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/

Collective Chronic Wisdom: My 5 Favorite Spring Posts by Chronic Illness Bloggers on Finding Hope During Difficult Days

 

Collective Chronic Wisdon

The world seems upside down at the moment, and the headlines are truly overwhelming, full of the pain and suffering experienced by so many as a result of the pandemic and systemic racism in the criminal justice system. Yet daily life goes on, and we still need to care for our bodies and our minds, while managing chronic illness in the time of covid-19.  I feel exhausted and stressed, and have been recently neglecting self-care and it’s deeper companion, self-compassion. So I decided to turn to the collective wisdom of my fellow chronic illness bloggers. I’m sharing a few of my favourite recent posts on the realities of daily life with chronic conditions during times of uncertainty, and helpful perspectives on how to find beauty and hope during difficult days.

Not Just Tired

More Than Just a Hashtag

For the past year, I’ve really enjoyed participating in the #joyinspring photography hashtag started by @Not_Just_Tired on twitter. I really enjoy sharing photos of gorgeous spring blooms, and learning what kind they are, by posting using the hashtag. Looking at the lovely images posted by others is always a pleasure, especially when so much of social media is full of difficult and painful news. It’s encouraged me to be mindful on my walks, and to really savour the beauty around me – basically, to stop and smell the roses (#sorrynotsorry). Here, she shares the impact of creating this hashtag, as well as her daily gratitude #mydailythankyou posts.

Blatherings with Terry

Finding Calm During Times of Uneasiness

We may not be in control of what happens outside of our quarantined zones, we can control our thoughts and how we cope. We can choose calm over chaos and fear…These seven-ish behaviors, practices, factors in my life, absolutely help keep me together. Well, quasi together. Ok, as “together” as I’m probably going to be! (lol + acceptance of my here and now)

My Medical Musings

Living A “Simply Special” Life, Despite Chronic Illness, Despite COVID-19

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new manageable lifestyle. It’s unique to my needs but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities but it doesn’t have to dictate my happiness.

Brain Lesion and Me

A Not So Very Normal Life:

When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal. Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives. Nor can we remember what it was not to endure such unyielding and debilitating symptoms.

The Winding Willows

The Key to Happiness Can Be Found in the Dirt

Have you ever planted a seed and watched in germinate then grow and bloom into a beautiful plant? Because there is so much hope for the future when you’re watching the transformative process of a plant growing.

I’ve been growing veggie seedlings in the past few weeks, and seeing the bright green sprouts grow after nurturing them with the best sunlight window positioning, carefully chosen seed starting potting soil, a watering regimen, and too much research has been incredibly rewarding. Especially since the entire world seems upside down.

 

From Pain to Painless: Resonant Botanicals Lotions Review

Resonant Botanicals Review

I’m excited to share my experiences trying Resonant Botanicals pain relief lotions, including Painless X, Neuro-Soothe and Calm Day,  which they were kind enough to provide free samples of for this product review. I’m even more excited to announce my first giveaway! Read on to find out how you can enter.

Although the products were a gift, all opinions in this review are my own, and I was in no way influenced by the company. This post contains affiliate links which help support the blog. 

As it happened, I was experiencing a severe muscle spasm on the day that the Resonant Botanicals creams were delivered (a crick in my neck, caused by an irritated radial nerve, which made the muscles in my neck and upper back seize up). Since I was in a lot of pain, I decided it was a prime time to try Painless X.

Applying Resonant Botanicals Lotions

When I pumped the lotion into my hand, the first thing I noticed was the lovely citrus-herb scent, which reminded me of key-lime pie. The scent is subtle and doesn’t linger, unlike Bengay, and other menthol based products. I found the process of applying the cream relaxing, with the scent itself acting like aromatherapy. Not surprisingly, the ingredients in Resonant Botanicals creams include essential oils, and terpenes – plant-based aromatic compounds, which are used in aromatherapy, and have been shown to boost health and well-being by exerting antioxidant and anti-inflammatory effects.

As I massaged it onto my shoulder, the Painless X cream rubbed in completely, without leaving a greasy residue. It felt more like a quality moisturizer than the usual topical pain cream. When I read the ingredients, I realized the difference is because the lotion contains jojoba oil, Evening Primrose oil, and Sea Buckthorn oil.

Massaging the cream on the places where I feel sore has become a relaxing part of my morning and bedtime routine. None of the Resonant Botanicals creams cause a burning, stinging or tingling sensation like Tiger Balm, capsaicin, Bio Freeze or A535. I also like the the lotions are cruelty-free, paraben free, non-gmo and silicone free!

How Effective are Resonant Botanicals Pain Relief Creams?

After I applied the Painless X cream, I went back to watching my TV show. When it ended, I was surprised to realize that I’d actually forgotten about my shoulder pain, because it wasn’t constantly intruding into my awareness anymore. That’s ultimately how I felt about both the Painless X and Neuro-Soothe products – that they dial down the pain intensity so that I can focus on other things.

Painless X Review

I found the Painless X most effective for muscle aches, such as the hard block of knots in my upper back. It typically reduced the pain from a 6/10 to a 2/10, and lasted for 3-4 hours. Painless-X includes potent natural pain relievers like hemp oil extract (the highest concentration offered by Resident Botanicals of 52.5 mg/oz of CBD), which research has demonstrated is effective for reducing chronic pain. Painless X also includes Arnica extract, MSM and magnesium, which are also natural painkillers. The cream provided significant pain relief and I’ve enthusiastically incorporated it into my daily pain management regimen. Of course, it didn’t act as a total cure – so if I immediately started typing or cutting veggies,  pain and muscle spasm would flare – however, if you have chronic pain, having a reliable source of relief is invaluable.

Neuro-Soothe

The Neuro-Soothe lotion helped with tenderness and tension in locations like my glute muscles, caused by my sciatic nerve pain, or wrist pain caused by radial nerve irritation. I also found it effective for temporary strains and pains, like the morning I woke up with elbow tendinitis after sleeping in an awkward position the previous night. The pain relieving ingredients in Neuro-Soothe include anti-inflammatories like hemp oil extract (37.5 mg/oz of CBD), ginger root powder, white willow bark extract, and magnesium chloride.

Deeper pains that originate in my spine, such as deep abdominal/pelvic neuropathic pain, were not reduced as much as surface muscular pain, but that makes sense because these are topical products. Even in the cases of deeper level nerve pain, Neuro-Soothe helped to relieve the surrounding muscle spasms.

Calm Day Review

Lately, like many others, I’ve been feeling quite stressed and anxious about the daily news headlines, so I find the Calm Day quite helpful. It helps take the edge off about 20-30 minutes later by promoting a relaxed mental state. In addition to essential oils, and a low concentration of hemp oil extract, Calm Day also includes the de-stressing herbs Ashwaganda, lemon balm, passionflower and St. John’s wort. I have also found it useful to apply Calm Day in the middle of the night when my insomnia is acting up. I either apply it where I am sore, or use it on my hands and feet.

Interestingly, I also felt mellow and almost drowsy about half an hour after applying Painless X and Neuro-Soothe, with the stronger hemp extracts concentrations intensifying this effect. This was quite helpful with relaxing before bedtime, so I usually prefer to use the Painless X then, and the Neuro-Soothe in the morning.

If you are interested in trying Resonant Botanicals pain relief lotions, please click here.

Giveaway!

I’m really excited to be doing my first giveaway! The first prize will include all three lotions – Painless X, Neuro-Soothe, and Calm Day – in the largest bottles,  8 oz , worth a total of $205! The 2nd, 3rd and 4th prize will include one large 8 oz size bottle of either Painless X, Neuro-Soothe, or Calm Day.

Update: Congrats to Kyrie, Janice, Kim and Sara on winning the giveaway prizes!

 

 

 

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/

 

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

Go Beyond Self-Care: Why We Need To Talk About Self-Compassion Instead

Why We Need To Talk About Self-Compassion Instead

 

Bubble baths. Lit candles. Dark chocolate. Steaming cups of tea. These are the self-care recommendations we are regularly encouraged to add to our daily lives. I love these things as much as anybody else. But adding a list of temporarily enjoyable activities to your to-do list is ultimately only the frosting on the cake. It feels good, but it doesn’t substantially change anything. In fact, sometimes these activities can feel like extra obligations; something the average super-woman or man is expected to fold into their life, along with all the other demands on their attention.

Self-compassion means “cherishing yourself in the midst of emotional pain and distress” (Germer, 2009).[i] When you hear about a struggle that your best friend, child, partner or other loved one is facing, the feelings of support, good-will, and love that you feel for them together represent true compassion. Sadly, it’s much harder to feel those things for ourselves. Often we respond to challenging circumstances by criticizing ourselves for getting into the situation or pushing ourselves too hard to get out of it. This just piles on suffering on top of suffering.

In contrast, befriending yourself, and intentionally directing compassion towards yourself, changes your relationship to difficult thoughts, feelings and experiences. It sounds easy, but treating yourself with the same acceptance, kindness and understanding you extend towards your friends and family members is something very few people actually know how to do.

What Is Self-Compassion?

Researcher Kristin Neff has identified three elements of self-compassion– self-kindness, mindfulness and common humanity.[ii] Each element of self-compassion corresponds to an opposite element of negative emotional reactivity that increases suffering; namely self-judgment (the opposite of self-kindness), self-preoccupation (the opposite of mindfulness) and isolation (the opposite of common humanity). Let’s delve further into what each of these terms mean.

  • Self-kindness means to react with warmth and understanding to your own flaws and mistakes. By adopting this attitude, you treat yourself like a friend experiencing a setback rather than a critic evaluating a performance (self-judgement). Self-kindness means offering yourself the support and comfort that a close friend would. In a difficult moment, ask “what is the best thing I can do for myself right now?”
  • Mindfulness in self-compassion involves acknowledging the temporary and changing nature of your own thoughts and feelings, seeing that they come and go like clouds in the sky. Instead of ruminating on or avoiding feelings grief or frustration about the losses and limitations that chronic illness imposes on our lives (self-preoccupation), we recognize them, feel them, and let them move through us. Tara Brach says that “compassion honours our experience; it allows us to be intimate with the life of this moment as it is.[iii]
  • Common humanity means saying to yourself “I’m only human, just like everyone else,” instead of feeling alone in the world with your difficulties (isolation). It involves taking a wide perspective, remembering all the people in the world who also live with chronic illness, and knowing that it’s more than likely that someone else has been in the same spot you’re in. After all, having an illness or disability is a common thread woven into the fabric of human experience.

Self-Compassion Meditation Practice

Self-compassion sounds good, but how do you actually put it into practice? How do you go about befriending yourself and changing your approach to coping with difficult circumstances? A type of meditation called loving-kindness meditation, which a secular practice based on traditional Buddhism, can point the way. Sharon Salzberg, a pioneering meditation instructor who brought loving-kindness meditation to the west, describes it as “a living tradition of meditation practices that cultivate love, compassion, [and] sympathetic joy.”[iv] Based on the common principles of kindness, mindfulness and connection to our common humanity, I use the terms loving-kindness and compassion interchangeably. It may sound a bit sappy, or feel awkward at first, but that shouldn’t get in the way of pursuing your best interest.

In  loving-kindness meditation practice focused on direction compassion towards the self, the focus of awareness is the silent repetition of specific phrases in your mind. Your loving-kindness practice could use the following phrases:

May I be safe – we wish for safety in the first line because being free from danger is a prerequisite for well-being

May I be peaceful – a wish for equanimity in the midst of the unpredictability of chronic illness

May I live fully in the present – a wish to live whole-heartedly, to live a rich, fully experienced life

May I embody love and kindness – this is a wish to be compassionate to our bodies, even if they suffer

May I live with ease – a wish for daily grace in our lives, a lessening of our burdens and struggles

Try sitting with your breath for a minute, and then repeating these phrases several times. Or you can say them silently to yourself during a difficult moment.

When we say each phrase, we are setting an intention to be a good friend to ourselves, like planting a seed. We will reap the harvest – experience compassion for ourselves – in the future. As Christopher Germer (2009) explains, loving-kindness meditation is about learning to feel goodwill towards ourselves, not to generate good feelings in the moment. Each phrase is an expression of hope for the well-being of your future self. And just like you hope for nothing but the best for your loved ones and friends in the days and years to come, the phrases of loving-kindness help you to cultivate this “inclination of heart” toward yourself (Germer, 2009).

What Does the Science Say?

Loving-kindness meditation can reduce chronic low back pain, according to a pilot trial (Carson et al., 2005).[v] Compared to standard care, individuals who participated in the eight week compassion meditation program had lower levels of pain, distress, anger and tension. A second study looked at whether compassion meditation could reduce negative mental states, in addition to decreasing pain levels (Chapin et al., 2014).[vi] Participants in the nine week loving-kindness meditation course reported a moderate reduction in their pain severity. Importantly, participants and their significant others also reported a decrease in negative emotional states like anger by the end of the program.

After a seven week loving-kindness meditation course, one study found a cumulative increase in daily positive emotions, regardless of whether the participant meditated on that day or not. The overall increase in positive emotions was associated with a significant increase in positive personal resources, like self-acceptance, mindful attention, a sense of purpose, and developing supportive relationships (Fredrickson et al., 2008).[vii]

Whether you do a formal practice, or just consciously remind yourself in challenging circumstances of the principles of self-compassion – kindness, mindfulness and common humanity – ask yourself – if a close friend of yours was in the same situation, what would you say to them? Most likely you would encourage them to go easy on themselves. You would tell them that they don’t need to be perfect, and remind them it’s okay to have bad days. Practice saying these things to yourself. Then offer yourself comfort by saying “what is the best thing I can do for myself in this moment?” This is when the list of self-care activities take on a deeper meaning – a symbol of the self-kindness you are cultivating. I hope that taking this approach helps to reduce your suffering and increase your wellbeing in a more substantive way than discussions of self-care can typically promise to do.

Find other articles on fibromyalgia at the Fibro Bloggers Directory

Go Beyond Self-Care Why We Need To Talk About Self-Compassion Instead

[i] Germer, Christopher. (2009). “Chapter 4: What’s Self Compassion?” in The Mindful Path to Self-Compassion. Guildford Publications: New York.

[ii] Neff, Kristin. (2012). “The Power of Self-Compassion.” Psychology Today. Retrieved September 1, 2019 from https://www.psychologytoday.com/ca/blog/the-power-self-compassion/201207/the-physiology-self-compassion

[iii] Brach, Tara. (2003). “Chapter Two: Awakening From the Trance” in Radical Acceptance. Random House: London.

[iv] Salzberg, Sharon. (2011). “Introduction.” Lovingkindness: The Revolutionary Art of Happiness. Shambala Publications: Boston.

[v] Carson, JW et al. (2005). “Loving-kindness meditation for chronic low back pain.” Journal of Holistic Nursing: 23(3): 287-304.

[vi] Chapin, Heather et al. (2014). “Pilot Study of a Compassion Meditation Intervention in Chronic Pain.” Journal of Compassionate Health Care 1(4).

[vii] Fredrickson, Barbara. (2008). “Open Hearts Build Lives: Positive Emotions Induced Through Lovingkindness Meditation Build Consequential Personal Resources.” Journal of Personal Social Psychology 95(5): 1045-1062.

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!

The Science of Savoring Simple Pleasures: How Mindfulness of Good Moments can Reduce Stress and Improve Wellbeing in Chronic Illness

Does the following description capture what goes on in your mind as you go about your day?

Your frequently scan your body to assess changing pain levels, fatigue, body temperature, medication side effects, and mental function. You monitor your changing environment – from noise, lights, smells, the distance you have to travel, to finding a comfortable position to sit in, among many other features. Then you try to calculate how you should modify your plans based on all of these factors, like a computer running a complex algorithm.

It’s exhausting. In this state, your brain is constantly on red alert and your nervous system is tautly wound, waiting for the next threat or crisis to jump out and surprise you. And for good reason, since, if you have a chronic condition, your body is constantly assaulted by difficult and unpredictable symptoms, which in turn make it challenging to navigate different environments. However, when the brain and nervous system are frequently in crisis mode, they trigger a flood of stress hormones, including cortisol and norepinephrine. This reaction is called the fight or flight mode and it primes your body to cope with dangerous situations. Cortisol and norepinephrine cause a cascade of body wide changes – fast pulse, shallow breathing, racing thoughts, sticky palms, and tensed muscles. Studies have found that people living with fibromyalgia have a hyperactive fight or flight response, which is correlated with pain levels.

Being in a constant state of stress causes your mental, emotional and physical well-being to suffer. In fact, the frequent presence of cortisol actually sensitizes the region of the brain that assesses threat levels to stressors. This region is called the amygdala, and when it becomes sensitized to cortisol, it puts our central nervous system on a hairtrigger, ready to overreact to nonthreatening situations. Stress worsens pain levels, fatigue, anxiety and depression.

We want our brain to accurately assess potential risks and opportunities, to be vigilant but not hypervigilant. So how can we calm a stressed out nervous system? One promising avenue advocated by Rick Hanson is through a set of mindfulness practices that intentionally focus on sensory pleasures and good moments that we typically disregard. Instead of only scanning for negatives, like pain and fatigue, we do the opposite – deliberately bringing our attention to what feels good and enjoyable throughout the day.

Mindfulness means paying attention, on purpose, to the present moment, with acceptance. Mindfulness meditation is often taught as a brain exercise, in which you learn to practice concentrating on the present moment, one breath at a time. When your mind inevitably wanders off, you bring it back to the present moment, over and over. Gradually you get better at staying in the here and now for longer stretches of time. Just as importantly, you learn about the types of worries that draw your attention, like a moth to a flame. When you know more about the underlying problems that bother you, you can take better care of yourself while you cope with those challenges.

The point of these exercises is not to disregard all of the information your senses are communicating to you about how you’re doing. For example, body awareness is important for pacing when you live with chronic pain, so that you don’t overdo an activity and trigger a flareup. However, being mindfully aware is different than being hypervigilant. Life can often be easier to handle in the here and now. Sayings like “one problem at a time” and “we’ll cross that bridge when we get there” are good reminders about this simple truth. Most anxiety comes from ruminating on the past or worrying about the future.

It’s all too easy for me to jump from noticing that my neck is sore when I wake up to worrying that I won’t be able to do any computer work next two days and all of my work will have to be put on hold. That might happen, but then again it may not happen. It’s much more productive for me to do what I can in the moment, like taking a warm shower or gently stretching my neck than imagining all of the worst-case scenarios. Unfortunately, if you’re like me, simply resolving not to jump to conclusions won’t stop your mind from going ahead and jumping ahead anyway. Staying present takes practice.

Mindfulness also opens us up to the sensory experiences and good moments that we typically disregard while we go around on autopilot. Present moment awareness is a natural state of being that we’ve all experienced, perhaps while watching a beautiful sunset, savouring a delicious meal or sharing a poignant moment with a loved one. Often we wish we could be more present, more of the time. Mindfulness makes us feel like we are living our lives to the fullest.

Rick Hanson explains that we can turn these simple pleasures into informal mindfulness practices, by stopping briefly several times during the day. He calls these practices “taking in the good”. The first step is to notice a positive moment – essentially, stop and smell the roses. For example, stopping to recognize a sensory experience like taking your first step of coffee in the morning, enjoying a good hug, or gazing out the window. The moment doesn’t have to be perfect – you’re not waiting for pure bliss, just a moment of appreciation. Or it could take the form of a good feeling, like a small (or big) accomplishment, sharing a laugh with a loved one or playing with your pet. These moments are available to us every day but we normally forget them soon after they happen because, as Hanson says, our brains are “Teflon for good but Velcro for bad.”

The second step is to stay with the sense of enjoyment or appreciation for at least 12 seconds. Mindfully return your attention to your senses if it wanders off. I find it particularly helpful to notice where in my body I have the felt sense of enjoyment, such as a warm feeling in the heart region or a release of tension the neck muscles. Finally, intentionally decide to absorb this positive experience. You could imagine breathing in the good sensations or feelings that accompanied the experience. Hanson suggests visualizing putting the experience inside a box or imagining a warm glow spreading through your chest. I like the idea of imagining stringing a pearl onto a strand, with each one representing recent good experiences.

These practices may sound new age-y or silly but there is research behind them to show how they can change the brain and enhance a sense of overall well-being. The brain is comprised of billions of neuron cells, which signal each other across small gaps called synapses. When we repeatedly engage a neural circuit, it changes the brain: “active synapses become more sensitive, new synapses start growing within minutes, busy regions get more blood since they need more oxygen… [and] the genes inside neurons turn on and off (Hanson).” In contrast, less active neural circuits begin to wither. Intentionally focusing on positive experiences can lower the activity of brain regions that trigger stress and increase the activity of the nervous system associated with well-being. You can ‘use the mind to build the brain’, which is a powerful tool for coping better with chronic illness challenges. Personally, I have found a greater sense of enjoyment in the everyday since I began ‘taking in the good’.

First published in UK Fibro Magazine

Hanson, Rick. 2013. Hardwiring happiness: the new brain science of contentment calm, and confidence. Harmony: NY, United States.

Martinez-Martinez LA, Mora T, Vargas A, et al. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clinical Rheumatol 2014;20:14650

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

When I think of the holiday season, two competing feelings immediately come up – nostalgic happiness at the thought of celebrating with loved ones (as well as the Christmas cookies), and impending panic at the logistical nightmare of shopping, decorating, baking and visiting. Chronic illness has tilted the balance towards anxiety outweighing anticipation because  my symptoms through so many obstacles in the way of getting ready for everything the holidays entail. Last year I shared mindfulness tips for managing the stress that can accompany the month of December – through staying present, being self-aware and treating yourself with kindness.

This year I’m reflecting on the true spirit of the holidays and what I really want to celebrate. The thing is – for most people, shopping till you drop, cooking up a storm, decking the halls, party hopping, and getting up early with the kids to open presents from Santa – is the essence of the Christmas celebration. Ideally, bonding with your loved ones over good food and the fun of exchanging presents puts family and togetherness at the heart of the holiday season.

A common criticism about how Christmas and other holidays are celebrated is that perfectionism over decorating and party planning, as well as greed in the form of materialistic gift-giving, take over the true purpose of the season. The expectations that we internalize and put on ourselves can really ruin the holiday spirit. What I’ve come to learn is that, If you live with chronic illness, you will inevitably fail to do all the things you’re supposed to do this time of the year. It sucks! But I’ve also learned that we don’t really have to live with the stress, disappointment and sense of failure that result from setting unrealistic holiday goals.

By returning to the core values underlying Christmas, Hanukkah, and other celebrations – generosity, compassion, hope, gratitude and love – I think we can find a new ways to meaningfully celebrate this time of the year. I’m trying something radical this year – extending some of those holiday feelings towards myself. So often I read tweet and blogs about how those of us who live with chronic illness are overachievers or perfectionists. Most likely the person you showed the least compassion and kindness to last December was yourself – am I right?

So what does the holiday season look like if I am compassionate to myself? Making more realistic plans and setting gentle boundaries is the first step. We have three families to celebrate with – my in-laws and my Mom’s and Dad’s families. This year we told everyone that back-to-back celebrations would not be possible. The end result  is that we have Christmas Eve plans, and Boxing Day Plans, but  we are staying home alone on Christmas day. Initially I felt quite guilty about this because I know everyone would love to see us on that day, but if I’m not gentle with myself I will ultimately end up having to cancel. And that would be worse! Compassion is like the oxygen mask analogy – you have to put yours on first before you can help the people beside you.

Another way that I am treating myself with more kindness is to use a softer and gentler tone in my own mind towards myself. When I start to feel stressed about not getting perfect gifts for everyone, or whatever problem that my inner gets judgmental about, I’m trying to take a deep breath and responding instead with more compassion and understanding. A good question to ask yourself is “what would I tell my best friend if she was facing this issue?”

I recently read a book called The Mindful Path to Self-Compassion which gave me the insight that, while we can’t change the challenging experiences or difficult emotions we face, we can change how we treat ourselves as we go along. Much of our suffering comes from resisting what is unfolding – worrying, ruminating, regretting, dreading, clinging, judging – rather than from direct experience of a painful circumstance. But if we can befriend ourselves, and compassionately hold ourselves while we go through a tough time, a lot of the unnecessary suffering can be short-circuited. It’s an ongoing practice, of course!

So far, I’m already finding it helpful to use the ‘loving-kindness phrases’ from compassion meditation to wish: “May I be safe, may I be peaceful,  may I be joyful, may I live with ease and wellbeing”. I repeat these phrases both when I’m sitting in meditation or feeling anxious during the day. This is a secular practice I feel comfortable with, but many people send a prayer rather than a wish. In the Christian tradition, you are asked to ‘love you neighbour as yourself’, meaning cultivating love for yourself and caring for others. This can be done as a blessing exercise: “May I experience God’s love”, repeated for peace, safety and wellbeing.

In the guided meditation, we are then invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their happiness and well-being (May he/she be safe…peaceful…joyful…live with ease and wellbeing). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to all beings in the world. Here is an additional guided practice, along with the script, from Mindful Magazine.

If you are in conversation with someone at a holiday gathering, you can silently repeat the phrases to yourself as a wish or a blessing for them. Staying present is one of the best gifts you can give those you care about, rather than getting distracted by ticking items of your ‘perfect holiday to-do list’. Loving kindness phrases can re-anchor you in the moment to the values you are trying to put at the heart of the holidays.

This Christmas, as I try to direct the spirit of the holidays towards myself, I hope that, in turn, I can pass it on by treating my loved ones with more gratitude and loving kindness! By emphasizing these values, I think  how we choose to spend our time will change. What form of togetherness actually gives you a sense of meaning and connection?  Since pacing limits what I can do, I’m going to prioritize the things that really matter and hopefully have a heartfelt holiday season!