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:
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.