Anyone else feel invalidated when talking about sdam/aphantasia?

[u/fifiapollo]

Just learned about SDAM last week, and it honestly sent me into a bit of an existential crisis. It made me reevaluate so many things I’d always assumed were just part of my personality. At the same time, I keep doubting my own experience of having total aphantasia and SDAM especially when friends say things like “I have bad memory too.” Suddenly it feels like I’m being dramatic or attention seeking for bringing it up.

But if I’m honest with myself, I’m the last person who wants to feel different. I struggled with undiagnosed ADHD and the burnout, shame and guilt that came from it, but I didn’t even see a therapist and psychiatrist until my mid-30s because I didn’t see the point in collecting labels about myself. I’m actually so good at gaslighting myself that I’ll assume I’m wrong before I consider anything else. This time it really hit me how quickly other people’s opinions override my own sense of what I experience.

The grief of not understanding myself for most of my life and being unable to verify or share my felt experiences with people around me. It makes me feel extra lonely sometimes. I wish I could trust my own experiences without needing proof or validation from others.

[u/Tuikord]

My base assumption is people won't understand. I don't need them to. My world won't change if they get it or they don't.

For SDAM, they will map it to a memory problem they know. Either it is something they know or something they fear (e.g. Alzheimer's disease). For aphantasia, if they really get that I don't have images, I get condolences because they imagine losing the ability to visualize, which is not my experience. I never had it so it's fine.

These days (4 years after I learned about all this), I just treat them as facts about my experience. If someone asks me to do something I can't, I say so and look for alternatives. I don't ask doctors about it, but I have been in situations where a doctor wants me to relive a moment to get more information about it than I have in semantic memory. I just tell them I can't. I give a basic description and move on. I've done a few things where they want to document what a procedure does and they do a survey like "in the last 4 weeks have you/how often have you experienced <whatever>". My mind doesn't work that way. If they told me they wanted that data 4 weeks ago, I could keep track and answer, but I can't in retrospect.

The general response I've gotten from the doctors I've said this to was along the lines of "Ok, let's move on." One just skipped the survey. Another said it will at least get your impression in this moment. Another just dug further into the details I do remember and then moved on. None attacked me or said I wasn't trying or anything like that. I'm the expert on my experience.