Frustrations of having a Rare Memory Disorder

I cannot express how fortunate I am to have discovered your channel. Knowing someone else experiences life like I do is so reassuring. I really connected with you on your video, especially when you shared about your friend and her cancer. I recently received a Facebook message from someone who served as my resident advisor in college (I'm now 48). Despite the fact that I don't recall anything about her, I knew I knew her. Before replying to her I looked at the history of our last "message" conversation. I was SHOCKED to discover that her husband had died in a car accident! She had shared the details in the message but it was as if it was the first time I learned about it. It is these occasions when I become the most frustrated with my condition, because not recalling something as significant as that would imply that I don't find it important or worth remembering. The very last thing I would want anyone to think.

I hate that people do not understand that I just can’t remember things, feelings, emotions. I have tried to explain my condition to some (very close) people. I have sent them videos which discuss SDAM. Thank you for sharing.

great explanation its frustrating for us with sdam there is also the side of it that makes us sad and feel alone alot at least for me because people talk about things ive done and i dont remember them my kids being born stuff like that my wedding and people sayig i just dont remember because i dont think about it but i dont think about it because i dont remember it ..i dont have a choice its not my fault ....its upsetting

I can actually see the difference in your videos from before, and this one, where you have Kitty to keep you calm. I am glad that you figured that out, and that you have your Kitty.😊😊😊

I am an aphant with SDAM, too. The way you describe it is the way I live it. I knew I was different, but had no idea my perception was so different from the way the rest of the world perceives reality. I found out when I was 60! I use computers to prop up my memory, thank God for computers and the internet! I'm a paralegal so you can imagine the detailed notes and lists I keep! I maintain the belief that all the info is there, in our brains, it's just that our retrieval system is borked!

You've explained SDAM and aphantasia really well. Just like I experience it too👍

I relate so deeply to everything you’ve said here, and I’m grateful to have learned about this. I feel so validated right now it’s crazy. I’ve been so hard on myself for my memory for so long, I feel like a weight has been taken off my mind now that I can put it into words better. Thank you so much 💕

You’re right. It goes right out of your head if you don’t do something with it.

Oh I have a photographic memory. It’s insane lol. I can’t learn things easily and have to write things down repeatedly BUT can remember conversations verbatim 🤷‍♀️

I don't understand why it's soooooo much trouble for most people to just repeat themselves

Went out with a good friend tonight for dinner, and back home. Already all i can tell you is i know we went out maybe barely a clip or three of a single still frame of memory. I know we had a good time but that felling is already gone. Might have well just stayed home wouldn't have been any different.

That memory disorder is rare? Well I am glad you came on line to talk about it. Since I have lived with it 80 years now, you have explained the things I never dreamed normal memory has, and mine doesn't do. I think I remember better than you but it still is a very vague memory. If reminded I may remember something I was told 20 or more minutes ago might keep it then, might not.

Yeah I only recently realized I had forgotten almost my entire childhood, I am only 20 years old. I remember some things and that we moved a lot, but I dont remember what order these various things happened in and I cant put myself in them. It is weird because people will recognize me from highschool and I just dont remember them and it makes me feel like a jerk.

Gosh that sounds so difficult. Glad you have a way of reminding yourself.

I also need to see other peoples experiences with these difabilities (I truely think everything is doubled edged, two sides of the same coin, toss away the dis it’s just different, we are all same same but different and not less than) however I’m finding a lot is relatable, like it’s not felt but rather intellectualised? I’m curious as too the hypothesis of personal stress at time of event affecting the formation of memories. It’s a long stretch as we can’t remember, would be possible to notice the stressors via journaling and reflection however that’s a big effort not for everyone at this point in their life. I myself have noticed in the moment that it is harder to connect with my true feelings under the mask when stressed and overwhelmed but still NT passing, to my knowledge haha. I really want to connect and be with people however it feels like low panic and the process of identifying what I’m feeling, what I’m needing/wanting, how to achieve that in line with my values on the spot is sweet panic. 1. I’m wondering if this prolonged state could affect how we form and recall memories, for each person and 2. Could the factors that affect how people form memories show a relationship with people who have specific memory diagnosis’s detail of recall. As well as other relationships that crop up and how they could shed light. I’m autistic adult, with undiagnosed or misunderstood other diagnoses (every professional seems to have a new opinion) resulting in weird memory things. I do also have an agree with my diagnosis of Cptsd

That it time line, I will remember something but not when they about. What year did that happen in??

Haven’t watched yet, straight up please please please can I know where did you get that gorgeous dragon. Reptile brain do want. Dragons are a life long special interest, you can long pat stim 😍 and I’m at desperately hoping/craving that they come weighted

Does watching video recordings of things you have done and places you have been help your memories, at all, or are they just images or someone else's life? Does watching the same video, during several successive days or weeks allow you to start to anticipate what you will be seeing in that video?

May I ask where you got the plushie that you're petting in this video? My plushies are too small to pet so I got a fluffy blanket but it's not meeting my sensory stims needs.

I have a tip that could help you maybe you could make note of more things in your life but idk if that'd help because that might just be overwhelming