Since July 2020 when I became catatonic I’ve experienced cognitive dysfunction. It began (like the catatonic symptoms) over a weekend, and it was so rapid and severe in its onset I felt like I had suffered a major head injury. These symptoms have continued through to now but slowly lessening over time. I didn’t have any explanation of what had happened to me in terms of this cognitive dysfunction, and it was far more distressing to me than the more obvious depression symptoms (I had experienced suicidal ideation and negative thinking in the past and in knowing they were due to depression I could reassure myself of their cause).
In the first two years of illness I more often than not didn’t have the capacity to advocate for myself or ask questions of healthcare professionals, and when I could reference the head injury -like symptoms all I was told was “it’s part of the depression symptoms” and “it takes time to recover”. But that didn’t feel like an adequate explanation and no one put into words the symptoms I was facing or gave me coping strategies to deal with this significant cognitive impairment.
I have tried searching online for these symptoms throughout the last couple of years in a search for answers. I have zero official diagnoses but throughout my life I’ve been sure I have some level of dyslexia and ADHD, so part of me thought maybe I was living through some heightened version of those symptoms while my brain was mush. I was grasping at straws.
Fast forward to maybe 10 months ago I spotted someone online talking about their own experience of a depressive episode and they used the term “pseudodementia” to describe their cognitive dysfunction. If you search online for this term suddenly there is a dedicated wikipedia article and journal pages discussing this whole set of symptoms. For years now I have had to be my own detective about my health, and to see detailed descriptions of these symptoms in black and white text after all this time felt both affirming and frustrating given I hadn’t been offered this information before.
In the overview of the pseudodementia (also known as depression-related cognitive dysfunction) wikipedia article it says:
“Specific cognitive symptoms might include trouble recalling words or remembering things in general, decreased attentional control and concentration, difficulty completing tasks or making decisions, decreased speed and fluency of speech, and impaired processing speed.”
This fit the exact symptoms I had been experiencing. In 2020 all of these symptoms were very severe. Once my initial lot of antidepressants had kicked in I could work myself out of a semi-catatonic state to move my body and engage with my immediate environment more and more. However I had no short term memory, no sense of time, zero attention span to the point I felt in agony watching 90secs of video or trying to listen to someone give instruction. My memory recall was extremely poor. I would often forget basic nouns when attempting to speak like they no longer existed in my brain. I spoke slowly, often stuttering, and often struggled to process what people were saying to me. I would often say “I don’t know” in response to questions and then feel upset knowing I should know. Decision making and problem solving was excruciating or simply impossible. It had eradicated every scrap of my personality, as where the depression made me feel constant physical and emotional pain, the pseudodentia had robbed me of my wit, my memory, and any ability to engage in simple tasks making me feel very vulnerable.
I cannot describe in words how distressing it was. I could imagine being able to get through and over the depression (even when it was a distant hypothetical) but I had no context for the cognitive impairment I was suffering. My parents who became my carers had no context for it too and it was a long learning curve to work it out together.
Over time with a lot of patience, endurance, and with the care from my parents I’ve managed to find a way through. But I just feel angry with (1) the way mental health illness is obscured through cultural taboo and (2) the poor health care I’ve received throughout this illness. The pseudodementia / depression-related cognitive dysfunction is an invisible disability that will affect many people with mental health conditions but for whatever reason seems to be little talked about.
The importance of vocalising personal experiences of illness
I don’t want others to suffer as I have in ignorance, and I wouldn’t want the same fear and confusion my loved ones faced to hit other’s loved ones as hard. Be the change you want to see in the world. If I want the taboo and ignorance of illness to be lifted I’m gonna do my part.
If that anonymous person on the internet hadn’t used the term pseudodementia and talked about their experience I would never have found that wikipedia page.
Other people’s explanations of their health have been invaluable to me, in both not feeling alone as well as knowing it’s possible to recover or live well with health challenges. I’ve had various people say that my explanations of my ill health have been helpful for them understanding their own health or the health of loved ones too.
Even small conversations can leave people feeling validated in their own experiences or feel better equipped to face their day to day life.
There’s a guy in his late 60s / early 70s that has a neighbouring plot to my allotment garden. I haven’t seen him much over the years I’ve had my plot, but over the summer I started to see him more and we started giving each other a friendly hello. The first couple of conversations we had were about composting and back-saver spades, and then the next time we spoke he explained a series of physical health issues he had faced over the past couple of years as the reason he hadn’t been around much. He said he’s been left with what sounds like PTSD symptoms from the health events and then said “I now have this thing called pseudodementia”. Which is the first and only time so far I’ve heard someone say the word out loud.
I said oh I think I have that too, and said I’m recovering from a depressive episode. That allowed him to feel like he could explain more on what his experience had been. As he described what it had been like day to day for him I could corroborate the symptoms with nods of recognition and detail similar moments. And by the end of the conversation he seemed like a weight had been lifted.
He got diagnosed with pseudodementia because he’s in the age category where they might start looking out for Alzheimer’s, and so to rule that out he was found to have pseudodementia by his GP.
I asked if he had found difficulty reading since the symptoms started, as that’s something I noticed early on in my own symptoms. He had a surprised me too recognition, and explained he hasn’t been able to read a newspaper since suffering the symptoms. Reading isn’t just comprehension, it relies on short term memory to remember what is expressed from one sentence to the next, it requires attention and information processing, which are all impaired by pseudodementia.
When we chat now it’s back to compost and methods for making organic fertilisers. But we know each other gets it and can see in front of us an otherwise normal looking friendly person.
Oh and I really miss reading, but I am getting a lot better at it. 2024 was the first year where I’ve been able to do more creative thinking projects, and importantly I feel joy from these activities. The pseudodementia symptoms are definitely easing for me. Even now in winter when my brain is sluggish and I get sad if I don’t blast myself with a daylight lamp. I’m definitely better and happier and able to engage with the world around me. Even though I’m not yet fully recovered the health I have is very precious to me and I’m infinitely proud of myself for getting this far.
