My experience with CDS
I’ve suspected i have CDS for a little over 6 months now and I figured I’d share my experience. I do think some people on this thread have already articulated things quite well but I’ll just bring my experience here to you. For context, I am diagnosed with ADHD-PI, yet I’ve always felt the inattentive category of symptoms to be massively incomplete to my experience. Which I guess is what eventually led me here. I do suspect I have both tho so keep that in mind if this doesn’t completely resonate.
Hypoactivity
For the entirety of my life I have been mentally exhausted or drained. I always felt like I had no mental alertness, even though I couldn’t articulate it before. Thinking itself feels like a massive challenge and most of the time I don’t feel like I have the mental bandwidth to really do it at all. By thinking I mean goal oriented thought using words. Much of the time the kind of activity on my mind feels like ruminative, wordless, and undirected. I associate it with the mind wandering of the default mode network and what has been described as maladaptive daydreaming. Even while medicated on things like Adderall or Vyvanse, this kind of mental activity dominates my mind, although I do have a greater capacity for intentional thought to a degree I never imagined possible. That being said, it still feels very below what I perceive to be normal for a neurotypical person. When I was younger I used to see how thinking was depicted in a show and always thought it was so bad and inaccurate when the characters would talk to themselves. I would think (although not with words) something along the lines of “this is not accurate at all why would they even choose to depict thinking this way? it’s so unrealistic.” Over time I learned I was the odd one out on that. Intentional thought seems only possible for me while I’m medicated and if I try while unmedicated I get easily lost and it even gets drowned out by the type of daydreaming I mentioned before. And I don’t notice that happening, although I certainly can sometimes. However noticing it doesn’t mean I can necessarily stop it from happening. Interrupting the default mode network thoughts is possible for me but almost immediately a new one starts. And those kinds of thoughts can link back and interconnect in messy and incomprehensible ways. It feels almost hypnagogic. I understand this may sound related to sleep and maybe it is because adhd and certain type of brain activity that looks similar to sleep waves has been linked. But similar things have also been linked to CDS. Anyways all this leads me to my next point.
Slow processing and poor working memory
Like others have mentioned, following something as simple as the plot and dialogue of a tv show is extremely difficult. I tend to have to look up what I watched afterward in order to know what happened and the significance of the plot. It sucks because it affects my ability to actually engage and enjoy media. I can still enjoy it but just not as much as I think others are. It doesn’t just stop at tv shows for me though. It’s music lyrics, movies, books, and even conversations. Conversations are very difficult for me to engage in. I tend to not be able to follow what people say at all. If I even lose track for a second I’ll immediately get lost. I tend to be talked at rather than talked with. I’ve been getting better at actually naming this to people but it’s very hard and embarrassing to do it both with people I’ve known for a long time and with new people too. Because I’d have to be constantly mentioning it. And I think that people often interpret that as me not caring. It’s hard to list everything that could be affected. The tangential and disorganized part of this explanation is attribute to adhd, however the general lack of being able to engage mentally or to have mental alertness at all seems to be more aligned with CDS. In the rare case I actually am able to hold onto what someone is saying, it feels fleeting and takes a long time for me to process and understand what they mean let alone come up with a response. I constantly feel like I lag behind in conversation and it makes hanging out in groups nearly impossible because I can’t keep up with what anyone’s saying. This has led to a lot of masking. That’s what I’m dealing with now. Trying to unmask and be upfront about it. To ask people to be slower and more patient with me. I think I didn’t mention the working memory part but yea the actual things my brain can hold onto feels “fleeting” as I mentioned. It fades quick. And I lose track of my own thoughts constantly or anything for that matter. When I got my adhd diagnosis, my psychiatrist actually told me that even for adhd, my processing seems unusually slow. I don’t think I have any kind of intellectual disability though. I’ve always done well in school. I could always pick up complex topics quickly, albeit I always had to learn on my own as many of the problems I listed already translated into the classroom. I’ve also got a BA in psychology and a BS in biology and I did those things simultaneously and graduated in just over 5 years. I can’t wrap this up succinctly so let’s move on.
Final thoughts and tangents
Anyways that’s mostly it. I am going to therapy now but it’s hard because a lot of the time I think that deductive reasoning approach by therapists lead to a lot of assumptions that end up not being aligned with my actual lived experience. But it’s good that there is a general acceptance by them that “the client is the expert on themselves ultimately.” So my therapist has been learning more about adhd and CDS alongside me and she genuinely wants to help. But describing the experience simultaneously feels like trying to grab smoke or push a car uphill (as someone else mentioned as well).
But yea that’s been my experience. I enjoy following the work of Russel Barkley and John Kruse. Mostly John Kruse these days. Even if you don’t think you have adhd, I do believe his content can be informative as at the end of the day these attentional systems are complex and may overlap with many unknowns. He covers other stuff like OCD, sleep, perfectionism, etc. We’ve merely focused on the symptomology of these disorders. Biological markers are being more emphasized now. And CDS is a topic growing in relevance in research as well. I mean even the biotypes of adhd are strongly challenging attentional disorders as they’ve been understood up til now. At least in how they’ve been classified. I won’t sugar coat it I am depressed but I sometimes have hope. I don’t think the scientific world acknowledges what many of us experience. Even if they know something as a concept the lived reality in neurodivergence is something you can’t really *know* unless you experience it. This world is difficult. I wish you all well. But please share your thoughts and experiences :)