The realities of living with MS-related cognitive impairments
When I process slowly or can't remember, I could use some understanding
Of all of the cognitive functions that multiple sclerosis (MS) can affect, memory and processing issues have been my primary burdens. I’ve found them difficult to navigate and manage, especially when others don’t fully understand the extent to which they affect me.
My MS-related cognitive impairments have resulted in poor focus, slowed thinking, memory issues, and a whole lot of brain fog. I often struggle to find the right words to say because my brain doesn’t process information immediately.
During these moments, I feel overwhelmed and helpless. Conversation partners may think I don’t care enough to keep up, but that’s anything but true. When I’m responding slowly, I push myself to think faster, which creates strain and almost always increases the brain fog.
When my brain is not my friend
However, I’ve met many extremely understanding people who grant me grace and patience. My lovely and understanding graduate school adviser, for instance, has always allotted me extra processing time. When she gives me an influx of new information, she takes the time to ask me if it’s too much at once, and she doesn’t expect an immediate response or reaction. That allows me to feel comfortable and secure with my thinking, and I don’t feel forced to overwork my brain to offer a half-considered response.
I also have difficulty concentrating, specifically when two things are happening simultaneously. During these moments, my brain feels on fire because I cannot split my attention equally, which leads me to pure and utter panic. That’s another instance of people thinking I don’t care and am not paying attention to them, when what’s really going on is that many things are happening at once and I’m flustered or confused.
For example, I cannot talk and drive. When I’m behind the wheel and my passenger is trying to have a conversation, I have trouble listening and responding. I remember when my uncle taught me how to drive; he kept trying to talk to me until he realized I was extremely focused on the car and the road, so I wasn’t talking back. Since he picked up on my cues, he stopped trying to converse and let me pay full attention to driving.
The biggest burden of them all is my memory issues. I have trouble recalling recent conversations, things I and others have said, or tasks I’d planned on doing. When my lack of memory is apparent, people think I don’t care enough to remember or that I just wasn’t listening, both of which are untrue. These assumptions make me feel horrible, and I mentally and emotionally beat myself up because I can’t remember — even though I know it’s not my fault.
Some people can remember conversations word for word and recall memories in vivid detail. In contrast, others may only be able to provide the gist or summary of a conversation, if that. I wish people understood that when I can’t recall something, it’s not fun, and it’s not a quirk I flaunt when forgetting seems convenient.
I wish people realized that not all of our brains work the same way, and that’s OK. Even if they don’t understand how MS can affect cognition, they shouldn’t make others feel less-than. Some of us simply need more time.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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