Thread by @SarahLizzyLou

Some reflections on #longcovid 🧠 cognitive dysfunction and it’s impact on social life.
I’ve been writing these slowly over the last 3 months. I hope it’s insightful- especially to those who do not have long covid and want to understand “brain fog”. 🧵/18

Socialising is hard because of cognitive dysfunction & fatigue (the longer I use my brain, the more my brain doesn’t work). Complex tasks, like social interaction, are particularly draining because there are so many areas of my 🧠 that need to work quickly & in tandem. 2/18

A passing encounter is usually ok e.g. small talk with someone I know, but aren’t close to. Questions (and answers) are usually familiar and short. Its easy to play along, mask my struggles, smile, make excuses and be on my way. I think I appear “normal”. 3/18

Group conversation is the hardest: Everyone talks & responds to each other way quicker than I can. I can’t keep up. When I do speak, I’m aware everyone in the room goes quiet. I seem to break the flow. But everyone’s nice about it. I probably seem “a bit socially awkward”. 4/18

Listening to long sentences is like walking up a flight of stairs. It’s agony. I’m forced to stop early. I catch the 1st bit of the sentence + the last few words & try to fill in the gap to make sense of it.
Playing catch up requires extra energy, so I drain quicker. 5/18

Social etiquette is beyond me.
A huge amount of cognitive energy gets spent on self awareness in social situations. Not just moderating myself, but also making sure what I say can be understood by everyone; listening well; reading the room etc. 6/18

Pre-LC I strived to make everyone in a group conversation feel included & to make sure my contributions were appropriate, interesting & relevant. I could listen well & balance curiosity & sensitivity when responding. I knew when & how to steer the conversation if needed. 7/18

I got jokes. I had awareness of time, could read body language & tone of voice etc. etc.
I was a very social creature, so practicing all these skills was a key part of being me.
I feel I have lost the ability to do so much of this and I wonder if it will ever come back. 8/18

I used to be polite: remembering to say the thank yous and ask the pleases. Now, I don’t remember to do this much. Sometimes I think I have and I haven’t. Other times I repeat myself over and over to make sure I get the pleases and thank yous in there. It’s important to me. 9/18

It feels like I’ve lost my personality. I’m grieving me.
I am deficient in confidence.
Questions:
Do I come across as rude or blunt or just slow? Did I offend anyone? Was my facial expression appropriate? Did my words match my thoughts this time? #aphasia 10/18

My internal monologue says “I think it’s ok.”
“People are nice and very forgiving.”
“I’m sure it’s fine.”
“You don’t have the energy to analyse your memories anyway.”
“No one will remember your blunders.”
Coping strategies. 11/18

Meeting new people:
They are getting to know a subdued version of me.
I’m not anxious about meeting new people. It’s just hard work and no longer fun. I don’t feel they’re getting to know the real me and I struggle to get to know, interact with & remember them. 12/18

So since LC, my social drive has been non-existent - until I began meeting #pwLC on social media. It was such a relief to find ppl who understood. I’m still self conscious but it’s easier to go with the flow & embrace the weirdness bc they probably have these issues too. 13/18

Family & close friends that “get it”:
Everything social becomes way easier. I can let a lot of the etiquette stuff go and I trust that they know the true me and can see how I’m different now. They can interpret my altered expression more accurately than anyone else. 14/18

It also helps that they have adjusted: they speak slower, in shorter sentences & tend to focus on simply enjoying my company which feels… like I’m being loved well. I am very grateful to have this in my life.
We got here with a lot of time and effort on all sides. 15/18

In terms of where I’m at now (almost 10 mos in), I’ve seen improvement in many areas of #aphasia and some improvements in cognition too. But it’s slow.
I’ve started meeting friends one-on-one at home and I’ve been finding this fun again. But I can’t do this very often. 16/18

Friends and family who “get it”, know to keep asking to meet even if I cancel over and over again due to unpredictable symptoms.
I think many social circles diminish over time with this kind of attrition and/or communication barriers caused by cog impairment. 17/18

So overall, having #longcovid 🧠 makes socialising difficult. It’s easy to get isolated & lose the benefits that come with an active social life.
But I think that with effort & understanding, loved ones can bring some of these benefits back into daily life. END
#LongCovidDiaries