How do you get over feeling hopless after a diagnosis?

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TheOther
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05 Feb 2020, 3:33 pm

A few months ago, I went and got a Neuropsychiatric evaluation to confirm my long time suspicion that I am on the spectrum. They concluded that I likely am.

A lot of people seem to talk about this experience as being really positive. People feel like they finally have an explanation for all of their life’s strangeness, and they describe feeling relieved from the confusion.

The opposite has been true for me. I was depressed before, but I have been much more so since. While I feel like maybe I have a better explanation as to what’s going on, I just feel so much more hopeless about the situation. I used to feel like a goofball who just needed to figure some more things out about people to fit in better. Every small improvement I was able to make used to feel like validation that I would eventually turn out ok. Now that I have been diagnosed, I feel like instead I have just solidly confirmed my deepest, darkest fears: that I will always be this person who struggles painfully with so many things every day. I know nothing has changed in reality, but I feel like now I am painfully aware that there is a hard ceiling on my capabilities and capacity for improvement. I often wonder if I would be better off not knowing.

How is someone like us supposed to get over feeling so hopeless, when in many ways, there is no hope?



B19
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05 Feb 2020, 3:43 pm

For some there is a grieving process, which is an important transition toward acceptance. These are people who as you have done, interpret and experience diagnosis as a loss.

You may find that when the loss is processed, in time, the gains become apparent.

Grieving in this circumstance is "disenfranchised grief" - as the common or garden world of daily life ignores it, so your experience is alone and unvalidated and cut off. It's ok to feel all sorts of conflicting and negative feelings; just witness them as they come and go. There are real losses to grieve for, though not the same ones for everyone.

Maybe read up a bit about disenfranchised grief.



BTDT
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05 Feb 2020, 4:03 pm

A few months is not much time when it comes to processing something like this.



elbowgrease
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05 Feb 2020, 4:44 pm

I don't think there is a ceiling to our (or your) potential. only a different, and possibly greater set of challenges. A part of overcoming any obstacle is knowing what the obstacle actually is.
There's a person here with a signature that I absolutely love. Something like: "When you're fighting an invisible monster, throw a bucket of paint on it."



aquafelix
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06 Feb 2020, 7:43 am

I know their are a lot of stories of diagnosis being a positive experience, but not everyone's response is the same. I was diagnosed just under a year ago and had a long period of disbelief before I accepted it was most likely accurate.



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06 Feb 2020, 8:26 am

For me the hopelessness has come from the fact it took so long for a professional to see an assessment was needed .
Yes it confirms I was right all along , which is good in that I'm not a totally deluded idiot . Practicality wise though a dx at 62 ,along with a chronic history of SMI, is not going to result in significant improvements .

The only semi positive thing is that I'm a survivor when more than a few in the same kind of situation would have topped themselves .



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06 Feb 2020, 9:05 am

When I was diagnosed and the psychologist expected me to be happy about the diagnosis I was a bit puzzled. Before I was diagnosed I wasn't sure I had autism. It was one among several possibilities. What I knew for sure was that I had a social anxiety disorder that was more debilitating than any autism symptoms I might have. However, anxiety disorders are also more curable than autism. No medical doctor would expect a patient to react overjoyed if they told them that, among several possible illnesses, their symptoms are due to the one that can't be cured. They would not tell you 'Congratulations, your disease is not curable' and be surprised if you're not happy about the news.

It also took me more than a year after diagnosis to come to the conclusion that it is likely true and I'm actually autistic. It took a while because, instead of masking my autism symptoms as a child, I copied my older brother's symptoms which are more severe than mine, because during out childhood if I was myself and not who he wanted me to be he'd beat me up. This was not something the person doing the diagnosis had ask about or that I had told her and I assumed the difference between maladaptive learned behavior and something I was born with may be relevant. She also didn't ask about social anxiety or other possible causes of symptoms and therefore I didn't trust her to be able to distinguish if something was caused by autism or not.

Anyway, I don't know how to get over negative feeling caused by a diagnosis. They lessen and go away with time.
B19 is spot on.



SharonB
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06 Feb 2020, 9:11 am

The book A Very Late Diagnosis... addresses the crisis of identity alignment after diagnosis. The author had a reaction similar to yours. It is an easy read and could be helpful for you.

Support is often key and fortunately I have the community resources and financial means to secure support for myself. Wishing support is there for you!

Hang in there.



B19
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06 Feb 2020, 3:31 pm

firemonkey wrote:
For me the hopelessness has come from the fact it took so long for a professional to see an assessment was needed .
Yes it confirms I was right all along , which is good in that I'm not a totally deluded idiot . Practicality wise though a dx at 62 ,along with a chronic history of SMI, is not going to result in significant improvements .

The only semi positive thing is that I'm a survivor when more than a few in the same kind of situation would have topped themselves .


You are a survivor, and that is a tribute to you, an achievement of which I hope you are immensely proud. Only a very strong person could come through the stuff you have had to. You have my admiration FB.



firemonkey
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06 Feb 2020, 3:59 pm

Thanks B19 . Quite lot of it was the luck of surviving multiple suicide attempts in the early days of having a mental illness . There can be a thin line between surviving and not surviving . Many good people end up on the wrong side of the line .



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06 Feb 2020, 4:40 pm

It's not a line FireBlossom, more like razor wire around the soul.



Exuvian
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06 Feb 2020, 9:55 pm

TheOther wrote:
Every small improvement I was able to make used to feel like validation that I would eventually turn out ok. Now that I have been diagnosed, I feel like instead I have just solidly confirmed my deepest, darkest fears: that I will always be this person who struggles painfully with so many things every day. I know nothing has changed in reality, but I feel like now I am painfully aware that there is a hard ceiling on my capabilities and capacity for improvement. I often wonder if I would be better off not knowing.

How is someone like us supposed to get over feeling so hopeless, when in many ways, there is no hope?

Just remember that a piece of paper doesn't change who you are. You don't have to suddenly acknowledge an arbitrary ceiling that your previous motivation and own personal experience has already seen beyond. Also, it's best to compare yourself to yourself (not someone else's ideals). There's always someone who can do something better than any of us (autistic/allistic or whateveristic). Feel free to remind me of these words if/when I become a hypocrite later. I have plenty of work for myself. :coffee:



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07 Feb 2020, 12:20 am

TheOther wrote:
Now that I have been diagnosed, I feel like instead I have just solidly confirmed my deepest, darkest fears: that I will always be this person who struggles painfully with so many things every day. I know nothing has changed in reality, but I feel like now I am painfully aware that there is a hard ceiling on my capabilities and capacity for improvement. I often wonder if I would be better off not knowing.

How is someone like us supposed to get over feeling so hopeless, when in many ways, there is no hope?


Isn't it an advantage to know that the problem is with the people who can't except us. Whether you will disclose to them or not, I feel understanding my ASD improves my relation to others. I haven't had any conflict with non-accepting NTs lately, but I feel more able to respond to their taunts should it occur.


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08 Feb 2020, 12:01 pm

I know how you feel because I can get to thinking that way sometimes, but I don't think it's a very accurate way to see things. There is not a hard ceiling. Autism is a category made up by doctors, but you're still like everyone else in the sense that you can improve yourself to a degree that will always be unknown until the time of your death. My parents used to worry that they would have to support me for my whole life, but I've been supporting myself for over a decade now. And you just have to keep a sense of humor about yourself, and remember that NT people struggle with a ton of stuff too. After all I may not have a prestigious job, but I work alongside a lot of NT people who also don't have prestigious jobs. And I have a lot of NT friends who have chosen me as their friend over any number of other NT people. We're just people with our own struggles, like everyone else.


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TheOther
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14 Feb 2020, 2:34 pm

Thank you all for your kind responses.

It's just tough when you run into problems every day. I feel just unaware enough of my problems not to be able to get ahead of them proactively, but just aware enough of them to look back on every incident with horror. It kind of feels like hell.



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14 Feb 2020, 4:29 pm

TheOther wrote:
A few months ago, I went and got a Neuropsychiatric evaluation to confirm my long time suspicion that I am on the spectrum. They concluded that I likely am.

A lot of people seem to talk about this experience as being really positive. People feel like they finally have an explanation for all of their life’s strangeness, and they describe feeling relieved from the confusion.

The opposite has been true for me. I was depressed before, but I have been much more so since. While I feel like maybe I have a better explanation as to what’s going on, I just feel so much more hopeless about the situation. I used to feel like a goofball who just needed to figure some more things out about people to fit in better. Every small improvement I was able to make used to feel like validation that I would eventually turn out ok. Now that I have been diagnosed, I feel like instead I have just solidly confirmed my deepest, darkest fears: that I will always be this person who struggles painfully with so many things every day. I know nothing has changed in reality, but I feel like now I am painfully aware that there is a hard ceiling on my capabilities and capacity for improvement. I often wonder if I would be better off not knowing.

How is someone like us supposed to get over feeling so hopeless, when in many ways, there is no hope?


It took me over a year to get a bit better, but still wouldn't say I am 100% over the hopelesness phase. Prior to my diagnosis I was very similar to what you describe: I always thought it would be just a few more things to learn/master and I will be like 'everyone else'. After the diagnosis I lost all hope of ever truly becoming the person I wanted to be (someone who is comfortable, confident and comptetent in most social situations).
I think what helped me a lot is the realisation that this diagnosis does not put an end to my development as a human being: I can still learn things, I am still able to change my life in positive ways. In a sense, diagnosis can be empowering because (if it is the right diagnosis for you) it gives you a deeper understanding of yourself which is the basis of all self development and positive change. But it takes time.


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