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

[Golden Phoenix]

Ok, i'm going to do my best to explain this while being vague but it's a funny issue that i really don't want derailed. So here goes.

Just an fyi. This occurred on facebook but is regarding the conversation not the etiquette of how facebook is used (although i'll admit some annoyance at it turning up on my wall) and as an fyi the list of people who will have seen this consists entirely of my family and closest friends. Please let's avoid the "Posting personal stuff on facebook" discussion.

B.g: Right. I have suffered with Symptom A for many many years. There are a couple of causes of symptom A but the primary one is self-inflicted and the result is often that the person is seen as bringing it on themselves. I have been struggling with managing it for myself for a long time. Those who are self inflicted usually try to insist that it isn't, which doesn't help.

I went to the doctors in our new area and after listening, testing and so on i was given Controversial Diagnosis X. I was then referred to Specialist X and put on Treatment X. (Which is working beautifully)

My facebook consists of some very close friends and my family. None of us live nearby any more and therefore we use facebook to keep up to date on the minutae we'd usually gossip about over coffee. Naturally I updated my status to advise people about my diagnosis.


The issue: A friend who i haven't spoken to in a long time replied to my post saying (paraphrased)

Do bear in mind that these days people are diagnosed with stuff all the time that years ago would have just been "normal" and there's nothing wrong with them. Doctors tend to jump the gun with this kind of thing. (She then made an adhd/naughty kids comparison but that's a whole 'nother rant, please don't derail with that, thank you)

I saw red. I walked away from the computer. Had a snack and a drink and then came back and deleted her post and replied via private message.

this is what i wrote:

Hello.
I've just deleted the message you wrote on my status.
I'm sure you didn't mean it this way but what you wrote came across as very offensive.
The doctor hasn't just randomly given me some label, i was questionned, assessed, had blood samples taken and tried on various treatments before they reached this conclusion.
Your comment implied instead that the doctor had just gone with that because it was easy and really this label is something that in time gone by would have been "the norm", Thanks very much for the implication that actually there's nothing wrong with me, I [just have symptom a] and am too lazy or stupid to fix it.
This diagnosis has been 3 years and a lot of hard work, frustration, psychological analysis and tears in the making. No-one "jumped the gun" i am just glad that the medical professionals have listened and offered as much support as they can, i was hoping my friends would do the same.

The italicised was a huge mistake. I know this, and i regretted it as soon as i hit send, apparently i didn't wait long enough before replying, but i couldn't call it back.


Her response came as follows:

Well after [being told i probably have condition a and finally getting tested after i kicked up a fuss]  yes i think i was actually knowledgable about having being labelled as something. I had hoped that having hung out before i would have proved myself as someone who was not nasty but obviously not. If my words came across that way i would have apologised but after the message you sent all i feel is a bit hurt to be honest. Bye

The problem here is her misdiagnosed condition is something that does not cause people to look down on you, and she has been arguing for re-assessment. Struggling against this notion that i'm too stupid and lazy to fix myself has been half my battle and her response to me finally getting the help i need is "Yeah, well the doctors probably labelled you that because it's easy" that hurt. a  lot, she directly implied that the cause of my problem was me, not the medical condition i now know i have.

I don't blame her for feeling hurt at all. What i wrote came off really nasty and i really do regret that and will serve my time in E-Hell knowing i deserve it.

My question really is as follows: If someone is diagnosed with a rare condition, is it acceptable to basically say "You probably don't have that, it's probably just that you are [whatever] and the doctor has got it wrong due to [laziness/ineptness/simple mistake/to shut you up/aliens/insert reason here]?

And what can i do to make this right? She blocked me, i have no way of contacting her now, she even blocked my husband even though he wasn't involved.

[jedikaiti]

My question really is as follows: If someone is diagnosed with a rare condition, is it acceptable to basically say "You probably don't have that, it's probably just that you are [whatever] and the doctor has got it wrong due to [laziness/ineptness/simple mistake/to shut you up/aliens/insert reason here]?

And what can i do to make this right? She blocked me, i have no way of contacting her now, she even blocked my husband even though he wasn't involved.

1) No, it's not acceptable. Not in any way, shape, or form, unless they are an appropriate medical professional with intimate knowledge of your symptoms & history (i.e., your doctor!). So she was WAY THE EHELL OUT OF LINE. She may know something about being misdiagnosed in general, but NOTHING about your specific case.

2) You don't need to make it right, she does. Until then, unfriend and be glad you're rid of her.

[Roe]

Let it go.  TBH, you are well rid of her.  Your email to her was pretty dramatic but still, her response on your FB was uncalled for.

[bah12]

She was insensitive.  It is not polite to basically refute a medical diagnosis in an open forum (or at all).  You were given a diagnosis, she is not better qualified to come up with something different.  I'm assuming she is not a doctor, and she did not examine you.  Now, had you posted being upset that "something was wrong with you", I can see sending you a PM and stating something like "50 years ago there would have been no 'label' to your condition.  You're perfectly normal despite your diagnosis."  But that is not what you asked for and that is not what she did.  She was rude.

Yes, your PM to her was harsh.  You were hurt.  Perhaps you could have waited a little longer to fully calm down and then explain your hurt, but your feelings are legitimate.  This is how she made you feel and you were not wrong for deleting her post or explaining to her why.

As far as making it right...why do you want to?  This is someone who you haven't spoken to in a while and who blocked you on what seems like a trivial thing.  If she's that insensitive to you and then so sensitive to her own feelings that she'd block you and your husband that quickly, does she add any value to your life?  You have no way of contacting her, so I would just let it (and her) go. 

[Cat-Fu]

I'd just let it (and her) go. It sounds like she's taking out her frustrations about her own diagnosis on you, and that's not fair or polite.

[buvezdevin]

I am confused as to whether there is overlap in you and your friend's symptoms or conditions, though clear that there is a distinction in your diagnoses.  If you have a shared symptom, let's say being purple, then your email back to her would read like "hey, there is a reason I am purple, and it has been fully tested and verified.  You implied it is my fault I am purple, and it isn't - though it is certainly due to laziness that many people are purple."  So, if she is also purple, whether or not you were aware of her being purple, I can see where that would hurt her.

In that case, her post was a bit thoughtless, but she may have been trying to assure you that many people are purple, and being purple doesn't mean anything is wrong, other than different coloration.  Your reply back explaining that there is a reason for your purpleness which is being treated could have been kinder.

If there is no overlap in your conditions, you are purple, she was thought to be orange at some point - her post and follow up email were - at best - inconsiderate.  And it was over the top to say that her having been briefly labelled with an incorrect diagnosis which was corrected as soon as tested makes no sense, nor make her an authority in responding to your email laying out the extensive testing and diagnostic process you have already gone through.

[Golden Phoenix]

The closest our symptoms come to overlaping is....let's say my condition causes shrunken ears and hers causes saggy ears. It affects the same part of the body and how it looks, but the causes, treatment and perception are 100% different. They are in fact almost entirely polar opposites.

[snowdragon]

It would not matter to me if they were exactly the same.  If she is not your medical professional, she needs to keep her opinion to herself. anything else is rude and invasive.  I agree with the person who said you don't need to make this right, she does.

[pearls n purls]

In the future, I'd changing your settings for medical posts so just your sister/other family could see them.

I'm very non-confrontational, but if someone posts something I don't like, I just delete and ignore it.  She's not your doctor and you don't owe her an explanation of your symptoms/condition/treatment, so I'd just drop the whole thing.

[FoxPaws]

In answer to your first question, it's not acceptable to make unsolicited assessments of ANY diagnosis, be it a rare, controversial condition or the common cold. Friend was out of line to do this and should have simply not commented at all if she couldn't think of anything supportive to say.

As to the second question, it sounds like all parties involved need to give each other some space for awhile. This situation came about because both of you were too quick to respond to something. Give it a few months and then extend an olive branch if you still feel the need.

Best wishes to you for the continued improvement of your health.

[Iris]

To answer your questions

1) No. That is never okay.

2) Leave it a while and then ask yourself "Do I even want to make this right?" You haven't spoken to her for ages, she is egregiously rude to you and then has a major hissy fit when you send her a harsh but not totally out of line message, blocking not just you but your husband also.

[JenJay]

Let it go.  TBH, you are well rid of her.  Your email to her was pretty dramatic but still, her response on your FB was uncalled for.

I agree. I could see trying to work it out if she had said "I'm sorry that my reply hurt and offended you, that wasn't my intent. I've been misdiagnosed myself so I guess I'm always on the lookout for it. To be honest, I'm hurt that you took my post as negatively as you did." Instead she got sarcastic, ended it with "Bye!" and blocked you. I think she's just piling drama on top of drama and you don't need that.

[bansidhe]

My question really is as follows: If someone is diagnosed with a rare condition, is it acceptable to basically say "You probably don't have that, it's probably just that you are [whatever] and the doctor has got it wrong due to [laziness/ineptness/simple mistake/to shut you up/aliens/insert reason here]?

And what can i do to make this right? She blocked me, i have no way of contacting her now, she even blocked my husband even though he wasn't involved.

No, it wasn't right of her to make the comment she did, however, I have found out myself that posting medical details on Facebook is an open invitation for people to comment on those details. It might not be right or etiquette-approved, but it's reality. In my case, I've been dealing with a chronic condition for over a year now and trying to find a diagnosis (we've got a top suspect now - woo hoo!). Early on I had to make a choice: post details now and then and put up with a few unwelcome comments and absolutely absurd advice, or restrict my updates to just a few people whom I really want to be in the know.

I chose the former course of action and just ignore the "out there" comments. You might find the latter course of action works better for you, as your condition has more troublesome aspects about it than mine does as far as people's perception is concerned.

I would have read your friend's comment as an attempt to be encouraging, actually, although it was certainly awkward.

If you really want to make things right, is there a friend of a friend who can get a message to her? Or can you look up a mailing address? If so, write a letter explaining that you overreacted to her comment and misconstrued what she was trying to say. Apologize sincerely, but explain that you often feel that people judge you because of your condition and thus are sensitive to implications that it's your fault or that nothing is really wrong.

[Sharnita]

"Yeah, I do think that for a lot of people posting medical info is seen as an invitation to iffer commentary, advice, personal stories, etc.

[Golden Phoenix]

While i agree with the Posting stuff on facebook is an invite to comments thing i have it pretty much locked down to family and friends who would actually want to know this sort of thing. I'd been getting messages of support and ones asking if i'd heard back from the doctor for weeks before my appointment and therefore it was the easiest and best way of getting the message out.

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

In this case she was only on my friends list because i was hoping to rekindle our friendship at some point. She was once a really close friend but we had drifted apart other than occasional facebook messages after she moved.