Tag: #chronicillness

This Is Your Brain (Fog) On A TV Binge: TV May Not Be The Mental Rest You Thought It Was, But Strategies Can Help You Enjoy Your Show & Protect Your Brain

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I like to sit down for a TV binge to unplug, unwind, and vegetate as much as the next person. But is TV viewing actually a break for your mind?

When I need to take a mental vacation, I often turn to television. Personally, the more mentally fatigued I am, the harder I find it to watch a show or movie with a lot of special effects, complex narratives, or intense action scenes. This is the time for soothing DIY decorating shows, simplistic soapy dramas, or trashy reality TV, in my opinion!

We know that one of the primary symptoms of fibromyalgia is brain fog, which makes concentration and memory problematic, leaving you feeling mixed up, disoriented, or distracted. It stands to reason that mental rest breaks may help people with fibromyalgia reduce their cognitive difficulties. Does TV watching help provide this mental rest?

TV Viewing May Not Be The Mental Vacay You Hoped It Was

It’s true that brain regions responsible for analysis and reasoning, like the neocortex, shut down when we vegetate in front of a TV screen. However, the visual cortex, which processes images, is hyperactive. This contradiction, between a highly stimulated visual cortex that is receiving large amounts of data, and a zonked out neocortex which isn’t able to analyse that information, puts your brain in a state of limbo (Vice). Your brain is not fully engaged, but neither is it resting.

What does mental rest actually mean? Brain breaks allow the mind to process recent incoming information from your senses, to learn, make connections, and store memories. Mental rest can help improve memory retention in healthy people. “Research suggests short periods of rest — as little as ten seconds… can lead to four times the improvement you get from overnight memory consolidation [while you sleep]” (CBC).

Being in a state of mental rest is associated with alpha brain waves, occurs when you feel relaxed, have daydreams, and your mind can wander. However, a recent study demonstrated that TV watching does not induce the alpha waves necessary for mental rest. Instead, TV watching triggers gamma waves in the visual cortex (Research Matters). Gamma waves are linked to visual perception, emotions, and word repetition.

 This doesn’t mean that TV watching isn’t a relaxing way to spend an evening, only that you shouldn’t expect it to improve brain fog or provide mental rest. Instead, boosting alpha waves through activities like listening to calming music, deep breathing, meditation, or guided visualization can give your brain a real break.

Try taking a bit of time in between episodes to rest your eyes and mind, so you don’t overload your visual cortex. Sensory overload is a known energy zapper for people with chronic fatigue.

Does TV Rot Your Brain?

Unfortunately, there is more bad news about the effect of binging TV on long-term cognitive function. Binging for more than three hours per day can lead to greater declines in cognitive focus as you age compared with non-bingers, probably because TV watching is a cognitively passive activity (Live Science). If you’re like me, fibromyalgia has made you an involuntary couch potato, so this study may initially seem like pointless bad news, since there aren’t many other options than watching TV, especially on a flare day.

However, the good news is that cognitively active sedentary activities, like reading, playing board games, or listening to a podcast, are exactly the types of activities that promote brain health as you age. I was happy to discover that listening to audiobooks and podcasts is as beneficial to the brain as reading (Discover)! I’m often unable to read a physical book, due to neck pain or eye-strain, but lying down with my eyes closed and listening is something I can do!

When you need a distraction, try sometimes swapping out watching a TV show with listening to an audiobook chapter or podcast (or radio!) episode may promote your long-term brain health and cognitive function, which should be a priority when you live with an illness linked to cognitive challenges. Intersperse mental breaks that stimulate alpha waves in between your  TV watching or audiobook listening sessions to give your mind a chance to process and store all of that new information.

Can TV Watching Reduce Stress?

But even if watching TV doesn’t allow you to completely switch off your mind, can it reduce stress? After all, it often feels good to binge on a television series, at least while you’re doing it (NBC). The sense of excitement and connection to the social world of the characters on a show stimulates the feel-good brain neurotransmitter dopamine. If you’re looking for a good distraction, prime TV is your go-to. Binge watching is the ultimate form of escapism, and distraction can be very necessary when you feel overwhelmed or are in a lot of pain. Distraction is a valid pain management tool.

If you are in a state of high stress, the best choice of TV show may be a rerun of a favourite series. Studies show that the safe predictability and enjoyable familiarity of a rerun can help you lower your stress level (Verywell Mind). It’s not a coincidence that shows like Friends resurged in popularity during the pandemic! Remember that, to your body, stress is stress, so watching psychological thrillers, horror movies, or even tense reality show competitions, will add to your overall stress burden. Comedies, light-hearted dramas, or predictable get-the-bad guy cop shows are better choices if you are feeling overwhelmed.

Use your judgement to pick the best type of show to match your mental and physical state. Since developing fibromyalgia, I have found myself easily swayed emotionally by the plot of shows or books. I am quite picky about avoiding tragic endings, shows with entire casts of unlikeable characters, disturbing or twisted plot lines, or gratuitous violence. One tip for avoiding these types of shows that never fails is to check whether critics rate a show more highly on Rotten Tomatoes than audiences (which is a virtual guarantee you will get a nihilistic plot and sad ending)!

Setting limits ahead of time on how many episodes you watch in a row, ideally no more than two or three, can help you resist the addictive pull of a cliffhanger episode ending. You may find yourself feeling depleted when a series comes to an end, as the dopamine level falls, and reality reasserts itself. Switch to a comedy, or a few minutes of a favourite re-run in order to boost endorphins and counteract that dopamine crash. I like to think of this as the dessert course.

This post was originally published in the Uk Fibromyalgia Magazine

Athalye, A. (2018). Research Matters: https://researchmatters.in/news/televisions-computer-screens-and-other-such-visual-stimuli-induce-gamma-waves-our-brain-study

Buyting, S. (2021). CBC: https://www.nbcnews.com/better/health/what-happens-your-brain-when-you-binge-watch-tv-series-ncna816991

Neal, M. (n. d). VICE: https://www.vice.com/en/article/3daqaj/is-watching-tv-actually-a-good-way-to-rest-your-brain

Page, D. (2017).NBC: https://www.nbcnews.com/better/health/what-happens-your-brain-when-you-binge-watch-tv-series-ncna816991

Scott, E. (2020). Verywell Mind: https://www.verywellmind.com/the-surprising-benefits-of-re-runs-3144586

Rettner, R. (2021). Live Science: https://www.livescience.com/tv-watching-midlife-brain-health.html

Waiter, J. (2019). Discover Magazine: https://www.discovermagazine.com/mind/audiobooks-or-reading-to-our-brains-it-doesnt-matter

Not Unbothered: How to Navigate Difficult Thoughts And Feelings When They Come Up During this New Year

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Winter is a time for cozy hibernation, while the world sleeps. It’s a natural time for reflection, and to integrate the lessons you’ve learned from the past year, as you evolve into the person you will become next year.

I think we’re always looking for peace of mind, learning how to navigate through the storms of life, to manage significant stress, as well as difficult thoughts and emotions. It’s liberating when you start to accept, heal, and relate in a positive way to your thoughts and feelings. But how do we actually do the work, come to acceptance, process emotions, and grow as people?

Illness can be intense, and even traumatic. Or perhaps you’ve experienced grief, stress, manipulation, childhood issues, relationship problems or family estrangement. The most common two reactions are either to obsessively over-analyze or avoid and deny the emotions. Both of these reactions ultimately leave you stuck, with your emotions festering under the surface. Resisting your feelings only really leads to suffering.

For me, the first step on this journey has been to develop greater self-awareness. Can you name your feelings or write down your thoughts? What do they feel like, and where are they felt as sensations in your body (a fluttery stomach, a tight chest, constricted throat etc.)? Spending a mindful moment with your emotions to get to know them, instead of shoving them back down, really helps you to make wiser decisions. Taking that deep breath before responding during a disagreement stops me from saying something angry, or helps me know when I need to take a break because I’m feeling overwhelmed.

It’s important to let emotions flow through you, but to stay grounded all the while. Emotions are like electric energy in this respect. If you recall a stressful past experience, it’s important not to become flooded by emotions (to torture this metaphor further, you might short circuit if this happens!). The way to stay grounded is to stay connected to the present moment, and to your body. Breathe, scan your heart and stomach for sensations (which can be easier to identify than the feelings), look around, listen to the sounds in your environment.

Remember that emotions are like guests, and you are the host. You are not your feelings, and they are not the truth of you. If you feel sad, guilty, or angry today, this doesn’t mean you are a sad, bad, or angry person. Feelings arise and then pass away, while you stay… you! Keeping this distance from your feelings, separating you-the-host (your awareness) from your emotional ‘guests’, helps give you much-needed perspective.

Stop any runaway trains of thought if you become anxious, by breathing, taking a short walk or stretching, making tea, etc. Responding with acceptance and compassion by taking care of yourself when you experience difficult thoughts or feelings is life changing. Do you treat yourself like a person who is only worthy of love when they don’t make mistakes? Turn that around and you’ll finder greater peace and happiness very quickly. Literally start by just doing for yourself what you would recommend for a sick friend when you feel stressed, think soft blankets, rest, cups of cocoa, and favorite movies. You are entitled to acceptance and love, like all creatures. Tell yourself that.

‘Twitchy Zombie’: An Incomplete List of the Many Varieties of Fibro Fatigue

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Fibro fatigue comes in different flavours. Like a wine taster, you become an expert at distinguishing all of the varieties of fatigue flavours. Who knew there were so many? Today, for example, I’m feeling like I pulled an all-nighter and had 5 shots of espresso. All I want to do is lie down and rest, but my body is practically vibrating, it’s so wired. I call it “Twitchy Zombie” fatigue.

Then there is the “Molasses Wader” fatigue flavour. You know, that feeling when every thought and every action feels like it requires the effort you would need to wade chest-deep in thick, syrupy mollasses? You can only function in slow-mo, but everyone else is zipping along on fast forward. Your brain just can’t keep up.

Other times, your brain slows, your breathing deepens, and you drift off to slee- Not so fast! Pain, like a rope tying your boat to the shore, keeps you tethered to wakefulness. You drift out to the outer reaches of consciousness, but can’t make it to dreamland. Often labelled painsomnia, I think of this as the “Hounds of Hell” fatigue flavour, where you are chained like a dog to your own wakeful pain hell-scape.

Another common fatigue is what I call “Nighttime Ninja.” You wake up and your body aches and you feel like you ran a marathon, then partied all night. Or, are secretly a night ninja. But definitely not like you slept restfully on a soft mattress under a cozy comforter.

What’s your fatigue flavour today?

#Fibro #ChronicPain #NEISvoid

How To Find Meaning Again When Chronic Pain Upends Your Life

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You’re sitting in the doctor’s office, being told you have an incurable illness. Maybe you have to leave your career, or pull back on your workload, with set accommodations. You can’t live up to being the involved wife, parent, sister or daughter you planned on being. Travel become difficult, athletic ability falls off, and favorite hobbies or pastimes become more challenging. But mostly you just don’t feel like you. A period of grief ensues over your previous life, and it crashes over you in waves.

Eventually you start asking the big questions. Can you live a good life despite pain? How do you find meaning again amidst all the change?

I don’t have THE answer, but I did find some answers. Why is something sustaining, nourishing, enjoyable? That’s what I had to ask myself in order to find meaning again. I came back to the saying, “A life well lived is a life fully experienced.”

I was very career focused B.F., finding satisfaction in the field of global health (HIV/AIDS prevention and treatment). Once all that stopped, I felt stuck and lost. The one thing I had been certain of, my “calling”, was gone. Making a difference through my career had given me a sense of purpose.

Before fibro, travelling was one of my favorite activities. Experiencing different cultures and ways of life was important to me because it had made my own worldview expand. Broadening my horizons made me feel vital and alive.

How to replicate that feeling from my couch at home? Can you broaden your horizons from home? Yes! By learning something new. On the traveling theme, free virtual live tours from local guides in English in Heygo are a lovely way to spend an hour. Time that feels spent on rewarding things makes it meaningful.

Learning via podcasts and audiobooks during my enforced rests turn a limitation into an adventure. I’ve found I enjoy learning about history, as a way to travel from my armchair. (I’m  a 🤓). Learning feels like time well spent, whether it’s listening to a historical mystery or an episode of a podcast on ancient Egypt. After all, curiosity keeps your brain healthy and young. What do you geek out about? It can be anything, from an academic subject, to a hobby, to DIY project techniques. Intentionally find ways to learn about things you find interesting, from online classes, podcasts, audiobooks, or just connecting with interesting people online and asking them questions.

Over time I came to see that there is a lot of life to live here, in ordinary life, without globetrotting or being career driven, which is what I believed at 20. But in learning to be mindful and still, I’ve found how much I missed before in my search for New Experiences, and how much being present enriches my life. Being on autopilot, or always looking ahead, meant I whizzed past sunsets, birdsong, long hugs, savoured meals, belly laughs and so many other moments. Connecting to the beauty and wonder all around us via our senses is possible, even while in pain, even at home. Finding ways to feel that makes life more worthwhile. Mindfulness as a practice, or just realizing the need to be present, means showing up for moments big, and small. Choose to stay with an experience instead of reaching for a distraction.

And the difficult experiences of chronic pain, surviving the limitations, still mean that you are living fully. I’ve grown in strength, resilience, compassion, self confidence and patience in ways I never would have before my illness. After all, what else really is the point of life other than to become a better, wiser version of ourselves on this journey? This is another way to have a purpose in life. I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one.

I’ve written before about the critical importance to our happiness of self expression and contributing to something greater than ourselves. We are often taught that the only way to do this is to work and be a “productive citizen.” However, there are so many other ways to find connection, such as sharing your story and finding online relationships, to learn from and support others. Writing on my blog and now writing as a freelancer, has transformed my life. Supporting others online, teaching, mentoring, and sharing your experience are all ways to contribute, big and small.

Fiction writing has engaged me again in a new way through imagination. (I’m writing a historical mystery set in Niagara Falls during the American civil war, when the area was a hotbed of spies and intrigue). Creativity can be a form of salvation, as a craft, an art, music, interior decoration, in the kitchen, the garden, on the page, or anywhere else. We shift into an active mode, not passive mode when creating. Yet we also refrain from intellectualizing, analyzing, number crunching or any other left brain thinking. Creativity is about engaging intuitively, emotionally, and symbolically with the world, through self expression, using the right brain. It’s good for your heart; it’s good for your soul. Don’t disparage it as “unproductive” or unimportant, because it is a meaningful source of intrinsic pleasure. It’s meaningful because it’s a way of being open and engaging with the world around you (sensing a theme yet?), via your senses and interpretations, from your own unique perspective.

We find meaning in our relationships, in our faith and in our philosophies. But we have to be present, open and engaged to really benefit from these resources. That doesn’t happen overnight! But tuning in to our senses, our inner strengths, our creativity, our intrinsic interests and sources of pleasure allows us to connect to the world in ways that create and cultivate meaning in our lives. This is a form of strengths based healing – leveraging your inner resources to create a life fully experienced, and well lived – in spite of adversity.

Managing Social Media Before it Manages You: Digital Wellness for Chronic Illness in the Time of Covid-19

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Managing Social Media Before it Manages You: Digital Wellness for Chronic Illness in the Time of Covid-19

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.

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).

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.

Unfortunately, 2020  seem to be victim to the Chinese proverbial curse: "May you live in interesting times."

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.

 

Making This Blog Anti-Racist: Understanding Illness, White Privilege and Racism

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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.

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:

  • “ 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

> Additionally, from The Mighty, here are 11 Ways to Support Black Lives if You Can’t Go to A Protest:

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:

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:

 

 

 

 

 

 

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:

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:

 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:

Say It Out Loud: Black, Chronically Ill, Disabled Lives Matter

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Copy of Collective Chronic Wisdon (1)

When I started this blog, the purpose was to share my illness journey. As a reader of  chronic illness blogs and social media accounts, I had found my own experiences validated and understood, and I wanted to pay that forward to others. I hope that readers here feel encouraged and supported to better navigate the challenges of living with illness, perhaps through finding a new perspective, or a practical strategy in one of my posts. I strive to balance a realistic look at the difficulties we face with the hope that it is possible to find greater wellbeing despite illness. But if I want everyone who finds their way here to feel that way, I have to be explicit about equality: Black lives matter. Indigenous lives matter. The lives of people of colour matter.

As a patient advocate, 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. And my silence is a message. Because, to not say anything when people are literally screaming for their lives is to say a lot.

On top of ableism and sexism, black women with illness face racism (women of colour, and indigenous women do too). This impacts their medical treatment:

“This study provides evidence that false beliefs about biological differences between blacks and whites continue to shape the way we perceive and treat black people—they are associated with racial disparities in pain assessment and treatment recommendations. Black Americans are systematically undertreated for pain relative to white Americans (Hoffman, 2016).”

In fact, the stress of experiencing racism can predispose black women to chronic disease. Professor Amani Allen at UC Berkeley says:

“Racial discrimination has many faces. It is not being able to hail a cab, getting poor service in stores and restaurants, being treated unfairly at work, being treated unfairly by police and law enforcement and being followed around in stores because of racial stereotypes. 

We found that experiencing racial discrimination repeatedly can create a state of biological imbalance that leaves certain groups of people more susceptible to chronic disease (Berkely News, 2016).”

I realize that I have to do better and ensure I include racism when I write about the barriers and challenges of accessing treatment and fully participating in society, otherwise I erase the experiences of black women as well as all women of colour who live with illness. I have to unlearn my own internalized racism and privilege.

At the end of the day, it’s more important to hear the words of women who are black, indigenous, and of colour than to hear my words on the subject. I’d like to point you to just a few of the many black bloggers and social media influencers you should follow who share their journeys living with illness and disability:

> @MsMoReal (Twitter) Free Spirit. Blogger. Lover of slurpees, trap music + the color orange. I have #myastheniagravis so I blog about that. #MGwarrior #spoonie #chronicillness  Blog is at ‘Is Was Will Be’ 

>@Imani_Barbarin (Twitter) she/her Black girl magic+disabled pride |MA Global Comms | my thoughts | #DisTheOscars + #AbledsAreWeird #ThingsDisabledPeopleKnow Blogs at Crutches and Spice 

>@ohheyteigh  (Twitter) who is the creator of @BlackDisability  and the Black Disability Collective on Facebook. @mnwfpc sweetheart #BlackDisabledLivesMatter

>@DawnMGibson  (Twitter) Founder of #BlerdChat + #SpoonieChat, #Paleo #GlutenFree #FoodSafety #Spondylitis #Arthritis

>@Tinu (Twitter) Founder #EverywhereAccessible. Black. Disabled. Writer. @HotMommasProj Fellow. #MySpoons #ChronicPain #cancer Typos? #BrainFog!

>@Keah_Maria  (Twitter) Writer/Author.Bi Icon. l created #disabledandcute

>@breenikki  (Twitter) Writer. Married. Mama. Believer. Beatface. Teacher. AutoImmune + Chronic Illness + Chronic Pain. A taker of Polonius’ advice to Laertes. Blogs at Cynical Ingenue

In addition, here are 9 Powerful Black Female Voices to follow who are educators, speakers, and activists that are facilitating important discussions on anti-racism, diversity, and inclusion to motivate people to change their beliefs and address issues of race and racism to resist and dismantle oppression.

Sources: 

Hoffman Kelly et al. Proc Natl Acad Sci U S A. 2016 Apr 19; 113(16): 4296–4301.

Berkely News (2018) https://news.berkeley.edu/2018/10/05/racial-discrimination-linked-to-higher-risk-of-chronic-illness-in-african-american-women/

 

Getting the Picture Across: Improve How You Talk About, and Think About, Chronic Pain Using Insights From Art Therapy

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Talking pain is hard (a number out of 10 doesn’t really say much!) Learn how to harness the power of images to communicate about your pain more effectively, to reduce pain through visualization strategies, and to express yourself emotionally and intuitively about the experience of living with pain using art therapy insights.

Getting the Picture Across: Let's Talk About How We Talk (and Think) About Chronic Pain

It‘s almost funny that the single word pain is supposed to mean all of the different sensations you feel when you live with a chronic pain condition. The numbering system out of 10 doesn’t capture chronic pain very well. Are we adding all the pains up and finding an average, or talking about one painful area at a time?. Beyond the intensity of pain, what about the quality of the pain? Often, I find it hard to describe in words how different ‘pains’ physically feel, especially to someone who does not have chronic pain. Sometimes a metaphorical image captures it best.

Images can elicit a very physical response, bypassing the analytical parts of your brain. If I describe the sensation of a dentist drill, whirring away, drilling a hole deep into my spinal column, how do you feel? In contrast, imagine I describe being in a forest, with sunshine streaming through the leaves and dappling the forest floor – do you feel more relaxed? That’s the power of our imagination to affect thoughts and feelings.

Visual Metaphors Can Improve Communication By Evoking Empathy Mirror Neurons

Visual metaphors are better able to evoke understanding and empathy in others than other means of communicating (G. D. Schott). If I tell you about a large needle being slowly inserted into my eyeball, your reaction is likely to cringe, grimace and/or squint your eyes.

When you hear someone describe an image of something happening to them, your brain will “mirror” that experience – you imagine what it would literally feel like for the same thing to happen to you. In fact, we have neural pathways, called mirror neurons, devoted to empathizing with other people this way: “both mirror neuron and alternative neural networks are likely to be enlisted in the empathetic response to images of pain” (G. D. Schott). Using visual metaphors can help you to describe your pain better to your doctors and your family and friends. Here are some common images and metaphors for chronic pain to consider using.

Nerve pain brings to mind intensity, heat and electricity. My sciatic pain can feel like a zap of electricity – a sudden, searing, mini-bolt of lightning. Pain is often compared to a burning or searing fire. Describing a sharp stabbing feeling, like a hot knife, can really help to get the picture of how your pain feels across.

Muscle pain might be best described as a tool-kit wielded by a sadistic handyman. The drilling in my head referred from spasmed neck muscles, the throbbing ache in my SI joint like a hammer pounding down on the spot. It’s also common to describe pain as a tormenting animal, clawing, tugging or squeezing the painful area of the body.

Deep, internal pain can feel like the pressure of a bowling ball, or worse, an anvil, suddenly teleported pressing down on the painful area. Some tools from the sadist’s toolkit might join the party, like pliers pinching or an ache that feels like a vice grip being tightened.

Take a deep breath after reading those descriptions. They can be stressful to contemplate, because it may bring to mind all the different pains you feel at once, and/or activate your mirror neurons so that you’re imagining many types of pain at once. Luckily, the power of visualization can be used not just to describe pain, but to reduce it as well.

Use The Power Of Your Imagination To Manage Your Pain

Visualizing can be a potent way to ease pain and shift attention. Imagining a soothing, or more positive mental picture can significantly lower levels of the stress hormone cortisol. When you enter a relaxed state, your brain releases endorphins, which are natural pain-relieving biochemicals. Using your imagination is a helpful way to distract from focusing on pain, which is likely another reason that visualization can help to manage pain. Numerous studies have demonstrated that guided imagery reduces pain and improve physical function.

Guided imagery often involves visualizing tranquil natural settings, like walking on the beach or in a garden. The visualization should incorporate all of your sense. For example, a beach visualization would include the mental image of a beach, but also the sound of the surf and the cry of seagulls, the smell of salt air, the feeling of sand under your feet – you get the idea. There are many websites, CDs and apps that provide sessions you can listen to if you’re interested in using this technique.

Another technique involves reframing your original visual pain metaphor or replacing it with a pain reduction visual metaphor. For example, if you feel like your pain sensation is like being pricked by hot needle, then you reframe visual to be a cold needle. After concentrating on that, you can imagine the needle itself becoming soft, like a string of spaghetti.

Guided visualization to soothe pain involves minimizing, distancing or numbing the pain sensation. You can imagine the warm oil being poured over tight muscles, for example, or ice freezing out burning sensations. The secret to success with any visualization technique is practice and repetition – it becomes more effective the more you do it.

A Picture Is Worth 1000 Words: Express Yourself Using Art Therapy

Envisioning pain can also go past physical sensations into describing how the pain impacts your life. If I was going to draw a picture of my fibromyalgia, it would be like a cage. I often feel trapped within limitations of what I’m able to do for the pain flares and I have to stop. Chronic pain can feel like an alarm that is always blaring – like trying to work through a fire drill. I would probably use colours like red and orange or grey and black to describe The ‘feel’ of pain.

Not surprisingly, exercises that get you to draw your pain/health condition are also helpful to relieve stress. “Expressing oneself through [art] makes our thoughts, feelings and ideas tangible and communicates what we sometimes cannot see through words alone” (Psychology Today). Creative expression is quite healing, even if it’s limited to abstract doodles or colourings. Drawings and collages can also picture positive images that evoke well-being.

What is a visual metaphor for your pain? If you had to draw an image of your chronic pain condition, what would it look like?

Resources

Psychology Today (Picture Of Health: An Art Therapy Guide) https://www.psychologytoday.com/ca/blog/arts-and-health/201703/drawing-picture-health-art-therapy-guide

Arthritis (Guided Imagery For Arthritis) https://www.arthritis.org/health-wellness/treatment/complementary-therapies/natural-therapies/guided-imagery-for-arthritis-pain

Calgary Neuropathy Association (Visualization And Pain Management For Neuropathy) https://calgaryneuropathy.com/visualization-pain-management/

Brain (G. D. Schott: Pictures Of Pain And Their Contribution To The Neuroscience Of Empathy) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408436/

Empowering People Living With Chronic Pain Through Pain-Neuroscience Education

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I’m excited to share a guest post by Ann-Marie D’Arcy-Sharpe, a freelance writer and blogger who lives with chronic pain. She writes for Pathways Pain Relief, a chronic pain relief app and blog, which is created by pain patients and backed by the latest pain science. I definitely learned a new thing or two by reading her article, so I hope you do too! 

Empowering People Living With Chronic Pain Through Pain-Neuroscience Education

Chronic pain affects a vast proportion of the population. A 2019 study from the Journal of Pain states that, “Chronic musculoskeletal pain (CMP) affects about 20% of the population in western countries, causing suffering, disability, and a significant loss of quality of life”. Not only does chronic pain affect many people’s lives, it also takes up a great deal of health resources and accounts for many people being out of work. 

For a long time, those with chronic pain have received little in the way of effective treatment options. Thankfully, the face of modern day pain treatment is changing. Pain-neuroscience education (PNE) has become a cornerstone of chronic pain treatment. Understanding the science of chronic pain can be a powerful tool to empower people in pain to retrain their brain away from pain. Having people living with chronic pain understand that the brain produces all pain, and that it’s neuroplastic, helps to instil the confidence that pain is changeable.

PNE is often part of chronic pain treatments such as physiotherapy, cognitive behavioural therapy (CBT)  and other psychological treatments. This form of education teaches those in pain about the science of acute and chronic pain, so they can have a clearer understanding of pain moving forward. Often metaphors and stories are used to help people in chronic pain relate the science to their own lives and provide a deeper understanding. 

This study explains that PNE, “incorporates the multidimensionality of a pain experience and helps patients reconceptualise pain through understanding the multiple neurophysiological, neurobiological, sociological and physical components that may be involved in their individual pain experience.”

At Pathways (our pain therapy app), we found the best results by starting our program with PNE. Those in pain often tell us that understanding the science behind their pain was key to their recovery. Understanding that pain doesn’t equal damage, and that our brain and body learns pain, helped them to change their perspective on pain, as well as strategies to deal with it.

A 2019 study on PNE states that, “The use of pain neuroscience education (PNE) has been shown to be effective in reducing pain, improving function and lowering fear and catastrophization.”

The way those living with chronic perceive pain has a significant impact on pain levels. This study clearly states that, “Pain is complex and it is well established that various cognitions and beliefs impact a patient’s overall pain experience”. 

Giving people living with pain hope and the ability to see why and how treatments work can lead to more positive, adaptive perceptions of pain and the pain experience. This in turn reduces symptoms and encourages more adaptive coping strategies. People are far more likely to really engage in their treatment when they have this basis of understanding to work from.

Often people in pain experience deconditioning from lack of activity. This can contribute to pain levels and make daily activities harder. With more positive perceptions of their pain and the understanding that engaging in activity is not going to harm them, people can start to recondition their bodies. As muscles become stronger and the body becomes fitter, pain is reduced. 

Once fear is tackled with knowledge, the stress that accompanies chronic pain can be reduced. This in turn helps to break the stress and pain cycle. Since stress worsens chronic pain, this is actively helping to reduce symptoms and enabling patients to feel more in control of their lives. 

Through PNE people in pain are made aware of the difference between maladaptive and adaptive coping strategies and learn that their behaviours directly influence their symptoms. They can come to understand the need to implement more adaptive behaviours and can feel more motivated to do so. Given that so many people with chronic pain feel powerless, understanding that they have more control over their pain levels than they may have thought can be incredibly liberating.

Giving people a sense of hope that their symptoms can improve is a vital and significant part of pain treatment. It’s so important that PNE is part of pain treatment moving forward to set people living with chronic pain up for success! When there are effective treatments available, nobody should be left in chronic pain without hope. 

References

Galán-Martín, M.A., Montero-Cuadrado, F., Lluch-Girbes, E. et al. Pain neuroscience education and physical exercise for patients with chronic spinal pain in primary healthcare: a randomised trial protocol. BMC Musculoskelet Disord 20, 505 (2019). https://doi.org/10.1186/s12891-019-2889-1

 

Louw, A., Puentedura, E. J., Diener, I., Zimney, K. J., & Cox, T. (2019). Pain neuroscience education: Which pain neuroscience education metaphor worked best?. The South African journal of physiotherapy, 75(1), 1329. https://doi.org/10.4102/sajp.v75i1.1329

 

Adriaan Louw & Emilio J Puentedura, (2014), Therapeutic Neuroscience Education, Pain, Physiotherapy and the Pain Neuromatrix. International Journal of Health Sciences, September 2014, Vol. 2, No. 3, pp. 33-45. DOI: 10.15640/ijhs.v2n3a4

Bio: I’m Ann-Marie D’Arcy-Sharpe. I am 33 years old and work as a freelance writer and blogger. I live with bipolar disorder, fibromyalgia and arthritis.

I write for Pathways Pain Relief, a chronic pain relief app and blog. The app is created by pain patients and backed by the latest pain science. We use mind body therapies to help pain patients achieve natural, long lasting pain relief.

You can download our app here: https://www.pathways.health/

 

Strength of Surviving: The Importance of Acknowledging Your Own Strength in the Face of Chronic Illness Adversity

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Getting through adversity with endurance and determination is a trademark characteristic of every single person living with chronic illness. This is the strength of survivors. The coronavirus pandemic especially hard on those of us who are sick already but I hold on to the fact each of us is stronger and more resilient than we give our selves credit for, and these inner resources will help carry us through this time.But to acknowledge you own strength, you have to know what it really means. Think about it… what does it actually mean to be strong?

What is strength?

Strength is often described in terms of a fight for control – pictured as a physically tough warrior doing battle against the forces of opposition (Kabat-Zinn). In terms of life with chronic illness, being a fighting warrior can mean advocating for better care from your doctors or standing up for yourself to maintain boundaries in a challenging relationship. “I have the inner strength to fight for what I need.” But this metaphor is relatively limited in how it lets us conceptualize our own strength.Strength can also be understood as having the internal resources to cope in difficult situations. A strong person might be described as having the capacity to exercise physical, mental or moral power in challenging circumstances. You might have a strong mind, a strong support network, strong principles, or strong abilities that help you navigate through life experiences. Learning to cultivate and rely on these resources is an aspect of strength that I would call resilience, and it’s an important part of living a better life with chronic illness.Finally, and I think most importantly for individuals with illness, strength is about endurance, tenacity and perseverance – think of the phrase “a pillar of strength”. This is the strength of survivors. Getting through adversity with endurance and determination is a trademark characteristic of every single person living with chronic illness. I love the phrase “remember, your success rate for surviving your worst days so far is 100%”.Jon Kabat-Zinn, a pioneer of mindfulness in medicine, created a meditation based on the visual metaphor of a mountain to help patients in his programs learn how to adopt a mountain’s qualities of strength, stillness and stability as their own. I would include an additional symbol – a tree –which offers additional insights on how we can understand strength as adaptability in a way that helps us cope with chronic illness. What can the metaphors of a mountain and a tree can teach us about the strength of survivors? How can we come to know our own grounded presence, our ability to encounter both good and bad experiences one day at a time, and our own will to survive, uplifted from deep within?

Being Grounded

The base of a mountain is embedded in the Earth’s crust, and the deepest roots of a tree ground it in the soil. In the same way, we can anchor ourselves in the present moment, and root our attention in the here-and-now. This is what it means to be “grounded in awareness”, which is a stable foundation for living that can be very reassuring in the face of overwhelming circumstances.Growing deep roots in the firmament of awareness is a source of great inner strength. If we stay mindfully connected to the present, then we don’t get swept away by memories, imaginings, and other mental or emotional preoccupations. Whenever grief over losses caused by illness arises – or frustration about physical limitations, or anger over inadequate health care – staying grounded in the present, even as you feel your feelings, provides stability, continuity and reliability. You can always count on just this breath, moment to moment, to anchor you. It is sustaining and nourishing for our well-being to be grounded in the present in this way – just like it is nourishing for a tree when its roots absorb water and nutrients from the surrounding soil.Meditation instructors often liken thoughts, feelings, and experiences to the weather. How would you describe the forecast in your own life today? Sunshine and blue sky (happy), overcast (low mood), partly cloudy with sunny breaks (neutral), storm clouds with thunder and lightning (anger), blizzard conditions (turmoil) – using the emotions-as-weather metaphor is a wonderful way to check in with yourself to identify how you’re doing throughout the day. Jon Kabat-Zinn explains that the mountain experiences these conditions on its surface – but underneath, the solid base sits in unwavering stillness. In the same way, beneath the thoughts, emotions and experiences of our daily lives, is the foundation of unwavering stillness that is our awareness. If we can learn to sit mindfully, grounded in the same resolve and endurance as a mountain, no matter what the conditions on the surface landscape of our daily lives might be, we can adopt its strength as our strength.

Being Mode: Equanimity as Strength

A mountain is the quintessential symbol of endurance. The mountain rests in “being mode”– a calm, abiding presence withstanding the inevitability of change over time. A mountain knows at its core, of each experience, that “this too shall pass”. The mountain represents equanimity.Everyday life with illness is extremely unpredictable. Chronic illness exemplifies the saying “man plans, and God laughs.” Physical symptoms constantly fluctuate, which makes planning very difficult. Over time, forced periods of inactivity and rest due to flare-ups make it difficult to continue persevering at things – from friendships, to jobs, or projects. The stop-and-go nature of life with sickness makes it hard to accomplish things or to cultivate relationships, and the constant sense of uncertainty causes a pervasive feeling of powerlessness.The natural reaction to these changeable circumstances is to double down on “doing mode”. For example, you might stay up all night researching your illness, create a 40 item treatment plan, or drive yourself to “push through” tasks regardless of pain or exhaustion, in order to be more productive. “Pushing through” does require strength, but it is the fighting, warrior-type of strength we discussed earlier. This works in short bursts, and can sometimes be necessary, such as pushing through physical discomfort to attend a meaningful family event or to advocate for yourself with a dismissive doctor.But like clenching a handful of sand in a closed fist, these tactics don’t help you hold on to predictability or productivity for very long. We can needlessly expend our limited energy in a constant, exhausting battle to regain control of our day. But, as you likely know all too well, pushing through today usually only leads to a crash tomorrow. What might happen if we switched to approaching life’s challenges using the endurance and tenacity of “being mode” rather than engaging in the battle of “doing mode”?We can use the symbol of the mountain to represent what embodying equanimity as an inner strength could look like. When difficult experiences, thoughts or emotions arise, rather than always seeking to analyze and control these circumstances, we can rely on our inner awareness as a solid foundation – building on the enduring resolve and unwavering stillness of mindful presence to persevere through the storms of life. Releasing the need to control our life circumstances can feel like an enormous weight lifted from our shoulders. Instead, we allow circumstances to be like the weather on the mountain – ever-changing – even while the mountain endures as a still, rock-solid presence. In this way, cultivating equanimity allows us to build inner strength.

Strength in Flexibility

Like a tree, you have shown determination to survive, no matter how challenging the environment has been. You have endured, one day at a time. This inner strength comes from your core, which supports you like the trunk supports a tree.The tree has a powerful lesson about strength to teach us – because it is both strong and flexible. The trunk stands firm, yet the branches bend in the wind. If the wood of trees was unyielding, all trees would be brittle and snap in stormy weather. In fact, the trees that have adapted to survive hurricanes are the most flexible of all – picture a palm tree bending to withstand the onslaught of Category 5 hurricane strength winds one day – and then standing serenely under a tropical sun the next. Flexibility, and adaptability, in the face of adversity, increases resilience. No matter whether we face sunny days or storms, the tree teaches us to stay grounded in the present, to hold ourselves upright using our inner strength, and to be flexible in the face of the winds of change.

When I realized all of the strength I needed was already inside me, it changed how I approached the challenges of illness. Of course I feel anxious and worried; the feelings don’t disappear. But reminding myself to stop, breathe, and plant my feet in the present gives me hope that there is a path through whatever difficulties I face. I can deal with just.right.now. The stillness and stability of just being, of our awareness of each moment, is always there to count on, to ground yourself in. Endurance is made up of perseverance in moments, and days. I’ve gotten through every difficult minute, hour, day, and season I’ve ever faced, and so have you. I don’t know what the future holds, and I try to stay open to change. But I have an approach and a way to navigate what comes, and that is the strength of surviving. I know that now, and it makes all the difference.

to cope with You can find the mountain meditation in any Mindfulness Based Stress Reduction program, which is taught all over the world, in the book “Wherever You Go There You Are” by Jon Kabat-Zinn, or on the free, non-commercial site http://www.freemindfulness.org/download, under ‘Guided Imagery’.