Have you ever had a long term partner who received a diagnosis and then completely changed? Have they become so obsessed with their condition that they seem to forget you exist at all? Is there light at the end of the tunnel? -
(This is pretty long, thanks very much to anybody who takes the time to read this.)
My partner and I have been together five years. This year he was diagnosed with Adult Aspergers, almost by accident. What happened was, he said something one day about the way he experiences life and I said, "Haha, that sounds like you've got Aspergers!"
He said, "No I don't", but something twigged in my brain. I realised I'd never read the symptoms in the DSM IV. So I did, and suddenly several of my partner's quirks and habits became clear.
Sure enough, he got diagnosed. I was happy for him. It must be awesome to go 30-odd years feeling different to other people and then finally realise there's a reason for it.
Before the diagnosis, everything was fine. SINCE the diagnosis, everything has changed. He has become obsessed. All he does is read books about Aspergers or log on to his Aspie web community. He only wants to talk to me about Aspergers.
And now, everything in his life is about Aspergers. Every action, every thought, everything in his life, is now new--because it is seen through an Aspergers filter now.
The way we relate to each other has changed so much that I am in shock. I honestly don't know what to think.
The reason I became best friends with him and eventually fell in love with him is because he was such a caring person. I've had mental health problems in the past too, primarily before I knew him, but my partner has always been a shoulder to cry on; he would never turn me away if I was sad.
But since being diagnosed, if I get sad, he says, "I don't understand this."
He says he's got Aspergers and people with Aspergers don't feel empathy like normal people.
But then why did I feel like he was the most empathic person in the world before... for five whole years? Was it a lie?
It honestly seems like he is reading all this material on his condition and "programming" himself like a robot. As though he has some subconscious need to be the most extreme Aspie. It is very disturbing behaviour and most unlike him.
Examples of the way he treated me before:
--Committed to our relationship and our future, and working hard so we could start a family.
--If I needed to talk, he would listen. Even though sometimes he would vague out, he would at least attempt to pretend he was listening :)
--If I cried, he would hug me.
--Talked a lot, and very openly.
Background: for the past 3 years at least, I have been his pillar of strength. I have been a practical, responsible person, studying hard and working to make a future for us. He has been working hard too, but I have at times felt as though I am carrying the "mental" burden of being positive and having a good attitude all the time. (Whereas he tends to get a bit sooky and pessimistic, at which point he comes to me for comfort.)
That was okay by me though. I felt like being the "strong one" earned me a shoulder to cry on, on the rare occasions I did feel sad.
It worked that way for years. I knew I could rely on him, which made it much easier to never get sad in the first place.
But now, he:
--Literally ignores me when I try to talk to him about something. It's almost painted across his face: "I don't have to even bother responding or making a facial expression. I have Aspergers."
--Goes to sleep if I cry.
--Refuses to acknowledge he used to be any different to the way he is now.
I feel like I'm going crazy .. how could I have imagined 5 years of caring behaviour?
Now, no matter what I say to him, he has an excuse (Aspergers-related) for why he can't understand / take the time to listen / care. He likes to list symptoms. It is as though my feelings no longer count, because if it's not Aspergers, it's not real pain.
He seems confused about why I am upset. I asked him directly, tonight: "Do you realise you are acting like you have always been this way? It's like you forget what you were like before the diagnosis." His response: "I don't remember."
There are only two explanations I can think of for all this.
(1.) He could be just going through this overwhelming reflective stage, which, coupled with his inbuilt Aspergers obsessive nature has made him completely self absorbed and utterly convinced that he is more severely autistic than he actually is.
(2.) He is experiencing some subtle personality changes following the diagnosis, but they seem more extreme because he has just happened to also suddenly lose feelings for me at the same time.
For the past few months, we've only managed to get along for short periods of time, a few days in a row maximum. During those more lighthearted times, he will tell me he does love me and everything seems like it might get better.
But then it gets destroyed suddenly, when he decides to start acting socially retarded towards me, for no reason. He gets this blank expression on his face and can't extend the simple courtesy of a response or a smile. (Yet the cat will come in and he will manage a smile.)
In essence, he doesn't seem to acknowledge there is a problem with the relationship. He seems to have a major lack in insight which stuns me because he has always been pretty analytical and self aware.
It's like I can't get through to him anymore. We always communicated so freely. He would never ignore me! Now it happens almost every day. He claims he loves me, but that I just don't understand what it's like to have Aspergers.
But how can somebody get so good at coping with it over 30 years and then suddenly decide "well that was too much work, may as well give up now that I have an excuse!"?
Sometimes I can't help but feel like he's faking it somehow... or milking it. As a teenager, I was diagnosed with depression and an eating disorder and I did get more symptomatic and more self absorbed, almost on purpose. So I understand becoming a bit obsessed with a diagnosis, but I thought that was sort of an normal adolescent self-discovery thing that you get over. My partner is in his thirties.
Extra, perhaps relevant piece of info: Over the years I have teased him about being mildly hypochondriac-- since being diagnosed, he's been way worse. He is convinced he has allergies and has gone on an extreme diet because "it's worth a try to see if he can improve the Aspergers." First he cut out dairy, then he cut out gluten. Tonight he mentioned eating less meat but I told him that was going way overboard and he agreed! Could lack of nutrition be causing/adding to this personality change?
We are going to therapy next week, but I don't know how useful it will be because he is only doing it for me -- he doesn't actually seem to want to actively work on our relationship, he seems too consumed with his own health problems.
Sorry sorry sorry for the length; I know it's probably confused you all - I could go on, but the main question is: Is this type of reaction to a diagnosis common? Does anyone have any experience at all? What's the prognosis? Am I doomed?
Stories about any crazy behaviour following the diagnosis of any condition or illness are be very welcome!
I hope I have accurately conveyed how surprising this is for me. Yes, before the diagnosis he was a bit socially retarded at times, but in a mostly endearing way. You would never have thought there was anything wrong with him beyond a slight tendency towards depression that most introverts or nerds have to some degree. He is/was funny and loyal and caring and nice.
Email me on postdiagnosisshock@gmail.com if you need to.
posted by anonymous to human relations (28 comments total)
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posted by headnsouth at 8:19 AM on December 9, 2008 [1 favorite]