didn’t feel much like continuing the conversation at all, even in private.
I’m not going to play tit for tat, but it upsets me when people make pat assumptions about the the donation & also the transplant processes without knowing any facts about it or about the situation on either side of the equation.
The whole thing just struck me wrong because the underlying message that was being sent overall from the start with her entire message was “If you’re going to donate your organs, you’ll pay the price for it.”
Which I think is disrespectful not only to her friend, but fellow donor families & transplantees alike.
I let it go, but I felt it was at least worth another organ donation myth busting post.