WTF?

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My 22 year old daughter has been diagnosed with pulmonary hypertension. My analytical nature being what it is, I now know too much and there are no good outcomes. It is progressive, incurable and ultimately fatal.

I hope the doctors are wrong because otherwise this social cripple has to figure out how to tell my wife that we get to watch my daughter slowly die of heart failure.

WTF? I can't do this. I can't give emotional support. I'm a f*****g automaton. Hug a cactus. Kiss a rock. Either would be better.

I'm sorry. I hope you all can beat this

I'm sorry to hear this. Hopefully she can get a succesful treatment for this.

You can support your wife and daughter by doing what you do best which is research. See if you can come to some of your daughter's appointments and hear what her doctors have to say. You may not be a hug-machine, but your wife and daughter will feel your love and concern in the medical research you do on her behalf.

The first round of reseacrh always looks bad. The bad stuff leaps out at you. Keep finding out more about her specific case and her specific treatment and things may start to look less bleak.

I hope for her healing. It does happen. Your medical research is your expression of love.

And also, as Chronos says, hold her hand. Hold both their hands.

I have been betrayed by my obsessive rationalism. The statistics don't lie. The websites for this condition bury the morbidity and mortality information but it's there if you look hard. I suck at lying. My wife is going to ask me if everything will work out. It won't. Best case is a heart and lung transplant. 3 year survival rate is 50% without that if it is secondary PH, less if it is primary idiopathic PH. The facts keep grinding away in my head. Any survival over 10 years is an outlier. Treatment focuses on quality of life - code for slowly. And she has already declined in just the last year - a noticeable change in her physical capacity.

If anyone tells you autistics have no feelings they are liars. I'm crushed. My wife is going to be devastated.

God I hope the doctors are wrong.

I know how you feel. I can't feel guinuine sympathy or empathy for other people either. I can fake it, but it isn't real.

Of course we have emotions. I feel for you, your daughter and your wife. Pulmonary hypertension is a very serious condition, as you know.

The problem is you cannot simply rely on abstract facts and statistics. There's nothing in that data that will divine your daughter's fate. There is a chance your daughter may die, and yes, the chances are considerable. But there's a chance she may live, or at least, live longer than expected. You have to accept all these as rationally possible outcomes and accept there's nothing you can do to determine one or the other. You can only be present in the here and now and help your daughter through this, one day at a time.

This actually isn't something only someone the spectrum would do. A lot of people do this when faced with mortality are like this. They feel powerless, and they want answers. They pour over the information and data that they have, hoping to see the future. But reality isn't like that. The future is not predetermined. You cannot know what will happen and you must accept that. You are powerless over the future. But you are not powerless over today. Good thing then, that today is all that matters. So focus on that.

You may have more time with your daughter that you think. You may not. Either way, do not squander today by hyperfocusing on data and statistics and wondering if they will predict your daughter's fate. Focus on today and on your daughter, what can help her now, and what will make her happy now. Quality of life IS what you should focus on, because this may in fact be all the life she has left and I am sure, no doubt, you want that to be best it can be for her. Don't worry about whether you can show your feelings. Just live in the present and be present for your daughter.

I hope the best for you and your family, whatever the future might bring.

Rationalism and attention to numbers can be extremely hard in this kind of situation; I have a hard time believing in miracles and have a hard time looking beyond statistics. My stepmother was diagnosed with congestive heartfailure at age 52 and was given five years to live. About the same time she was diagnosed with breast cancer. I was 37 at the time. Every year that passed the five I was delightfully surprised she was still alive.

Now, fourteen years later at age 66, she has more energy than I do. Treatments for congestive heartfailure improved during those first five years and continued to improve. Statistics are averages; I can't let them go and I doubt you will be able to either; my stepmother was able to let them go, hopefully, eventually your daughter and wife will be able to also.

I'm not sure I believe in miracles, but I do believe in the will to live.

My stepmother, is emotional and always full of hope; I would trade it for my attention to detail and cold, analytic nature, if I could.

I lost a child, and understand how difficult it can be to process these kind of emotions, but I can't really imagine what you are going through. I thought I might share that story; your situation reminded me of it.

Best of hope to you.

Thanks to all that have responded.

Strange things happen and I can't predict the future.

My wife doesn't know the seriousness yet. I don't know how long I can keep it from her or if I even should. I suppose my daughter should tell her not me. But my daughter can be very stubborn and may try to pretend nothing is wrong for as long as she can. She may even go into full denial for awhile. I suppose that would be normal.

I'm really going to have trouble not shutting down and withdrawing. Way to much to process.

It's no wonder you're devastated at this news. I think it's very admirable that you are so concerned with how you can support your family emotionally at this time.
An important thing to keep in mind is that they love you, too. Logically, they must be used to you and your ways at least a little by now. Just concentrate on being THERE for them, and you'll be fine.

Another thing: after my diagnosis of autism, my family started looking at my impassive-seeming nature in a different light. My younger sister in particular used to resent me really badly, because I never seemed to get upset, or be moved emotionally by bad things that happen in life. After she learned more about autism, we talked about it, and now she knows that I feel just as upset as she does, or at least that I CARE.
And now, I'm her number-one person to go to in a crisis, because I'm immune to emotional contagion. Because I SEEM calm and analytical, it helps her become less reactive, instead of two people in a feedback loop of becoming more and more upset, sad, or angry. I also validate her feelings, because when something bad happens to you, it's logical to feel bad about it. I tend to concentrate more on what, if anything, can be done about the problem, and that includes accepting things you can't do anything about.

I think you have a lot to offer your family at this time. Do your best not to withdraw, and try to spend time with them. Reaching out, even just to hold their hands, will show how you feel. Not telling your wife is going to be difficult for the nonce, but if your daughter has asked for some time before she tells your wife about it, you need to respect it for a reasonable amount of time, but it shouldn't be longer than until there is a clearer diagnostic picture of your daughter's specific situation. Statistics are helpful, but they are in no way omniscient! It's hard to come to terms with something you have no control over, but you need to find a way to accept it.

All in all, all anyone can do is the best they can.

3 years is not a hard-and-fast limit; research in this area is progressing quickly and the median survival rate is increasing. That doesn't make it easier, but I just wanted to make sure you knew that the number your doctor's telling you is the statistic established in the past, not the one likely to be observed in the near future with the better modern medical treatment we have now.

No, you shouldn't keep it from your wife, but let your daughter make the decision on when to tell... it's her body, her diagnosis, and she's the one to make that decision. You could tell your wife together; maybe that will make it easier on your daughter too.

I have found that a lot of people being told hard news will benefit from your not saying much and just kind of sitting with them. If you don't know what to say you can be honest about that and just explain you don't know what to say and you wish you could make it better somehow. Also, asking if there is anything you can do for them is helpful. This is a standard thing to say, though, so if you really do want to do something you could offer to do a chore or whatever to help them out.

I just hope you get through this okay. I'd be going "WTF" too.

Best wishes.