Friends and medical conditions. (Epic length) Addl Info p51 & 58

[Twik]

Honestly, I really can't compute how responding to a "I have been diagnosed with X and treatment is going well" comment with a "well doctors misdiagnose all the time" comment could possibly be construed as helpful. What am I missing??

That's the thing, though, we don't know that it was "I have been diagnosed with X and treatment is going well". From the info in OP, it could just as easily have been "Scared and need hugs.. just got diagnosed with a brain cloud!"  (points for the reference?)

But is it really supportive to respond, "Oh, doctors don't know anything - you don't likely have a brain cloud, you just have to eat better/exercise more/stop letting a pretend illness excuse your lack of care of yourself"? That's very different from "Maybe it's not as bad as it sounds". Telling someone with a scary diagnosis that they most likely don't have that illness is incredibly dismissive, rather than supportive, to my mind.

If someone has, say, diabetes, or cancer, the best way of dealing with it is not through denying that the disease exists. A supportive friend asks "what can I do to help?" not "No, you're wrong, you don't have that".

[TurtleDove]

Maybe it would be helpful to this debate if the OP posted her exact wording and the exact wording of her friend.

This, absolutely.  I agree that the OP likely read her own perspective into what her friend actually said.  Given the friend's shocked response to being "called out," I would be surprised that the friend intended the OP to be upset by what she posted and instead expected her to be comforted. 

[Yvaine]

Maybe it would be helpful to this debate if the OP posted her exact wording and the exact wording of her friend.

This, absolutely.  I agree that the OP likely read her own perspective into what her friend actually said.  Given the friend's shocked response to being "called out," I would be surprised that the friend intended the OP to be upset by what she posted and instead expected her to be comforted.

Well, but people who are annoying health busybodies almost always think their friends will be pleased/grateful/comforted by their unsolicited advice. I know a woman who believes some far-out things--in order to not dip into real medical advice, I'll make up an example. Let's say she thinks root beer floats cure cancer. Every time someone on her friends list or their loved ones post about cancer, she pops onto the thread to tell them to drink root beer floats because it'll knock that cancer right out. She's been doing this for years, probably decades, and has never understood why people ask her to stop. She still thinks she's helping and the person is just ungrateful and then starts over again on the next person.

[bah12]

Maybe it would be helpful to this debate if the OP posted her exact wording and the exact wording of her friend.

This, absolutely.  I agree that the OP likely read her own perspective into what her friend actually said.  Given the friend's shocked response to being "called out," I would be surprised that the friend intended the OP to be upset by what she posted and instead expected her to be comforted.

Well, but people who are annoying health busybodies almost always think their friends will be pleased/grateful/comforted by their unsolicited advice. I know a woman who believes some far-out things--in order to not dip into real medical advice, I'll make up an example. Let's say she thinks root beer floats cure cancer. Every time someone on her friends list or their loved ones post about cancer, she pops onto the thread to tell them to drink root beer floats because it'll knock that cancer right out. She's been doing this for years, probably decades, and has never understood why people ask her to stop. She still thinks she's helping and the person is just ungrateful and then starts over again on the next person.

And that's the thing that gets me.  THe comment may be well-intioned, but when someone says "It actually doesn't help", the 'friend' should take that into account.  Instead, it seems there's this automatic offense and the one that is needing comfort is just being 'over-sensitive'.  In other words, no accountability or recognition that what they say to comfort should be adjusted.  Instead, everyone needs to realize that they mean well and let them continue to be hurtful...because, afterall, they are "trying to help."

ETA:  I went back and re-read the OP...and I didn't catch the first time that the friend actually responded that because she was once misdiagnosed, she does "know what she's talking about".  That's not paraphrased.  This leads me more to believe that she wasn't going with a "It's not as bad as it seems" post but more what I thought which is "The doctor is wrong.  They are just labeling something so that you feel better" (hence the ADHD is just code for "naughty kid" comment).  It would have read differently if she said something like "I was misdiagnosed for something similar once.  If you're feeling uncomfortable with the 'label', then know that a second doctor my not come to the same conclusion."

[citadelle]

From the info in OP, it could just as easily have been "Scared and need hugs.. just got diagnosed with a brain cloud!"  (points for the reference?)

Joe Vs. Volcano?

[Yvaine]

ETA:  I went back and re-read the OP...and I didn't catch the first time that the friend actually responded that because she was once misdiagnosed, she does "know what she's talking about".  That's not paraphrased.  This leads me more to believe that she wasn't going with a "It's not as bad as it seems" post but more what I thought which is "The doctor is wrong.  They are just labeling something so that you feel better" (hence the ADHD is just code for "naughty kid" comment).  It would have read differently if she said something like "I was misdiagnosed for something similar once.  If you're feeling uncomfortable with the 'label', then know that a second doctor my not come to the same conclusion."

This. There are ways to approach it if you really do think someone has a medical issue that is being misdiagnosed, and pontificating all over their Facebook post is not it.

There's a rare condition that, for an odd coincidental set of reasons, I am really familiar with. Some years back, I became convinced that a friend of mine had it, because she had a number of symptoms that lined up with my experience of this condition in others, and no one could figure out why she was having these issues. One day she was confiding in me and I told her something like, "I have a wild guess about something you might have your doctor check for, but I'll shut up if you aren't looking for advice." She did want to hear and I did tell her. But I didn't just go to her Wall (or it would have been her LJ back in those days) and go "Friend! I know exactly what you have! Those doctors are stupid!"

[Golden Phoenix]

I posted

"Just got back from the doctors. After a battery of tests i have been diagnosed with [Condition x] Now i can finally get to work on getting better"

Response: ""Do you think the doctor is jumping to conclusions? Seems like there is a posh diagnosis for everything your grannie would have called the norm back in the day..."

[Yvaine]

I posted

"Just got back from the doctors. After a battery of tests i have been diagnosed with [Condition x] Now i can finally get to work on getting batter"

Response: ""Do you think the doctor is jumping to conclusions? Seems like there is a posh diagnosis for everything your grannie would have called the norm back in the day..."

Posh? Oh, she's quite the gem. Just what you needed, a classist jab to go along with the unsolicited advice.  I'd say tweak your permissions so she can't see anything anymore. Hello, Restricted List!

[bah12]

I posted

"Just got back from the doctors. After a battery of tests i have been diagnosed with [Condition x] Now i can finally get to work on getting better"

Response: ""Do you think the doctor is jumping to conclusions? Seems like there is a posh diagnosis for everything your grannie would have called the norm back in the day..."

I don't see how that can be construed as trying to comfort.  I still say you could have been kinder in your response, but honestly don't think you lost much when she decided to block you.

[Isisnin]

She was big time out of line in her response.  You clearly stated that you had had a "battery of tests" so your diagnosis is not in questions.  then you state that you "can get to work on getting better".  You are clearly happy to be on track and then she tries to derail you.

She owes you an apology.

 If she was in your life, she'd probably keep second disparaging your doctor.  That won't help you.   You are better off without her.

[Iris]

Could we please avoid derailing the thread with the posting stuff on facebook discussion, which, unfortunately has been done to death.

Actually, FB discussion isn't derailing the thread, it's part of why you had the problem to begin with.  As PP's mentioned, be careful who you post to on FB and you will be less likely to encounter this type of situation.

I'm not sure. If Golden Phoenix has her facebook limited to people who she expected to be interested in her health then I think she's done all she can. .

Oh sorry, I thought she posted on FB for her whole list to see. I didn't realize that she only posted to a handful of people who might be interested.

My point was that for many people  "a handful of people who might be interested" IS their whole list. The OP mentioned that her list is very restricted. Posting something on your facebook wall can run the whole gamut from "told my bff" to "took out a full page ad in the local paper". Since the OP sounds like she is much closer to the bff end of that scale I think facebook becomes irrelevant.

I posted

"Just got back from the doctors. After a battery of tests i have been diagnosed with [Condition x] Now i can finally get to work on getting better"

Response: ""Do you think the doctor is jumping to conclusions? Seems like there is a posh diagnosis for everything your grannie would have called the norm back in the day..."

That doesn't sound very comforting to me. I still wonder why you want to make things right. Also, since you have said you keep your fb list down to the interested and supportive, I would say she's definitely ruled herself out of *that* group.

[fluffy]

With the update, I'd say that friend's post was indeed quite the peace of work.

She's done the hard work of de-friending you. I think you can let her slink off into the sunset with a clear conscience.

[Eeep!]

I posted

"Just got back from the doctors. After a battery of tests i have been diagnosed with [Condition x] Now i can finally get to work on getting better"

Response: ""Do you think the doctor is jumping to conclusions? Seems like there is a posh diagnosis for everything your grannie would have called the norm back in the day..."

In light of this, I really don't see how there is any other way to read it than as dismissive. And then when she correlates it with the theory that kids with ADHD actually don't have anything truly wrong with them but are, in fact, "naughty", it really does seem to infer that, not only is the OP's diagnosis possibly wrong, her condition is likely based on some sort of wrongdoing on the part of the OP. Nice.

[Golden Phoenix]

I've decided to come clean.

The condition I was diagnosed with is Compulsive Overeating. Some people doubt it exists but the result for me is that i am hugely overweight. Her response came across to me as "The doctor's making it up you're just fat and too lazy to fix it"

With treatment i've already lost 10% of my bodyweight.

The condition she was once diagnosed with but fought against is anorexia, she was actually underweight because she suffered from nausea.

[Yvaine]

I've decided to come clean.

The condition I was diagnosed with is Compulsive Overeating. Some people doubt it exists but the result for me is that i am hugely overweight. Her response came across to me as "The doctor's making it up you're just fat and too lazy to fix it"

With treatment i've already lost 10% of my bodyweight.

The condition she was once diagnosed with but fought against is anorexia, she was actually underweight because she suffered from nausea.

She's out of line. She's extrapolating her own experience to everyone else's and bring a boor in the process. Misdiagnoses happen, but it doesn't follow that all diagnoses are wrong, especially if you've started treatment and it's working!