I joined Twitter in October 2008, which was relatively early in its existence. For reference, it won the "Breakout of the Year" Webby Award in 2009. I didn’t post very much because 1) I didn’t think I was very interesting and 2) I didn’t understand the rules of Twitter. That really stressed me out. Over the years I’ve had little spurts of tweeting, but that would lead to anxiety as I was constantly worried that I didn’t say what I meant perfectly and was misunderstood, or that I was annoying people by retweeting more than tweeting, or everytime I tweeted about a contest. Once I overheard comedians talking about how to use Twitter and they said that using hashtags was deeply uncool1. I wanted to melt into the floor and I’m pretty sure I went home and deleted my tweets and retweets that had hashtags in them. Occasionally I would tweet something that I thought was very clever and it would be mostly ignored and I felt rejected and dejected. And in recent years I was afraid of interacting with the trolls. Overall, posting to Twitter was not helpful for boosting my mental health, but reading posts helped me learn about COVID and neurodiversity and many other topics not covered well by the other media I consume.
So, I didn’t post much. But I wanted to. I wanted to use my voice and I didn’t want to be so anxious about being myself online. I wanted to be part of the fun Blue Jays community and later the compassionate side of the long COVID and MEcfs communities. I was autistic masking and censoring myself in the physical world too, but it was easier for me to notice it with how I did and didn’t contribute to social media and online communities.
When I first realized I was autistic, it gave me an explanation as to why I’ve had difficulties with maintaining friendships. But it didn’t immediately tell me how to make friendships work or how to make new friends as a newly identified autistic person2. I remember joining a Discord that had many different channels for different topics. I had started watching Star Trek, so I sent an intro message there, but since I hadn’t (and still haven’t) watched every Star Trek episode from every series, I didn’t have much to add and I didn’t feel part of the group. I remember having a really sad conversation with my ex about wanting to make friends but not knowing how. I knew it wasn’t good for me to depend on him as much as I was for being social, but I didn’t know how to be myself with others. I felt overwhelmingly awkward and I hated not knowing how to solve this problem.
Over the past year I have jumped into the deep end of a few online communities, as I’ve written about. And they’ve been positive experiences! Sometimes scary, and I have spent hours ruminating on things I said or wrote to the groups. But I’ve also learned to chat without obsessing over my words. I’ve had fun. I’ve been my earnest self and at least twice I’ve stood up for myself or someone else and neither time ended in disaster. I’ve shared when I’ve been happy and I’ve shared when I’ve been sad. I’ve noted when I’ve felt unwell. I can’t say for certain, but I think I’ve been an overall positive community member and I think I would be missed if I left them3.
I still have a hard time conceptualizing the various levels of friendships, but I know I have a lot of people in my life now who are not good or close friends, but who mean a lot to me. And some people I no longer communicate with regularly, but are still people I care about dearly because they helped me learn how to love myself. I suppose I’m learning that relationships aren’t an all or nothing affair. I think I’ve been caged in my thinking and behaviour in part due to the limits of the English language. I need more words for explaining love and friendship! I wonder if other languages are more expansive in these ways and how it impacts relationships?
Anyway, the main topic I want to discuss this week is my experience using BlueSky for the past 10 days. I briefly used it last year, and then shut it down when I had the similar anxieties I described above regarding Twitter. I didn’t know how to be me or have boundaries. I made some connections and even had a call over WhatsApp with someone to compare our long COVID experiences, which was really nice. But I still felt so awkward. And I think that since I didn’t know who I was, but was starting to learn about unmasking, everything I posted felt fake. I didn’t have the energy to feel fake on the internet.
But now I feel more settled as a person. I use my voice in this newsletter and that has done wonders for my confidence. I write about hard things and while my readership is small, I don’t feel sad about that or rejected and dejected; I’m really grateful to all of you who read what I have to say. But the biggest thing for me is that I hit publish. I’m trusting myself to share who I am, including my more unpleasant characteristics, and that they sky won’t fall. I’m learning to not feel ashamed of everything I was taught to feel shame about.
It’s also helped me to crystalize within myself that I want to do what I can to help others feel more connected, more understood, and less shame too. I want the whole world to feel deserving of life and peace and safety. I used to think I needed to be a national hero, like Terry Fox, to make a differene in the world. But small changes add up and they can snowball into revolutions. So with every positive comment I was hearing about BlueSky, I thought that might be the place for me to go to spread small seeds of kindness and compassion.
Social media is definitely a place where it’s easy to go off the rails and become more dysregulated, so I decided to be very intentional with my time at BlueSky. For example, with Instagram, 90% of my time is interacting with accounts that craft, garden, cook, and post about cats or books. It’s a very calming place for me now.
With BlueSky, I decided that no matter how awkward it felt, I would reply to people who posted about their pain with compassion. I have quite a few posts that are along the lines of, “oh no [upset emoji] I hate when I have pain like that. I hope you can have a restful day and this extra pain goes away quickly [hearts emoji]”. Generally people heart my message and say thank you. I don’t think my message takes away the pain, but I hope it helps them feel a ping of compassion. I hope they feel less alone.
Sometimes I don’t have the vocabulary and I reply with only emojis. I would never have let myself do this before because I would think that’s too weird!4 But since learning and internalizing that all sorts of communication types are valid, I use what feels right for me. Those posts have also been liked, which is reassuring.
I post about the crafts I’m working on and share my finished projects. I post about COVID. I post about POTS and MCAS. I post about universal basic income. I post about compassion. The younger version of me thought I had to “pick a lane” and stick to just that. Would someone following me because of my COVID posts care to see my beginner crochet projects? But then, I thought that type of thinking was too in line with people who tell athletes and sports journalists to “stick to sports” and I don’t want to live by that attitude. So I share about all my interests, especially as this experiment was in part to practice being unapologetically me.
I reply to people who have questions when I have an answer, whether it’s what I’m currently reading (Highly Suspicious and Unfairly Cute by Talia Hibbert on audiobook) or how to use the red pin feed for now until a bookmark feature is introduced.
I’ve shared when I’ve been disappointed about something happening in my life and I’ve shared when I’ve been excited. I thanked a journalist and told her she made a positive impact on my life with her article on POTS and PEM and she told me it was one of the nicest things someone has said to her in a while.
I’ve learned about various scams and how to identify the accounts that might try to take advantage of my naïveté. I’ve subscribed to a block/mute list created by an expert at identifying them. I’ve blocked and muted other accounts that are solely hateful or scammy. I’ve had a respectful disagreement with someone about means testing for basic income.
I’ve congratulated strangers on their (or their family’s) sucesses. I’ve shared requests for mutual aid. I’ve shared a link to a free online harrassment bystander intervention workshop I’ve signed up for. Basically, I’ve been myself and done what I’ve been able to do to create the world I want to live in and IT FEELS GOOD. A summary of my account reads in part “There’s a strong focus on community and support…the account often seeks to foster kindness and compassion both for onesself and for others grappling with similar challenges”. That feels so good to read! I post like I’m not embarrassed to be me, because it turns out I’m not, for the most part, embarrased to be me anymore. What a way to live in this world.
This project to interogate apologies has been life changing work for me and I thank my extremely thoughtful, need to understand things, autistic brain for digging into it so deeply5. I’m not finished the work and I have ideas for dozens, if not hundreds of posts for the future. But I wanted to take a moment to reflect on how far I’ve come. It’s truly remarkable and I think it’s important to acknowledge the effort it has taken to get here. I’ve confronted a handful of personal demons and come out the other side a happier and calmer person. I can honestly say, despite all my health challenges, it’s good to be Kate. Thanks for witnessing my challenges and successes.
I used to live with 2 comedians and dated a third. I was around them a lot and deeply wanted to impress them!
Not all autistics have problems with friendships, but I think those with lots of friends happened to have gravitated towards others in the neurodiversity community because we are pretty good at being friends with each other!
This is perhaps weird, but I’ve created documents for me and my parents to fill out with all the important information that will be needed when we die. Best to prepare for death when it isn’t imminent, plus they recently asked me to be their executors when they die, so naturally I want them to do most of the work while they are still living. Anyway, in case I die suddenly, I have left my parents the contact info for various people I’ve never met in real life who run the communities I’m part of because I think they would want to know. I hope they would want to know.
I regret that before I understood I was autistic, I was sometimes harsh about other autistics and/or weird people. I wanted so badly to be accepted and I thought I had to be normal for that to happen. I think I also got upset when people did things I “wasn’t allowed” to do.
I don’t always like my brain, but this part I love!
I tried to make connections on discord too, I found some lovely people but they were all young! I've definitely found some better connections here! Glad you're feeling calmer as you find yourself, so true for me too!