Introducing Myself - And Question about Guilt Over Delayed Diagnosis

[ReginaS]

Have been thinking about regrets: When it's something like a diagnosis and I have strong regrets - I might be trying to open a back door out of feeling so very helplessness towards the present situation - i.e. that I really cannot change it but deep in my heart I would love to do exactly that. Even though reality is what it is: by telling myself that 'had I done something different....' it's not hitting me quite as hard and w. my guilt feelings I can blame myself rather than be totally powerless over not being able to change a truly unfortunate situation. Sometimes it takes time to come around and accept what is.

My partner knew in one way or another that something serious was hanging over his head and needed time to get used to it. When he was ready he scheduled some appointments. I really believe that it's loving to give people space, let people make their own decisions in their own time, let them work with the circumstances they are in and not step in and change their world because I think it would be better that way. Who knows... striving for balance.

 

[affected]

what Regina said ...

 

[Allie1987]

To M: That’s an interesting take - I may tell him about the feelings if they don’t pass soon. Of the two of us I am the worrier and he is the more accepting, easy go lucky one, so he would probably say: “You think too much!” (Something he has accused me of many times.)

To Regina: I think you nailed it. My PALS may well have been making a choice on some level about delaying. And, it had already occurred to me that my regrets/guilt might be a form of the “Bargaining” that Kubler-Ross talks about in the 5 stages of grief. Like, “please God, let me go back and do this over, and I promise this time I will make sure he goes to a neurologist asap, pay whatever is necessary out of my own savings, etc - if you’ll only let him live longer and be more functional longer…” Obviously it’s not rational, but grief isn’t.

To Tillie: Thanks so much for the link - somehow I had missed that! (Guess I am in a fog!) I’m only partly through it and it’s already super helpful.

I’d like to commend all the moderators and everyone who has worked on this forum for doing an exceptional job with it. It’s so thorough, organized, and professional, while also being very human and compassionate. So glad I found you!

 

[MJT]

Allie, we will be here with you. If you can't let go of the guilt for yourself, maybe can do it for your PALS. 🧡 (But I hope you can do it for yourself.)
Regina, I feel privileged to have read your beautiful post this morning.

 

[Nuts]

Allie, I can look back and see symptoms two to three years before Matt was diagnosed. Among the things that I"m thankful for is that we did not know any sooner than we did. Frankly, that knowledge would not have changed a thing except to rob us of the last "normal" years we had. If this was a disease that you could cure with early intervention, I would have added guilt over not knowing earlier to the load we all carry for one reason or another. It isn't and I didn't. I hope you can let that guilt go--you will have enough to carry without that.

 

[affected]

{{{{{Nuts!}}}}}}
I agree too, I'm glad we ignored early symptoms as everything changed in a blink once diagnosed. I cherish the time we had before doctor visits started.