Spoon Saving Social Media Tips and How to Resist Online

The current political landscape is having a devastating impact on the health of those within the disability community. A look at how we can save spoons and leverage our unique powers to resist.

A few days ago I posted on social media reminding my followers that the unrelenting 24/7 news cycle can be incredibly damaging to our nervous systems - even if we manage to unplug. Our bodies are incredibly intuitive and they sense and respond to danger, and there’s a lot of it going around right now.

I was overwhelmed by responses from other chronic illness patients who reported that they’ve been in a flare since Trump’s Inauguration and couldn’t figure out why. He is the ‘why’. The state of the world has thrown us all into a tailspin of devastation, despair and fear… and our bodies are fighting back.

Many people with chronic illness carefully manage their lives to avoid any potential flare ups. We abide by the ‘Spoon Theory’, by Christine Miserandino, which is a way of explaining energy expenditure when dealing with disabilities. If you’re not familiar with the ‘Spoon Theory’, it goes as follows:

Every person has a finite amount of energy. That energy is referred to as ‘spoons’. You start each day with a specific number of spoons, and disabled people have less spoons than our non disabled counterparts.

Each thing you need to do in a day will take a certain number of spoons. Getting out of bed? That might be one spoon. A shower? Three spoons. Cooking a meal? Five spoons.

When you run out of spoons, you’re unable to complete additional tasks and may face a flare. You can start the day in a spoon deficit if you did too much the day before. Spoons need to be carefully managed at all times, and even managing spoons can take energy we may not have.

Most of us become pros at managing our spoons. We learn our triggers, our energy limits and how to stay within our budget.

No matter how good we get at it, there will always be things that can throw our bodies off. Infections, emotional stress, severe changes in weather and/or air quality are some of my biggest spoon robbers. No matter how much I rest, plan, medicate and baby my body… those things can put me into an energy deficit in a hurry. That deficit becomes a flare within hours if I’m unable to identify and eliminate the offending trigger.

This is one of the main reasons I’ve repeatedly said that disabled people are the canaries in the coal mine. Anything that can hurt a non disabled person will likely hit us faster and harder. During the catastrophic wildfires in Los Angeles, disabled people lost their lives because they were unable to evacuate.

When you lose your health you lose a degree of resilience to cope with natural disasters, evacuations, climate change and food and medication shortages. Survival becomes harder. You have fewer spoons.

Photo by Teslariu Mihai on Unsplash

Image Description: A photo of five black spoons in a row. The fourth spoon is broken.

We Are All Low on Spoons Right Now

The news cycle since Trump’s inauguration is basically robbing disabled people of our spoons the moment we wake up in the morning. The never ending onslaught of terrible news feels like having knives thrown in our cutlery drawers without our consent.

You don’t even need to be American for it to be impacting you. I live in Canada and have been in a spoon deficit since Jan 20th. It’s not just his threats of tariffs and annexation (although those are doing a number on my nervous system) but also my concern for all my disabled and marginalized friends and loved ones in the United States.

Even if I unplug, my body still knows my friends are in danger. It still knows they’re scared and in pain and unable to escape the horror that’s unfolding all around them. Their pain becomes my pain no matter how hard I try to decompartmentalize.

At the end of the day we are a community. We carry each other through the tough times. Our love and support knows no borders, so when a group of us are hurting we all hurt.

I think that’s why I’m so bereft of spoons.

The other complicating factor that is unique to the disability community is that many of us are bedbound or housebound and the majority of our connections occur online. We’ve been abandoned by friends and family, mistreated by those closest to us, and as such we live lives of quiet despair and isolation.

We find solace and community in our digital spaces. They’re a safe place to connect with like minded people. To be vulnerable about our struggles. To get support from those who understand how hard it is to live with chronic illness. How painful it is to be abandoned. How scary it is to be disabled in Trump’s America.

Unfortunately accessing those online connections means seeing the news. It’s virtually impossible to avoid. We either have to unplug completely and give up a necessary lifeline, or subject our nervous systems to the unrelenting negativity that is filling social media spaces right now.

Photo by Julien L on Unsplash

Image Description: A woman with red hair in a black and white striped shirt is screaming

How Can We Protect Our Community and Safeguard Our Spoons

I’ve heard from many readers that they’ve been in a flare since Trump took office. I also know that most of us rely on online spaces for needed connection and friendship.

How can we protect ourselves without giving up our necessary community? This is the question I’ve been struggling with all week as I try and limit my time on social media and notice my nervous system getting worse regardless.

I don’t think it’s reasonable to expect us to be able to completely unplug, so perhaps a better way forward is to take proactive steps to safeguard online spaces.

In the spirit of saving spoons, I’ve created a list of my top suggestions to make online engagement easier on a chronically ill nervous system. Please feel free to add your tips and tricks in the comment section and let’s build safer spaces together!

• Be intentional with what social media you use (consider moving off platforms owned or run by Trump supporters like Twitter/X and Meta)

• Reduce time spent on platforms that have algorithms which reward aggro style engagement and division (example: arguments drive the most number of views so your comments will be overwhelmingly negative)

• Curate your following carefully. Be intentional with who you follow and engage with. When sites are algorithm driven there’s only so much you can control, but on social media platforms like Bluesky and Mastodon your feed is determined by who you choose to follow

• Block early and often. Never feel guilty for protecting your online space

• If there’s someone you don’t want to block who’s sharing content that’s harming your health, mute them until you feel safe to engage again

• Mute keywords and topics relating to subjects that are stressful. If the current political climate is causing you stress, consider muting words like Trump, Musk, Democrat, Republican, cabinet, confirmation, DEI etc. You can revisit and add or remove words to curate your feed to your liking

• Have a social media “buddy system”. Pick a few trusted mutuals and make an arrangement whereby you trade off on days to pay attention to the news. That way you can focus entirely on community or fun, and trust your buddy will reach out if something is urgent enough that you NEED to know right away

• Consider having an alt account that only engages in fun, niche topics. Make a point of avoiding and muting all news and political content/accounts with your alt. That way you can use it when you’re overwhelmed and need a distraction with low odds of stressful content popping up

• Have a cool down strategy for when you log off. Maybe it’s five minutes of meditation or going for a walk in nature. Do something positive for your body and mind to help shift it away from the social media mindset and back to something calmer

• Be mindful of the content you engage with, especially on algorithm based sites. The more you like or repost certain content, the more of that type of content you can expect to see in your feed

• Listen to your body while you’re online. Notice that you’re getting tense? Heart rate or blood pressure rising? Take a break. It will be there when you return

• Don’t feed the trolls! This rule is so simple and yet so easy to forget. You don’t owe anyone an explanation, and when you argue with trolls online you’re almost never going to win. Save your energy for those who deserve and appreciate it

• Check in on people you care about whose behaviour suddenly changes, and encourage others to do the same. If someone suddenly stops posting? Send them a DM and let them know you’re thinking about them

• If you have a core group of people you regularly engage with, consider moving to a Discord or Signal group chat where you can control who comes in and what subject matters get discussed

• Make use of productivity apps on your devices which can help monitor how long you’re on social media and remind you to take breaks

• Have fun! Between the trolling, negative algorithms and general state of the world it can be easy to forget that social media was once used primarily for fun and genuine connection. With a little effort and focused intention, it still can be!

I encourage you to implement whatever tips you think will work best for you, and ignore the ones that don’t resonate. Most importantly, be kind to yourself and other members of the community. Give yourself permission not to be informed 24/7.

I know that as a disabled person I feel like I don’t have the ‘luxury’ of being an ostrich. I can’t risk putting my head in the sand and ignoring the state of the world, because the things happening all around us will impact me harder and faster than my non-disabled peers.

What I’ve learned is that being informed is crucial, being constantly plugged in is not. If you need a break, take it. No guilt. If someone else needs a break, be understanding of their boundaries. If you have a disagreement online try to be as kind and respectful as possible because we are all emotionally raw right now.

These are skills and changes that will take time. It’s not easy to let go of the desire to remain constantly plugged in. It’s hard to resist the urge to feed trolls or escalate online disagreements. Recognizing that we can’t change what’s happening in the moment so we don’t need the constant stream of information is an important first step. We can set a firm boundary and commit to not allowing social media to steal our spoons.

While we may not be able to bring about instant change, we can still make a difference.

We may not be able to stop Trump from saying whatever harmful hateful rhetoric he wants to spew, we certainly can’t stop Elon from taking over government departments and cutting necessary services. We can’t stop the 24/7 news cycle.

But we are not powerless. We need to save our strength for the fight ahead. We need to be smart about how and when we choose to resist.

First things first, if you’re feeling helpless right now, know that you’re not alone. I feel helpless too. I think most of us do. It’s hard to see so many terrible things happening and feel like you have no direct power to stop it.

Disabled people are built for resistance. Our health challenges may make it difficult to withstand stress and upheaval, but we are also skilled at problem solving, contingency planning and adapting to a world that isn’t build for us. We are adept at survival.

This is why we should be included in all resistance efforts.

The world is shifting beneath our feet. It’s becoming colder, crueler and less welcoming of all marginalized individuals.

In May I wrote an article about mask bans, Covid policies and the rising tide of ableism and eugenics. People said I was overreacting. They said that they weren’t seeing what I was seeing. It’s not even a year later and the full scope of ableism and discrimination is on display.

We Are Witnessing Real Time Eugenics... and People Don't Seem to Care.

As I said back then, you can’t label entire groups of people expendable and not lose your moral compass. You can’t stay silent while anti-maskers celebrate mask bans and tell us that we’re to blame for Covid policies and ‘deserve’ the harm that’s coming to us.

You need to stand up and fight for us. Perhaps if more people had fought back then, we wouldn’t be in the mess we’re in now.

Photo by Brett Jordan on Unsplash

Image Description: Brown scrabble pieces on a white background that read ‘Be the Change’

Our Unique Power to Resist

It’s time that the disability community recognize our unique power and ability to resist.

We have never been welcomed. We’ve always been outcasts. We fight for our survival every single day. We’ve never felt ‘safe’ because the world is not a safe place for people with disabilities. We aren’t surprised by what’s happening right now because we saw it coming. We are ready to meet this moment.

We were built to fight back because we fight every single day of our lives. We fight ableism, eugenics, hatred and discrimination. We fight family and friends who should have our backs but turn away from us instead. We fight doctors and healthcare workers who seem determined to gaslight and abuse us when they should be helping us. We fight oppressive systems of government that refuse to provide us with safe public spaces, healthcare or social supports to keep us above the poverty line.

Most of all we fight our bodies. To live with chronic illness is to live in a constant state of fight or flight. To never truly feel safe or at rest. It’s exhausting and frustrating but it’s also incredible preparation for the mess we find ourselves in now.

Non disabled people have no idea the amount of planning and preparation we go through just to safely get through the day. We have contingencies upon contingencies. We back up our back ups.

Many folks are scrambling because this is the first time they’ve felt the rug pulled out from under them. The first time they’ve felt so betrayed and unsafe that they struggle to function and organize. The first time they’ve felt the danger that we feel every single day.

This is our power. This is how we can help.

We want to be included in the resistance effort. We don’t want to be left behind. Moreover the skills we bring to the table will be invaluable during the tumultuous times that lie ahead.

How Can You Include Disabled People?

The single best way you can include the disability community in your resistance efforts is to ensure they’re accessible to us. All too often we want to participate only to find out that masks aren’t required, an event is being held in a space that isn’t accessible and/or online options aren’t being provided.

I’ve seen a lot of people suggesting that online organizing isn’t as effective as boots on the ground, and I ask folks to consider how that makes people like me feel. I can’t leave my home. I’m mostly bedbound. If boots on the ground resistance is the only kind that’s seen as ‘legitimate’, I’m automatically left out.

There’s a difference between discouraging people from endlessly posting into a void and discounting online organizing. We should be encouraging virtual accommodation options as much as possible.

You can’t be boots on the ground if you lose your health. Making your resistance efforts Covid safe and accessible will protect everyone involved. It will keep the activists healthy so that they can continue fighting. It will allow disabled and high risk individuals to participate.

If you’re concerned that online activism isn’t safe because it might be monitored, consider moving to an app like Signal. Use codewords when you’re on public social media apps. Get creative. There are ways to ensure safety while organizing online.

You can also ask disabled people how they feel they would be able to add value. You might be surprised by the answers you get! I may not be able to protest or attend in person meetings but there’s a lot of organizing and resisting that I can do.

Resistance efforts should have robust contingency plans. What to do if people get arrested? What happens if an organizer gets sick? How will you fund legal fees should they be required? How can you reduce the risk of people infiltrating your efforts?

This is where someone like me will excel. I’m a contingency kind of person and I can help you plan for anything and everything that could possibly go wrong. I can help you learn how to fundraise because many disabled people rely on mutual aid for their literal survival. I can assist with protecting organizations from bad actors because I’m constantly having to adjust my online spaces to keep out the ableists who seek to do me harm.

Welcome disabled people into the resistance. Encourage them to participate in ways that are safe and accessible to them, and I guarantee that you will be glad you did.

This is a big topic that is in constant flux because we are seeing so much change within the world right now. If there’s interest I’m considering doing a second piece which will focus specifically on online activism and how we can make it as effective as possible.

If that’s something that would interest you please send me a message, comment and subscribe below!

How are you saving spoons right now? What social media platforms are you finding easiest to engage with? Let me know in the comments below and let’s help each other keep our online communities safe!

Are you involved in activism or resistance efforts? Do you want to be? I would love to brainstorm additional ways we can include disabled people in the resistance while rationing spoons as much as possible.