MS - Are our memories really that bad?

Memory is a funny thing. Even without conditions such as MS, are people’s memories as accurate as they think? I don’t think that anyone can be totally relied upon to recall a perfect memory of something, even relatively healthy people naturally fill in the blanks. Perhaps we all remember different details of a time in our lives, which really is just us seeing things from different perspectives.

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I’ve found that it can sometimes be a sensitive topic to question a non-MSer’s memory; I often feel that because I have MS my recollection of events must be wrong if it differs from others.

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There are times that I just don’t pay attention, or I'm brain fogged, so the recording part of my brain might not even be storing the information. Other times I’m zoned out, off in a world of my own! Sometimes the information takes a while to retrieve, like with an old hard drive, but it is there. Sometimes I need more time to respond (word blindness), so I ask them to repeat the question.

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I also might be neuro divergent, so I like to repeat myself on my special interests – which seems to be a prompt for people to say to me: “Erm, Jo, are you okay? You’ve already mentioned that.”
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I also repeat myself on subjects in conversations if it's relevant, but this adds to the questioning of my memory. I appreciate that with MS it’s likely that I might forget things more than others, but it doesn’t mean that this is always the case. 

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When people always check my answer to a question with someone else, it makes me worry that maybe my memory is that bad, but I don’t think that it is. It piles on self-doubt which is one less stress that we could all do without.

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I often feel frustrated and even unintentionally gaslit. I don’t like to use gaslit lightly, but to highlight how I feel that others make me question my view on reality. It also makes me think how vulnerable it can make us, and therefore someone could take advantage of that. For instance, in a worst case scenario, if you thought you might be suffering from dementia, and possibly give someone you trust Power of Attorney over your affairs, thus giving away your autonomy to look after yourself. I know that my last example is a bit extreme, I worry too much at times, but there are some questionable people out there.

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Confidence probably has a role to play in how people perceive your recollection of a memory too, as mentioned above, I’m often questioned, so therefore I will question myself. Whereas other people in my life will sound confident on their recollection, even if I’m sure my version of events is correct.

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I don’t want to sound like I’m in denial about my cognitive issues, but I wish that people who underestimate those with a cognitive impairment wouldn’t default on the MSer always being wrong.

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There are some things that I do to help myself, setting reminders on my phone being one of them. What do you do to help aid your memory? It’s an exhausting job being chronically ill, the medical admin and self-advocacy alone tire me out. Some days I’m so exhausted or in pain that the thought of exercising my brain doesn’t sound appealing, although I like to keep this relaxed by listening to audio books, playing video games or watching TV. If I have the energy to read, then I’ll read a book. Some days, I might be able to write (thanks to dictation and reading software). I started an Open University degree a couple of years after I was diagnosed, which kept my brain in gear. It took eight years with a couple of deferrals, but I think it helped me, even when the times were tough.

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I know that our friends and family can often be so helpful, but I think there are a few things that they can do to be more considerate towards us, and to help us keep our memories at their best. I would ask: please be patient, don't assume/accuse us of having worse memories than we already do, and finally offer help if we're REALLY stuck or wait to be asked, otherwise I find that it is both patronising and condescending.

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Maybe I’ve been overthinking it, and maybe I’m in denial, who knows?

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Thanks for reading.

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