Digital Wellness for Chronic Illness in the Time of Covid 19 – Managing Social Media

Digital Wellness for Chronic Illness in the Time of Covid 19 – Managing Social Media

When I woke up this morning and signed into my social media feed, the first pose I saw said “‘The attitude of gratitude always creates an abundant reality’ ~ Roxana Jones” with the hashtags #gratitude #motivation #positivity #blessed. Somehow, all it made me feel was #unmotivated #negative and #irritated.

The next social media post I read this morning was the polar opposite of the first. It was about the untold cost of the lack of medical care for non-covid illnesses during the lockdown. Brutally accurate, but also triggering. In April, I was supposed to  have a pain relieving nerve ablation surgery, which I’d been waiting almost a year for, but it got cancelled, like so many other surgeries and procedures. Now, it’s up in the air, and my pain is getting worse.Needless to say, after that, I felt #drained #exhausted and #depressed.

Social media is an important lifeline for people with chronic illness, and science says it’s actually good for us to use. Since few of us know other people living with illness in real life, social media offers a way to connect with other people who can actually understand what you’re going through. Being able to interact with other people when you’re stuck at home is a blessing, rather than a curse, most of the time. So it’s especially problematic if social media is managing you, rather than the other way around, during the covid19 pandemic.

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The Attitude of Gratitude

I do believe that gratitude is a potent antidote to the negative self-comparisons that we all make, especially when illness takes away careers, mobility, friends and life roles.

Re-focusing instead on moments of connection, natural beauty around us, or having the basics of life, which we take for granted and are absent in so many parts of the world, does make life better.  Research shows that cultivating thankfulness improves sleep patterns, benefits the immune system, deepens relationships, increases compassion, and generally improves quality of life.

But gratitude shouldn’t become another standard by which you judge yourself for succeeding or failing, or whether you have cultivated “enough” thankfulness yet. Especially right now, when our lives have been uprooted by a global pandemic.

Social media already makes us more prone to negative self-comparisons. In the era of coronavirus, images of other people’s joyful family activities, freshly baked bread, fitness achievements or motivational quotes, which are intended to be inspiring, can have the opposite effect. I feel guilty for feeling negative about positivity posts. You wonder “why aren’t I living my best pandemic life right now?” But social media can create emotional pressure that backfires, and #Motivational Monday becomes #UnmotivatedAllDay.

Remember that we can have two feelings at the same time. We can feel grateful for the sacrifices made by front-line workers, for having a roof over our heads and food on the table, and for not getting covid-19, but at the same time, also feel overwhelmed, isolated or frustrated.

I think a helpful rule of thumb, when you’re posting on social media, is to pause and reflect for a moment about whether a post could seem judgemental or preachy, or ask yourself if it portrays an idealized “perfect pandemic life.” For example, I’ve seen celebrities who say that while quarantining together they are grateful because “my husband and I haven’t even had one fight yet” or “we’re creating our favourite memories yet!” Instead, I think it’s better to balance the silver linings of the coronavirus pandemic – like reconnecting with family members – with emotional honesty about the difficulties you’re facing too. One therapist writes:

“Other popular social media posts these days encourage people stuck inside to emulate Shakespeare or Isaac Newton. According to these posts, Shakespeare wrote King Lear during a pandemic lockdown, while Newton invented calculus. These suggestions are often not very helpful.… We need to make sure we don’t push what is working for us on others. We need to use empathy more than ever right now ” (CBC).

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Too Much News is Bad News: Headline Stress Disorder

Unfortunately, 2020  seem to be victim to the Chinese proverbial curse: “May you live in interesting times.” And, limiting screen time isn’t always enough to overcome the stress of negative news. Eventually, you have to check the news feed, even just to stay informed about public health updates, coronavirus lockdown restrictions, and reopening policies. This is especially important for those of us with chronic illness, who could be severely affected by coronavirus, triggering pain and exhaustion. Not only that, but knowing how and when you can get the medical care you need for your usual illnesses is vital for managing your health.

Have you heard of “Headline Stress Disorder”? Me neither, until I did some research into stress caused by reading news about social suffering. You don’t need to personally have been infected with coronavirus, or know someone who has, to feel anxious, worried or sad about how it is affecting people all over the world. It’s an unhealthy form of individualism that says “but you don’t even know those people, so why should you care?”

Headline stress occurs when “repeated media exposure to community crises [leads] to increased anxiety and heightened stress responses that can cause harmful downstream health effects, including symptoms that are similar to post-traumatic stress disorder” (Everyday Health). The constant stream of alarming news repeatedly triggers your fight-or-flight response, and the release of the stress hormone cortisol.

Media Diet: How to Navigate Social Media During Stressful Times

I found that a ‘media diet’ has helped to prevent information overload. Social media tends to be a more overwhelming place to get your news from (never mind a source of misinformation), compared to tuning in once a day to a morning news update or nightly news breakdown from a trustworthy news site. A longer format like in-depth podcast or investigative article can be less triggering than scrolling through multiple headlines and the resulting (often justifiable) outrage. Looking for good news, and stories of communities coming together, can also act as a counterweight to the negative stories.

We can be more intentional about how we use social media during this time. For example, you can join in Twitter chats or search by hashtag, such as #fibromyalgia or #spoonie, and scroll through posts on that specific topic – thereby avoiding news or pandemic-based posts. This can be a good way to maintain contact with online friends, which is often an important source of connection for people with isolating illnesses, while also preventing headline stress.

Ultimately, being self-aware while using social media is the best way to know when it’s time to sign out. It’s okay to give yourself some extra self-care after reading or hearing something upsetting in the news. We aren’t meant to be robots, and there is no right way to handle a pandemic. Sometimes just acknowledging your anxiety or stress and getting some fresh air or having a cup of tea can help you to process headline stress. There’s no stigma about talking to a therapist if you need additional support during this time.

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Colino, Stacey, (April 23 2020). Everyday Health. The News Dilemma: How to Avoid TMI During a Global Pandemic

Moss, Jennifer, (April 18 2020). CBC. Feeling ungrateful or demotivated during COVID-19? Don’t feel guilty.

On this blog, I have written about how ableism puts unfair barriers in place to prevent people with illnesses from participating fully in society. I have talked about how women are often disbelieved and dismissed by the medical establishment. But I have failed to write about how black people, indigenous people, and people of colour are at a greater risk of developing pain and illness, and undertreated for their conditions, compared to white people. As a white woman, I have been in the privileged position being able to disregard racism and its effects. But silence is complicity.

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In a recent post, I wrote about how I realize that I have to do better. I shared links to powerful black female voiceswriting about their experiences living with illness and disability, because right now, their voices are more important than mine.

But I thought that I should go deeper into the process, as a white person, of unlearning my own internalized privilege and racism and how to become an ally. Perhaps these are words you have read recently, but you aren’t sure what they mean in practice.

To understand racism, you have to understand the difference between individual racism (card carrying KKK members who hate anyone from a racialized group) and systemic racism (in which white individuals benefit from having power within social institutions and reproduce that power in a way that oppresses racialized groups).

White privilege helps to maintain systemic racism. This includes benefiting from unearned advantage due to being white, and keeping that privilege through active means, or simply by remaining ignorant and silent about it. For example, white privelege includes the fact that you are more likely to be believed and treated for your pain or illness. (And since ableism and sexism already make it hard to get adequate treatment, you can begin to see how pernicious racism in medicine is for people of colour).

If you are white, and haven’t really considered what that means for how you are treated differently in society compared to people of colour, here are some examples of the unearned advantages you have because of the colour of your skin. Peggy McIntosh explains that:

“I have come to see white privilege as an invisible package of unearned assets that I can count on cashing in each day, but about which I was “meant” to remain oblivious. White privilege is like an invisible weightless knapsack of special provisions, maps, passports, codebooks, visas, clothes, tools and blank checks.” Here are some examples she identifies:

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  • “ If I should need to move, I can be pretty sure of renting or purchasing housing in an area which I can afford and in which I would want to live. 
  • I can be pretty sure that my neighbors in such a location will be neutral or pleasant to me. 
  • I can go shopping alone most of the time, pretty well assured that I will not be followed or harassed.
  •  I can turn on the television or open to the front page of the paper and see people of my race widely represented.
  •  I do not have to educate my children to be aware of systemic racism for their own daily physical protection.
  • I am never asked to speak for all the people of my racial group.
  •  If a traffic cop pulls me over or if the IRS audits my tax return, I can be sure I haven’t been singled out because of my race.
  •  I can go home from most meetings of organizations I belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance or feared.
  •  I can chose blemish cover or bandages in “flesh” color and have them more or less match my skin.”

When I first read her article, White Privilege: Unpacking the Invisible Knapsack, it really opened my eyes for the first time into the operations of everyday racism, and my own ignorance and participation in the effects of systemic racism. But understanding isn’t enough on its own. 

> Read this primer on becoming an ally: 

TO BE AN ALLY IS TO…

  1. Take on the struggle as your own.
  2. Stand up, even when you feel scared.
  3. Transfer the benefits of your privilege to those who lack it.
  4. Acknowledge that even though you feel pain, the conversation is not about you.
  5. Be willing to own your mistakes and de-center yourself.
  6. Understand that your education is up to you and no one else
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Get Educated

One of the first steps you can take as a White person to understand why these protests are happening is to get educated. Read about Black history from Black writers, your role as a White person in systemic racism (and how to dismantle it) — and take the initiative to do this work on your own. Here’s a great list to get you started:

  • A Timeline of Events That Led to the 2020 ‘Fed Up’-rising
  • Save the Tears: White Woman’s Guide
  • Reading List: Race, White Supremacy, and Anti-Black Racism in America
  • The Case for Reparations
  • The 1619 Project

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Add Your Voice to a Petition

Petitions are just one tool we have to demand change and accountability from those who enable police brutality. You can find and sign some of the major petitions demanding justice here:

  • Justice for George Floyd
  • Color of Change: #JusticeforBre
  • Black Lives Matter: #DefundThePolice
  • #WeGet Involved With a Racial Justice Organization

Get Involved With a Racial Justice Organization

In addition to nonprofits fighting for justice reform, you can join or donate to other racial justice organizations working to dismantle racism. Here are a few suggestions to get you started:

  • 28 Organizations That Empower Black Communities
  • Showing Up for Racial Justice
  • Know Your Rights Camps

Support Black-Owned Businesses

As businesses are hard-hit by the COVID-19 pandemic, now is a great time to reevaluate where you’re spending your money. In addition to paying attention to a company’s messaging about racial justice, you can directly support Black-owned businesses:

  • We Buy Black
  • The Black Wallet

 Support Justice Reform

Justice reform, from ending police brutality to ending mass incarceration, play a major role in working against anti-Black racism in the United States. Here are just four organizations you can get involved in or donate to:

  • Campaign Zero
  • National Police Accountability Project
  • Prison Policy Initiative
  • The Sentencing Project

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References:

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