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How To Communicate Better About Your Chronic Pain & Set Healthy Boundaries

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I hope the tips here can help you to feel more comfortable and confident communicating about your pain, and setting boundaries with others, so that you can focus on taking care of your health. Explaining pain in words is like trying to translate a word from one language into another, except that there is no equivalent word in the other language with the same meaning.

Chronic pain presents significant communication challenges for our relationships, such as needing to constantly cancel plans or having to ask for help. After all, relationships can be tricky enough without the additional complexities of living with chronic pain!

Communicating With Your Doctor About Your Pain

Doctors often attempt to simplify the problem of describing pain by asking patients to rate their pain on a number scale out of ten. Personally, I find this frustrating because one number cannot capture the whole picture of what my pain feels like. When I researched this topic I found a great tool, called the LOCATES scale (Health), for overcoming this challenge. It provides a framework for explaining all the dimensions of chronic pain:

L: Location of the pain and whether it travels to other body parts.
O: Other associated symptoms such as nausea, numbness, or weakness.
C: Character of the pain, whether it’s throbbing, sharp, dull, or burning.
A: Aggravating and alleviating factors. What makes the pain better or worse?
T: Timing of the pain, how long it lasts, is it constant or intermittent?
E: Environment where the pain occurs, for example, while working or at home.
S: Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

Try writing out your answers to each corresponding letter before your next appointment and share them with your doctor. I hope it helps you feel like you’ve communicated all of the dimensions of your pain!

Communicating With Your Loved Ones About Your Pain

When it comes to friends and family members, pain is a thorny subject. Chronic pain causes stress and heightened emotions. It’s completely natural to snap or get upset during a difficult conversation when you’re in pain. Sometimes just letting your loved ones know how you’re doing that day can help them adapt accordingly. You can try to use the LOCATES scale with your family members to help them understand more fully what you are experiencing.

The Chronic Pain Couple recommends “logging your daily pain levels in a pain app, [then] screenshot and text the daily summary to your partner before they get home from work…This will help your partner understand what your physical capacity is so that they can adjust their expectations of you accordingly.”

Sometimes family members or friends may doubt that your chronic pain is real, criticize how you handle your pain or even accuse you of being lazy if you have to cancel plans because of pain. Even the most supportive people can sometimes be insensitive or say the wrong thing.

 I’ve found that knowing how I want to handle different communication challenges associated with chronic pain ahead of time is helpful to improving my communication with the important people my life.

De-escalate Tension to Express Yourself  Clearly

Feeling like you aren’t being heard or that you are being judged when you communicate about your pain is frustrating. On top of that, it’s difficult to express yourself clearly when you are hurting and feel emotionally reactive or defensive.

 One way to de-escalate tension and have a more productive conversation is to take a pause before responding to an upsetting comment. The first step is to notice that you feel angry, hurt or upset. If identifying the feeling is tricky, look for physical cues of emotional reactivity – clenched jaw, stomach knot, tight chest, constricted throat or increased heart rate. Then intentionally take a pause until you feel ready to respond from a place of self-awareness. This could be as short as counting to 10 or as long as waiting until your pain flare has passed to continue the conversation. Sometimes I find going into another room and taking a short mindful meditation break (focusing on my breath for three minutes) really helpful.

Dealing With Unwanted Advice

In my experience there are two types of advice: well-meaning suggestions from someone who genuinely wants to help and judgmental statements framed as “advice.” In responding to the former, I like the advice from Live Plan Be: “The key is to find ways to respond to others that don’t drain you or get you riled up… You can give them a positive response without agreeing or committing to follow their advice.” An example might be “Sure, I’ll keep that in mind.”

Dealing with judgment in the form of advice (“maybe if you got off the couch and exercised more then you would feel better”) is another story altogether. Rather than feeling the need to explain yourself, and going around in circles, it’s best just to be direct and say politely that you aren’t interested in their advice: “When it comes to my health, it’s important to me that I do what I think is right. When you tell me what you think I should do, it’s not helpful to me. It would mean a lot if you would not do that anymore.”

Establishing Boundaries And Sticking To Them

Setting healthy boundaries is good for everyone, but it’s particularly important for people with chronic pain. The reality is that we face physical limitations, and pushing them has severe consequences in the form of pain and fatigue. It can be hard for the people around us to accept these limitations and to not take them personally. These limitations can put a strain on our partners and families, whose lives are also changed by our chronic conditions. The urge to avoid disappointing people is hard to resist and learning to put your health needs first is a difficult transition for many of us. But speaking up is important for your health and well-being! There are many positive personal benefits that result from learning to advocate for yourself, like greater self-confidence and agency, feeling more centered, and feeling that you are living with greater authenticity.

If possible, try to make a request to set a new boundary in a constructive way. Ask in a calm but firm manner, at a time when the other person is more likely to be receptive. When you clarify a new position in a relationship, speak in terms of “I” rather than “you” to minimize defensiveness on the part of the other person. It’s important you also stick to the boundary you have set, otherwise it’s unlikely the other person will too. Live Plan Be suggests a helpful tool for setting boundaries called the ‘Feedback Formula’:

When you … call me at 11pm at night (describe the person’s behaviour),

I feel… upset and frustrated (describe the emotion you feel), 

and the result is…my sleep is interrupted, and it that increases my pain (describe the effect of you experiencing that emotion). 

Would you be… willing to call me before 8pm instead?” (make your request).

In this example, after setting the boundary, don’t answer the phone after 11 pm, in order to reinforce the line you have drawn.

Ultimately, there’s no way to express yourself perfectly in every situation, and you aren’t to blame if other people can’t or won’t listen. If someone protests the boundaries you have set, try to remember that it’s their problem, not yours. It’s just further proof that the boundary line is needed. Focus on nurturing your healthy relationships, and put toxic relationships on the backburner. “Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with chronic pain” (My Chronic Pain Team).

Hopefully these tips can help you communicate more clearly about your pain, and establish boundaries with others, so that you can prioritize your self-care.  

Resources

Chronic Pain Couple (Top Tips For Communicating With Your Partner About Pain)

Health (How to Describe Your Pain to Doctors)

Harriet Lerner (The Dance of Anger, 2005, HarperCollins: NY)

Live Plan Be – Pain BC (Four Communication Tools for Close Relationships)

My Chronic Pain Team: How Good Boundaries Make Life Easier

Why Acupuncture Works For Chronic Pain, According To Science (And How To Make It Work For You!)

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Acupuncture is the therapeutic use of very thin, hair-width needles to stimulate specific points on the body to reduce pain or disease and promote wellbeing. Before I was diagnosed, I never had expected to become an acupuncture aficionado. My impression was that it seemed like a painful way to go about treating health conditions. I was also skeptical about how effective it could be. However, like many other chronic pain patients before me, the limited treatment options at my doctor’s office left me searching for alternatives. Trying acupuncture started to make sense. After looking into it and trying it myself, I have realized that it is a valuable tool in my chronic pain treatment toolbox.

Acupuncture has been used for over 3,000 years and is an integral part of Traditional Chinese Medicine (TCM). In this medical system, health is understood as achieving a balance between opposing forces (yin and yang). Traditionally, essential life energy, called ‘qi’ (chee) is believed to flow along channels in the body called meridians, keeping yin and yang balanced. Acupuncture points are mapped along meridians. If the flow of qi is blocked, it causes pain and disease (imbalance). Stimulating acupuncture points restores the flow of qi along the meridians, improving the health of the individual and restoring balance.

Western medicine offers a different perspective on how acupuncture works. Scientific studies show that acupuncture points are frequently located on nerve bundles or muscle trigger points (Beck, 2010). Acupuncture has been found to increase blood flow to tissues around the acupuncture point, promote healing of localized tissues and affect the central nervous system (Beck, 2010). Some of the nervous system effects include down-regulating pain sensation, encouraging a relaxed brain state, and calming the autonomic nervous system (Beck, 2010). However, some sceptics believe these findings only demonstrate a strong placebo response to acupuncture.

Dozens of studies have investigated whether acupuncture is an effective treatment for chronic pain. The National Centre for Complementary and Integrative Health (2016) explains that “Results from a number of studies suggest acupuncture may help…types of pain that are often chronic,” including low-back pain, neck pain and osteoarthritis. Acupuncture may also reduce the frequency of tension headaches and prevent migraines (NCCIH, 2016).

A recent study by Vas et al. (2016) investigated the effectiveness of individualized acupuncture treatment programs for patients with fibromyalgia (as opposed to most studies that use a standardized treatment program). Tailored treatments were compared to “sham acupuncture” treatments – needles inserted at random points on the body. Researchers found that, after nine weeks of 20 minute treatment sessions, individuals who received the tailored acupuncture reported a 41% decrease in pain compared to 27% for the sham acupuncture group (Vas, 2016).

The NCCIH (2016) explains that one of the benefits of acupuncture is the low-side effect profile (when conducted by a credentialed acupuncturist using sterilized needles). Since medication for chronic pain often causes significant side effects, this makes acupuncture an attractive treatment option for people living with chronic pain.

If you’re interested in trying to acupuncture, you should be aware that there are two broad types of practitioners. The first are practitioners of Traditional Chinese Medicine Acupuncture, and should have their certification accredited by a recognized professional body like the National Certification Commission for Acupuncture and Oriental Medicine. The second school of acupuncturists practice Contemporary Medical Acupuncture, based on western medical principles rather than balancing qi in the body. Often these practitioners are physiotherapists (physical therapists), naturopaths, or chiropractors who have received additional certifications in this area.

How do you decide which type of practitioner to see? TCM acupuncturists will treat your from a whole-body perspective, and may offer new insights or see connections other medical professionals have missed. Contemporary medical acupuncturists are probably most effective at treating specific musculoskeletel problems. For example, my physiotherapy sessions have become more effective at relieving neck and low back muscles spasms since my therapist began incorporating acupuncture. In contrast, my TCM acupuncturist has helped me reduce my overall number of flares, stress and fatigue, but is less helpful at resolving immediate problems. I have to add that TCM acupuncturists are often much more adept at inserting needles painlessly – after all, this is their area of expertise! 

You may be thinking “But I hate needles; this sounds too painful!” In my own experience, the needle insertion feels like a slight pinch, which disappears in 3-5 seconds. If there is any discomfort, the acupuncturist will remove the needle. After insertion, you usually cannot feel the needles. Occasionally, there may be a sense of warmth or heaviness around the insertion point. The needles are typically left in for 15-30 minutes while you rest.

There is a wide variation in the skill level and “bedside manner” of acupuncturists. For that reason, it’s important to do your research and come prepared with a list of questions:

  • Research the practitioner you are considering seeing to ensure that they have a recognized certification from an accrediting body.
  •  Ensure that the clinic has a clean needle policy – that all needles are pre-packaged, sterilized and unused (I have never come across a clinic that does not do this, but better to be safe than sorry!)
  • Contact the clinic and ask whether they have experience treating clients who have similar chronic pain conditions. Do not go to a spa or aesthetician for pain treatment!
  • Ask that they provide extra pillows to support your body while lying down and a treatment table with a head cradle (an oval opening for face support when you are lying on your stomach, so you do not need to turn your head to the side.
  • Ensure that they provide you with a way to call for assistance. It is uncomfortable to move while needles are inserted, so it is imperative that you can get help. The clinic should be able to provide you with a button to push to summon help or that someone can hear you easily.
  • Tell the practitioner if this is your first time receiving acupuncture. Ask that they only use 5 to 10 needles so that you can test how your body will respond. There is no need to trigger a flare by starting with aggressive treatment.
  • You may be offered additional treatments, like acupuncture with a mild electric current, cupping (using suction cups) or moxibustion. Make sure all your questions are answered before you start and always ‘trial’ the treatment the first time. Once, I agree to have my entire back suction cupped, and I had the pain and bruises for days afterward. If I had only allowed a small area to be cupped, I could have realized this treatment wasn’t for me without the suffering!
  • Just like with anyone who is a part of your treatment team, it’s important to make sure that you get along and that they provide patient-centered care.

References:

Beck, M. (2010). Decoding an Ancient Therapy. Wall Street Journal. Retrieved Oct. 15, 2016, from http://www.wsj.com/articles/SB10001424052748704841304575137872667749264

Nahin, R., et al. (2016). Evidence-based evaluation of complementary health approaches for pain management in the United States. Mayo Clinic Proceedings, 91(9): 1292-1306. doi: http://dx.doi.org/10.1016/j.mayocp.2016.06.007

NCCIH. (2016, January). Acupuncture: In-Depth. Retrieved Oct. 15, 2016, from https://nccih.nih.gov/health/acupuncture/introduction

Vas, J., et al. (2016). Acupuncture for fibromyalgia in primary care: a randomised controlled trial. Acupuncture in Medicine, 34: 257-66. doi: 10.1136/acupmed-2015-010950.

Vickers, A. J., et al. (2012). Acupuncture for Chronic Pain Individual Patient Meta-analysis. Arch Intern Med. 172(19): 1444-53. doi:10.1001/archinternmed.2012.365

Here’s How I’m Staying Sane in 2020: Easy, Lazy De-Stressors

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Here's How I'm Staying Sane in 2020

2020 is basically a global dumpster fire. It’s hard to find the positive any way you look at things, from the pandemic, to politics, to police brutality. Due to chronic pain, I already have a low stress threshold. It’s all just too much some times.

Personally, I’m struggling to keep up with my meditation practice, even though I know it helps me. Instead I’m trying to be mindful while I do everyday tasks, like taking a walk, making dinner of even brushing my teeth. Instead I’m finding that turning to comforting, enjoyable things is the best way to de-stress and stay sane (more or less?).

Just hoping I might get around to nature walks or cat cuddles means I either forget, or I don’t mindfully take it in. Walking through a park while looking at my phone cancels out the benefits. So, I’ve found that intentionally seeking these things out and planning to do them has helped me to make them  part of my routine. Which one of these ideas do you find most helpful?

Animal Companionship

If I was going to name the reasons why I love the company of my cat Sara, I would list her affection, her funny antics and her general adorable-ness. But it turns out that, in addition, spending time with her is also good for my health. Specifically, animal companionship can reduce pain, lower stress and improve mood in people with chronic pain (Confronting  Chronic  Pain). These benefits are experienced not only by pet parents, but by anybody who spends time with an animal. If adopting a cat or dog is not feasible for you, consider visiting regularly with a friend or family member’s pet. You can also talk with your doctor about clinics or organizations that provide therapy dog visits – even a couple of short sessions per week can make a difference!

Commune With Nature

The power of flowers: did you know that just looking at images of nature is enough to reduce your stress and anxiety? A 2015 study published in the International Journal of Environmental Research and Public Health found that just five minutes spent gazing at natural photos promotes relaxation and recovery after experiencing a stressful period. Who doesn’t need some of that right now?!

Of course, getting out into nature is even better: it lowers stress levels and boosts mood. It help us to get out of our heads, stop ruminating about our worries and pay attention to the here-and-now. One study showed that walking in a forest lowered blood pressure and reduced levels of the stress hormone cortisol (NBC). You don’t have to be able to hike to enjoy nature. As long as you are in a natural setting – sitting on a bench, enjoying a picnic, or lying back with the car doors open– are all ways to enjoy the benefits of relaxing outside. Recently, I researched accessible parks and paths in my area and have been able to spend several lovely afternoons relaxing in nature – I always feel better for several days afterwards!

Tune in to Music

Listening to music is a powerful way to de-stress. Music directly impacts our feelings via the unique effect listening to it has on the functioning of our brains and bodies. Research has demonstrated that listening to music, particularly calming classical music, causes lower blood pressure, reduced heart rate and a drop in stress hormones (Psych Central). Music acts as a positive distraction, while also anchoring us in the present moment. But the benefits don’t stop there. Tuning in for an hour a day has been found to reduce pain and depressionby up to a quarter (Science Daily.) In this study, it did not matter whether participants listened to their favourite relaxing music or music chosen by researchers. I’ve found that listening to music when I’m having trouble sleeping or experiencing a lot of fatigue is very renewing.

Try Probiotics

Could the way to mental health be through your stomach? An emerging field of research has found links between probiotics (healthful bacteria that live in the digestive tract) in the gut and brain function. Some probiotics produce neurotransmitters (chemicals that regulate the nervous system), such as serotonin, that affect mood. When neurotransmitters are secreted by probiotics in the digestive tract, they may trigger the complex nerve network in the gut to signal the brain in a way that positively effects emotions (University Health News). In some studies, certain probiotics have been shown to reduce stress, anxiety and depression, including Lactobacillus acidophilus and Bifidobacterium bifidum. Probiotics can be taken as a supplement or eaten in fermented foods like yogurt, kefir, kombucha, miso and kimchi.

Laughter is the Best Medicine

We’ve all heard that laughter is the best medicine, but we feel stressed it can be hard to find the humour in things. However, laughter is one of the best antidotes for stress and anxiety – just 5 or 10 minutes can reduce muscle tension, increase endorphin levels, lower blood pressure and regulate levels of stress hormone cortisol (Adrenal Fatigue Solution). Rather than hoping something funny will happen on a stressful day, take advantage of the benefits of laughter by watching your favourite comedy show, sitcom or stand-up comedian. I find it hard to stay in a bad mood after watching late night TV, and who doesn’t love being able to say that you have to watch another episode of your favourite sitcom because it’s good for your mental health?

 

Resources:

Adrenal Fatigue Solution (The stress-relieving benefits of laughter)

Confronting Chronic Pain (Can a pet help your chronic pain?)

NBC (How the simple act of being in nature helps you de-stress)

Psych Central (The power of music to reduce stress)

Science Daily (Listening to music can reduce chronic pain and Depression by up to a quarter)

University Health News (The best probiotics for mood: Psycho-biotics may enhance the gut brain connection)

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

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

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

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

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

The Attitude of Gratitude

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

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

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

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

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

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

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

Too Much News is Bad News: Headline Stress Disorder

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

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

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

Media Diet: How to Navigate Social Media During Stressful Times

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

> Read this primer on becoming an ally: 

TO BE AN ALLY IS TO...

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

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

Get Educated

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

Add Your Voice to a Petition

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

 

 

 

 

 

 

Get Involved With a Racial Justice Organization

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

Support Black-Owned Businesses

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

 Support Justice Reform

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

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

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Copy of Collective Chronic Wisdon (1)

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

As a patient advocate, I have written about how ableism puts unfair barriers in place to prevent people with illnesses from participating fully in society. I have talked about how women are often disbelieved and dismissed by the medical establishment. But I have failed to write about how black people, indigenous people, and people of colour are at a greater risk of developing pain and illness, and undertreated for their conditions, compared to white people. And my silence is a message. Because, to not say anything when people are literally screaming for their lives is to say a lot.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sources: 

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

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

 

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

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

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

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

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

Visual Metaphors Can Improve Communication By Evoking Empathy Mirror Neurons

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

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

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

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

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

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

Use The Power Of Your Imagination To Manage Your Pain

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

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

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

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

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

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

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

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

Resources

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

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

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

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

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

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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

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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!

 

 

 

Flower Power: Looking At These Pictures Will Reduce Your Anxiety Right Now

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The power of flowers: did you know that just looking at images of nature is enough to reduce your stress and anxiety? A 2015 study published in the International Journal of Environmental Research and Public Health found that just five minutes spent gazing at natural photos promotes relaxation and recovery after experiencing a stressful period. Who doesn’t need some of that right now?!

If you weren’t able to get outside into nature during the last few days, then I hope these photos bring nature to you! Flowers offer hope and joy, which is so important during the specific stressors of the global pandemic on those of us living with chronic illness. And the power of flowers means that savoring their beauty helps to improve our well-being.

Apple Blossoms

Magnolia Blossoms

Blue Phlox

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Does anyone know what these gorgeous blooms are?

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Daffodils

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Crocuses