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

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

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

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

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

Its 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

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

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’.

Fear and Hope: The Hidden Realities of Being Chronically Ill In the Time of Coronavirus

 

Right now is especially hard on those of us who are sick already. The safety nets that each person has – medical care, social support, financial security, and access to basic necessities, among others – are being sorely tested at this time. But the individual safety nets of people with chronic illness are already weakened, and when you add a pandemic, they fray even more. We have to hope and pray that they hold.

Spring. It’s a beginning. More than that, it’s a beginning that starts in the cold and the dark. In the middle of winter, it’s hard to believe spring will come. But it does. I’ve taken photos of spring flowers to remind myself of that fact.  I hold on to the fact that the deep resilience and strength that everyone with a chronic illness has developed will help to get us through this time.

Physically, the risk of getting coronavirus has higher stakes for the chronically ill. Even if you are not immunocompromised, the fear of getting a terrible illness flare up, or setback is real. A cold virus once caused me debilitating fatigue for months, so of course I worry what coronavirus could do. My husband worries even more on my behalf than I do!

The financial crisis ahead will disproportionately hurt the chronically ill, who are far more likely to be underemployed or unemployed than the non-ill. I feel lucky my husband’s salary can support both of us, since I can’t work, although things in a single income family are often tight. But for years, many of those with chronic illness have lived in poverty on inadequate government disability assistance. Suddenly, the government has found the resources to give individuals who have just lost been laid off because of covid-19 as much as double the amount allocated for disability benefits. 

To be clear, I don’t begrudge anyone who has recently gotten emergency government financial assistance due to coronavirus. That’s the right thing for our governments to do, and in fact, they should give more than they are. But when the chronically ill and disabled get half as much on a regular basis – an amount that is below the poverty line- it feels like our governments are saying people like us are worth half as much. Meanwhile, many are still trying to get by on the inadequate amount given as disability assistance during the lockdown without any additional supplementation. 

We’re still living in an ableist world  in the time of coronavirus. There’s no way that I can stand in line for half an hour or longer to buy groceries or pick up prescription refills on my bad knee. But God help you if you want schedule grocery delivery. There are no times available, for love or money. My husband is able to try and shop around his work schedule, and I’m lucky to have that help, when others are on their own. In some cases, neighbours and strangers have stepped up to help out the chronically ill who iive alone, and that increases my faith in humanity a little bit more.

Like so many, all of my appointments and procedures have been cancelled. From monthly physiotherapy that helps to bring down regular flare ups, to a long scheduled nerve ablation that is supposed to reduce my neuropathic back pain, all of these pain management tools are now on hold and I’m trying to make do the best I can.

I won’t lie, it has been harder to sleep, which triggers more flares of pain. I feel more irritable, especially if I spend too much time on the news or social media. Regulating my news diet helps to bring some of the stress down. It’s just not feasible to try to worry about every corner of the world at once!

At the moment, it seems like everyone and their grandmother are having Zoom chats with all the people they’ve ever known. If I read one more post about how wonderful all this reconnecting is I think I will get an eye twitch.

Chronic illness is isolating for most of us. When you cannot regularly meet up with friends or join community events or chit chat with neighbours at the dog park, then your social support system shrinks. I’m fortunate to have a couple of good, old friends who have stuck with me. And since I’m old school, I skype with them on occasion (sorry, zoom!).

But I’ve lost a lot of friends and family members along the way. It’s hard to think about the people who were more fair weather friends at a time like this when we could have been there for each other.

That being said, I’ve learned to embrace solitude more over the years. This is the time for distraction therapy: writing, knitting, painting or whatever creative pursuits you have wanted to try. Or maybe just appreciate the creativity of authors, actors and musicians by reading, watching shows and listening to music that you’ve wanted to check out but haven’t had time until now. Here’s a list of my favourite free distractions to help you make the most of this time, despite the pain and fatigue.

Frustratingly, I had just started going to a local library book club before the pandemic hit and had found a new local fibro group I was hoping to go to. Looking forward to book club got me through some difficult days- thinking, “well, at least I’m living a little”. Same with going out to a cafe once in awhile with an audiobook, ted talk or an online course lecture. Those small things helped me to regulate my feelings about chronic pain- counterweights of connection and enjoyment to the isolation and limitations of illness.

Now though, that’s not possible, or re-creatable. When bad days hit now, it’s hard to know what to turn to other than a lot of distraction. Fortunately, there are some excellent online support groups, like Medical Musings for Friends on Facebook, or the general chatter of #chroniclife #spoonie #chronicpain #fibromyalgia on Twitter.

I hold on to the hope that this season will pass and a new spring will bloom, when we will be able to access the treatments and supports we need again, and build the relationships we want. Now more than ever, I value the strength I’ve gained, my current relationships (IRL and virtual), and mindfulness of simple enjoyments, like spring flowers, that I can savour. I hope I can carry the intention to focus on these things into the next season, post-coronavirus. We have strength forged by surviving our illnesses, and we can trust in our own tenacity and resilience during this time. Self-compassion and kindness can also go a long way right now. We need to give ourselves a break at present, since we’re all just muddling along trying to figure this thing out the best we can, one day  at a time.

 

Coping With Uncertainty: Going Where the Flow of Your Chronic Illness Takes You

Unfortunately, illness takes away much of our control over our own lives. But there is a blueprint for coping with life’s fundamental unpredictability. Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms.

Coping With Uncertainty:

Spring lends itself to new beginnings, from planning spring cleaning, to starting up projects, to contemplating healthier choices.

When you live with chronic pain, it’s easy to decide on a new initiative, but difficult to actually accomplish it. The unpredictable and overwhelming nature of fibromyalgia and chronic illness symptoms mean that completing something isn’t only a matter of motivation and effort. Unfortunately, illness takes away much of our control over our own lives. This leads to feeling powerless, which is hard to live with. You have to go with the flow of your illness, wherever it takes you.

It can help to take the long view on the uncertainty of life. As they say, “humans plan, and God laughs.” All people have to contend with the fact that they cannot control the future. This truth may be more visible in the lives of people with chronic illness, but it applies to everyone. Striving and straining to attain the impossible — control of the future– can be an exhausting and defeating waste of mental and emotional effort.

I recently developed a mysterious knee pain, and my knee becomes red and swollen sometimes. This has significantly limited my ability to walk and drive, and do basic daily  activities. While I wait on multiple referrals to specialists, I have to live without knowing whether I will I have to permanently live with this new disability. Unknowns like this are scary, and naturally produce worry and anxiety. At times like this, I come back to the Serenity Prayer: “grant me the serenity to accept the things I cannot change, the courage to change the things I can , and the wisdom to know the difference.” Beyond containing a universal truth, I think that this prayer offers a blueprint for coping with life’s fundamental unpredictability.

During a period of heightened uncertainty, it’s useful to mentally review the worries that arise, and divide them into two categories: things you can change, and things you can’t control. For the first category, put the analytical, problem-solving part of your brain to work coming up with strategies and  to-do lists. In the case of my knee, that has included day-to-day coping strategies to make myself more comfortable. For example, I bought a chair for the shower to make washing easier.  I looked up ways to make at-home ice packs using water and rubbing alcohol in Ziploc bags so that I can ice my leg frequently to keep the swelling down. I’ve been keeping careful track of my daily steps so that I don’t go beyond what I can handle. While these proactive steps don’t address the fundamental question about what will happen in the future, they do make me feel more in control of the present. It isn’t easy to do something that makes me feel more disabled than a month ago, like sitting in the shower, but I’m doing what I can, and that feels much better than doing nothing.

So what about the second category — the things we cannot change? Sometimes the simple act of acknowledging  that there are things beyond our control can be a relief. When worry and apprehension take over your mental attention, they’re often based on the assumption that you have the ability to change external circumstances. Setting that burden down can be freeing. Of course this doesn’t mean that you stop caring about outcomes. It’s a fallacy to say that choosing to live in the present without always being preoccupied by future worries means that you don’t care about what will happen.

Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms. My Grandmother used to say that “we’ll cross that bridge when we get there.” The older I get, the more I realize the wisdom of that saying. As mindfulness practitioners like to remind us, we only ever live in the present moment, not in the future, or the past. The visual of a mountain, sitting still and unmoveable in the face of all weather and seasons, is sometimes used in meditation because it captures the spirit of being grounded in the present. There are different practices that can help us to cultivate equanimity in the face of uncertainty, such as mindfulness, cognitive behavioural therapy, or prayer. The gist of these comes down to being self-aware about what we mentally focus on, and deciding whether the issue is something we can change or something we cannot control. We need to do what we can to address the things within our power, and let go or surrender what we cannot (over and over again, sometimes). In the long-term, I don’t know what will happen regarding my knee. Right now, I think I will go get another ice-pack and start thinking about what to make for dinner.

Coping With Uncertainty twitter

Forget Picture Perfect: How Photography is Teaching Me Perspective on Grief, Stress & Illness

I haven’t posted in awhile because I’ve been coping with some health issues that, well, I’m not ready put pen to paper and write about yet. It’s reminded me that grief over illness loss comes in waves, and isn’t limited to the onset of a condition. Body breakdowns fluctuate over the course of an illness. And limitations affect you differently at different stages of your life. In my 20s it was career and in my 30s it’s been more about family.

I’ve been trying to find those small, good moments and really appreciating them, whether they’re beautiful, or joyful, or hilarious, or super interesting. Not perfect moments. Waiting for those would be like waiting for pigs to fly. I’ve noticed that when something good is happening, I worry that it will be hijacked by…pain, fatigue, stress, GI issues (etc.,etc.,etc.) I’m constantly vigilant, waiting for another flare-up to make me cancel my plans or a painsomnia night to make me scrap my daily to-dos. Those may not sound like very serious problems to someone without a chronic illness. But never being able to accomplish anything makes you doubt your self-worth, especially in our productivity oriented culture. Disappointing the people you care about most threatens your greatest vulnerability, which is losing your community– losing love.

But hyper-focusing on what is bad won’t protect me from a flare or another illness-related loss. But it might prevent me from truly enjoying what is good, like getting a big hug from my husband when he comes home from work, or seeing a butterfly landing on a purple coneflower inches away from me.

I was missing out on those things because my mind was always probing each situation for how it could go wrong. Of course my brain was only trying to protect me, but it wasn’t making me any happier…or safer. I started photographing flowers on my daily walks as a way to stay mindfully present in the moment. (A very literal interpretation of the proverb to ‘stop and smell the roses’! Sorry, couldn’t resist). Each blossom feels like one counter-weight against whatever is bad or negative that day.

Once I started really looking I saw an abundance of opportunities to appreciate simple pleasures. And trust me, I’m still hurting over my losses. This is not me preaching that ‘thinking positive’ will make life all sunshine and rainbows. In fact, I started seeing a therapist earlier in the summer because I wasn’t coping well with recent losses. It felt like my illness were determined to take away every dream I’d ever had for myself. Not just ‘felt like’- my illnesses have taken away the possibility of fulfilling my old dreams. That is still heartbreaking.

But it doesn’t mean that nature isn’t still beautiful. It is. Sharing love still feels so good. Eating a great meal or laughing till I cry still makes my day. And discounting those moments because they aren’t perfect or are side by side with sad or difficult moments just gives more power to my illness, and just allows it to rob me of more of my life. But I won’t let that happen anymore.

Meditation has taught me how to concentrate on one thing, like breathing, while distractions go on around me, like sounds or random thoughts arising. Learning how to gain control over what I pay attention to has been life changing. Like a spotlight, I’m gradually getting better at focusing on good moments and putting them center-stage, while leaving the bad, like pain or worry, in the wings. It’s a skill, not a a one-time epiphany.

Photographing flowers has helped me keep perspective on my illness-related, by keeping the good as well as the bad in the frame. My therapist explained that being on a hair-trigger, ready to activate the fight-or-flight stress response adrenaline rush, or alternately, shut-down and numb-out (to horribly butcher several metaphors), is the natural byproduct of trauma. Chronic illness is traumatic. So finding ways of lowering the threshold for activating the stress response is really important for managing the mental health side of illness.

Natural beauty is a powerful healing force for me. I hope these pictures offered a moment to smile about today for you, too.

Overcoming Isolation: How to Enjoy Alone Time Caused by Chronic Illness

Chronic illness is isolating. Spending hours alone every day can be lonely. Here’s what I have learned about embracing solitude and learning to be comfortable in my own company.

Overcoming Isolation: How To Enjoy Alone Time Caused by Chronic Illness

Before the pandemic, I went out for lunch with friend who had just transitioned from her office to working from home. She described dreading the long hours on her own, and the resulting cabin fever of spending so much time in one place. As I listened, I realized what a significant transformation my own feelings about solitude have undergone during my illness experience.

As an extrovert, I’ve never looked forward to spending an entire day by myself – never mind a succession of days. I prefer to be around people. I’m happier spending an afternoon in a café than my living room. When chronic pain forced me out of grad school, I was at a loss of what to do with myself at home all day.

But I think it’s about more than being an introvert versus an extrovert. Looking back, I don’t think I ever distinguished between loneliness and solitude. I wasn’t comfortable with my own company. As I reflected on what I have learned about embracing solitude, I came to a few conclusions about the lessons my experience has taught me and what I’m still working on.

Being Present For Simple Pleasures

The first step on my path towards becoming a reformed extrovert was learning to value being present. A year or two after being diagnosed with fibromyalgia and endometriosis, I was referred to a Mindfulness-based Stress Reduction course at my hospital – an eight week program on using mindfulness meditation to manage pain. I often credit mindfulness meditation for maintaining my sanity, but one of the most important lessons that I’ve learned is that there are many enjoyable moments in ordinary life that can enrich our lives if only we pay attention in the present moment. The sun on your face, bird song out the window, a great cup of coffee, or a snuggle with your pet are all examples of simple, everyday pleasures that are available for us to enjoy if we learn to tune in to the present moment. Being on autopilot most of the time meant that I was oblivious to these experiences. It’s often easier to savor these times on your own rather than in company, and that’s one of the reasons I have come to value my alone time.

Exploring New Horizons (From Home)

A second change in my perspective has come from exploring my interests and finding new hobbies. In other words, unleashing my inner geek. From reading, and watching and listening, I’ve discovered that I love historical murder mystery books, political news, blogging, archaeology documentaries and calligraphy. I feel fortunate to live in an era of podcasts, online libraries, free e-courses, audiobooks and streaming. If your illness keeps you at home much of the time, being able to explore new horizons from your couch is fantastic. Whether or not you are crafty, artistic, musical or nerdy, there’s something out there for you to geek out on. I honestly haven’t found anything else I prefer to do on my own as much as to feed my curiosity. In the process, I have learned about myself. Learning more about the world helps you understand your own place in it better. Discovering new interests, and new talents is deeply rewarding. Spending time that way really transforms loneliness to solitude.

Making Time For Meaningful Self-Care

Finally, seeing the dividends of investing in self-care has made me more open to making time for myself. This isn’t an easy thing to do. You often see advice about self-care made out to seem like it’s as simple as lighting some candles and taking a bath now and then. I think it’s really about changing your relationship with yourself. Who wants to spend time with someone they don’t like very much? No one. If you have an inner critic with a megaphone, of course you don’t want to spend alone time together. The prospect of spending time by myself months that I was always looking for another distraction. In the age of scrolling through social media and binge watching TV, I think enjoying me-time is almost a lost art form (not that I like binge watching any less than the next person!).

It takes a change in mindset to identify negative self-talk, challenge it and replace it with a kinder and gentler perception of yourself. Self-care is really about self-compassion, and accepting that you’re only human, just like everyone else – it’s okay to be imperfect and make mistakes. For many people  there is a lot of worry, guilt, frustration and self-blame tied up in developing a chronic illness. Cultivating self-compassion in the face of difficult circumstances is a long process, and I’ve found that many lessons need to be re-learned over time. Journaling, meditating, CBT, and therapy are all ways to improve your relationship with yourself. Learning to be more comfortable in my own skin has made me enjoy my own company much more than before. And now I’m much more likely to enjoy a quiet cup of tea, listen to music, meditate, or actually do any of the self-care activities by myself that are listed in the lifestyle magazines!