Toxic Perfectionism: How to End the Cycles of Self-Blame for Imperfectly Coping with Chronic Illness

Do you blame yourself for pushing too hard and crashing afterwards? Have you created a 40 item treatment plan in your bullet journal? Do you judge yourself for not taking all your supplements, doing your strengthening exercises, meditating, or other lifestyle treatment strategies? Of course, you probably know that all the guilt and self-blame isn’t helpful, but it’s hard to stop the voice of your inner perfectionist that says, “Why can’t I even manage to do this one thing?”

The faulty premise behind this thinking is that we have complete control over our symptoms, and that it’s just a matter of finding the magic combination of treatments to end flare-ups, when, in reality most of self-management strategies relieve illness symptoms, but don’t end them. Fear of losing control, and the difficult emotions of frustration, disappointment, and guilt, drive us to try harder to get it right, to get it perfect (Moinar, et al., 2016). However, what you really need to do is give yourself a break. You can’t have 100% control over the flux of your symptoms. Contrary to the voice of your inner perfectionist, it’s sometimes better to go with the flow of illness, than paddle upstream.

What is perfectionism?

Perfectionism is defined as a personality trait characterized by a drive for flawlessness, excessive self-scrutiny, and harsh self-criticism over mistakes (Linnett & Kibowski, 2018). According to researchers, there are three types of perfectionism: self-oriented, socially prescribed, and other-oriented (Flett et al., 2011). Let’s take a look at what each of these mean in turn. 

  • Self-oriented perfectionism: setting unrealistically high standards and criticizing oneself harshly when those standards are not met. 
  • Socially-prescribed perfectionism: when important others (family, friends, society as a whole) are holding the affected individual to excessively high standards. 
  • Other-oriented perfectionism: refers to the perfectionist’s judgment of others as she holds them to her exacting demands.

Self-oriented perfectionism means that you set unachievable standards for yourself, and then berate yourself for failing to live up to them. In comparison to your pre-illness abilities, you may now criticize yourself for struggling to do basic things like doing the laundry, making the bed, cooking dinner, or meeting a friend for coffee. Before illness, you may have had ambitions to be great at whatever it was you loved doing. Perhaps you drove yourself hard in pursuit of those goals. And then along the way, you got sick. You may now blame yourself for becoming ill, seeing it as a failure. Some judge themselves harshly for not succeeding at living up to their pre-illness potential, for seeing what they can accomplish while ill as paltry in comparison. I’ve even heard others blame themselves for being such perfectionists in the past that they drove themselves into the ground, believing that their perfectionism exacerbated or caused their illness. Meanwhile, such blame only perpetuated the cycle of toxic perfectionism!

Socially prescribed perfectionism means that important people in our lives, or society at large, are holding us to unrealistic standards. People with chronic illness are all too familiar with the toxic positivity evangelists who healthsplain that all you need is the right attitude and you will be cured.

 There is a huge amount of social pressure to seem ‘fine’ and end conversations on a positive note, regardless of reality. The pressure to put on a mask and pretend that everything is fine can be overwhelming.

Socially prescribed perfectionism is the mask you feel you have to wear outside of your inner circle. But sometimes, we impose this mask onto ourselves, when we could admit we’re not ok, and ask for help. In those situations, socially prescribed perfectionism gets in the way, because we want to been seen by ourselves, and others, as holding it perfectly together.

Other-oriented perfectionism is less relevant to individuals with chronic illness, since this involves holding other people to our high standards. However there can be a disappointing reaction among some people in the chronic illness community to an individual expressing their no-end-in-sight distress. The “But have you tried…” response piles judgement on someone who is suffering. Even worse is the “But I cured myself doing…”. Expressing sympathy means acknowledging that each person’s situation is unique, and accepting others where they are at, instead of lecturing them on not trying hard enough.

How can you break free of toxic perfectionism?

 Befriend yourself. Treat yourself with the understanding and kindness of a good friend. “What would a best friend say?” is something you can ask yourself when you’re feeling anxious, guilty, critical, frustrated, or ashamed.

“You’re only human.”

“You’ll find your way through this.”

 “This isn’t your fault.”

 “You can always try again tomorrow.”

“Maybe this is just beyond your control right now.”

“What’s the best thing you can do for yourself right now.”

You can take a 5 minute break somewhere quiet, take a few deep breaths, and repeat to yourself, or write out, what you would tell a friend. It may feel very cheesy, but it’s worth it to stop the self-blame around managing your illness! There needs to be a mental counterpoint to the damaging words of your inner perfectionist.

 For a more formal practice, there are self-compassion mindfulness meditations (loving-kindness meditations) that you can do, in which you repeat silently to yourself goodwill wishes for your own well-being: “May I be safe, May I be peaceful, May I embody self-kindness, May I live fully,” are the ones that resonate with me. Here are some more resources if you struggle with your inner perfectionist:

Tara Brach, Radical Acceptance: Embracing your life with the heart of the Buddha.

Kristin Neff, Self-Compassion: The proven power of being kind yourself.

Christopher Germer, The Mindful to Self-Compassion.

Originally published in the UK Fibromyalgia magazine

Works Cited

Flett, G.L, Baricza, C., Gupta, A., Hewitt, P.L., & Endler, N.S. (2011).  Perfectionism, psychosocial impact and coping with irritable bowel disease:  A study of patients with Crohn’s disease and ulcerative colitis.  Journal of Health Psychology, 16(4), 561-71.  

Friis, A.M., Johnson, M.H., Cutfield, R.G., & Consedine, N.S. (2016).  Kindness matters:  A randomized controlled trial of a mindful self-compassion intervention improves depression, distress, and HbA1c among patients with diabetes.  Diabetes Care, 39(11), 1963-71. 

Linnett, R. J., & Kibowski, F. (2018, June 22). A closer look at multidimensional perfectionism and multidimensional self-compassion. https://doi.org/10.31234/osf.io/bcu37 

Molnar, D.S., Sirois, F.M., & Methot-Jones, T. (2016).  Trying to be perfect in an imperfect world:  Examining the role of perfectionism in the context of chronic illness.  In F.M. Sirois & D.S. Molnar (Eds.), Perfectionism, Health, and Well-Being, pp. 69-99.  Switzerland:  Springer International Publishing.

Willard, K. (2019, June 17). Perfectionism and Chronic Illness. Psychology Today. Retrieved from: https://www.psychologytoday.com/ca/blog/chronically-me/201906/perfectionism-and-chronic-illness

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

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

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

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

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

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

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

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

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

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

Does TV Rot Your Brain?

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

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

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

Can TV Watching Reduce Stress?

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

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

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

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

This post was originally published in the Uk Fibromyalgia Magazine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Winter Solstice a.k.a Longest Night: A Time to Reflect And Remember that The Light Always Returns

During Winter Solstice, we experience the shortest day, and the longest night, of the year. On this day, usually December 21st or 22nd, the sun travels on its shortest path through the sky. This occurs because the Earth rotates on a tilted axis, and winter solstice marks the time when the Northern hemisphere is tilted furthest away from the sun.

Yet, the Winter Solstice was, and is, celebrated, because, after the longest night of the year, the light begins to return, as each day becomes incrementally longer, and the Earth tilts back to towards the sun. Light is a feature of many mid-winter festivities during the long dark nights at this time of year.

If you are lucky, you can sit around a crackling fire with your family, or perhaps attempt to recreate that cozy experience by playing a fire video on your TV. In Scandinavia, a ‘yule’ log is burned in the hearth at Christmas, based on a pagan Winter Solstice tradition in which families burned logs from a specially selected tree to encourage the Sun to return once again. (Think “Deck the halls with boughs of ivy, falalala lalala/ Troll the ancient yuletide carols, falalala lalala/ See the blazing yule before us…”).

Driving or walking past houses decked out in strands of twinkling lights a crisp December evening is always uplifting. My favourite tradition is to decorate our Christmas tree with strands of lights, and watch the light reflect off of ornaments collected over the years. The tree seems to represent a bright promise that the light always returns. Evergreen represents a promise that new growth, beginnings, and renewal will return, even when everything appears to be bare and dormant.

Light as a symbol of hope is a feature of many worldwide religious festivities that occur during the late fall/winter holiday season, although the specific religions meanings vary, from lighting the menorah during Hanukkah, to lighting Advent candles on Sundays leading up to Christmas, to lighting a kinara for Kwanzaa. Personally, I like to light scented candles during the holidays because the flickering flames create a special atmosphere of warmth and cozy-ness that make home feel like a refuge from the cold, dark night outside.  

Winter solstice can be a time of reflection. In the dormancy and darkness winter represents, before the growth and activity of the warmer months, we can turn inwards, integrate the lessons learned over the past year into our sense of self and visualize where we want to go next. When the sun returns, we will be ready for new beginnings and renewal.

This year, despite omicron, chronic illness, and personal challenges, remember that the winter always gives way to spring, and the light always returns. Embrace hope! From our family to yours, Happy Holidays!

Medical & Emotional Gaslighting: How to Identify This Damaging Manipulation And Heal From It

Gaslighting is a form of manipulation, designed to undermine your confidence and self-esteem. It can happen at the doctor’s office, at home, at work, or anywhere else. People who employ these techniques play on emotions like shame, fear and guilt, until you question everything about yourself.

  Psychologists use the term “gaslighting” to refer to a specific type of manipulation. “Gaslighting is a technique that undermines a person’s perception of reality. When someone is gaslighting you, you may second-guess yourself, your memories, and your perceptions. After communicating with the person gaslighting you, you may be left feeling dazed and wondering if there is something wrong with you.” Unlike a direct insult (which is still very hurtful), gaslighting sneaks in through the backdoor. It’s pure manipulation. It’s also emotional abuse.

Gaslighting Technique 1: Shaming

A primary tactic of gaslighting is to make you feel that your emotions and reactions are always somehow wrong. If you try to defend yourself, you are too sensitive and/or overdramatic. If you try to set boundaries, you are selfish and mean. If you don’t do what is asked of you quickly enough, you are lazy and incompetent. If you go out with other friends, you are too much of a people pleaser. If you don’t tough out a difficult situation, you’re weak.

Similarly, this is the doctor telling you that the medical treatment doesn’t work because you’re too emotional, or because you’re a ‘head case’. Medical gaslighting — “the repeated denial of someone’s reality in an attempt to invalidate or dismiss them” — is a form of emotional abuse. When a medical professional leads a person to question their sanity, they undermine the patient’s trust in their own body.

Women are often told their severe pain is just “normal period pain,” a weight problem, or something a Tylenol will fix. A study in the Journal of Law, Medicine & Ethics “indicated that women… are significantly more likely than men to be ‘undertreated’ for pain by doctors.” Medical gaslighting occurs because pain is often dismissed as “all in your head” (being crazy) and caused solely by psychological problems, despite evidence to the contrary. However, it’s clear that stress and mental health challenges can exacerbate pain. This makes it all the more imperative to address sources of toxic energy in your life, like manipulative behavior by your doctors or loved ones.

Gaslighting criticisms are usually arbitrary, with one thing being fine one week and a crime the next. You have a constant feeling of walking on eggshells, which makes you more vulnerable, and easier to manipulate. As an example, when I was 16, my grandmother died. A few days later, I was having a crying spell, when a gaslight-er in my life said “Are you being melodramatic in order to get attention or something? It’s not like you were even close.” It’s wrong to tell someone their grief is ‘melodramamatic’, to respond with dismissal instead of comfort. But it is also an insidious way to make someone grieving doubt their own feelings, and wonder if they are being ‘over the top’ and attention-seeking. You may have experienced something similar if anyone has told you not to be upset after your diagnosis because your illness isn’t terminal, or other people have it worse.

In another situation, I asked the manipulat-er for privacy to have a conversation with a visiting friend, who was upset after a break-up. Unbeknown to me, this was interpreted as a personal rejection. Later, I found a typed story on my pillow about how I was the world’s meanest mean girl, conspiring with my heartbroken friend to exclude the manipulat-er! I wasn’t able to laugh it off completely, because of that insidious doubt that this person was right.

In this loony-tune land you begin to question your initial reactions (“of course I am not like that!). You get worn down until you wonder whether you really are all if these terrible things. Shame is a deep emotion that can be played on effectively.

Gaslighting Technique 2: Isolation and Rejection

Secondly, manipulat-ers seek to ‘isolate’ and ‘reject’ the targets of their activities. In a medical context, for example, I have had a doctor undermine all other medical advice I’d received up till that point: “You can’t trust what that guy says.” And if you assert that the previous treatments were helpful? “That was just in your head.” You start to doubt yourself, the medical team around you, and even what your body is telling you.

In a personal context, the gaslighter tries to intervene in other close relationships. When I was in a serious romantic relationship, this person insisted my new long-distance boyfriend- he didn’t really love me. When I planned to visit him, the gaslight-er insisted I shouldn’t go. In fact, they threatened, “if you do go, you will be flushing our relationship down the toilet forever.” Your closeness to others may be seen as a threat to them, or they may try to recruit allies to their “side” by intervening in your relationships with other family or friends.

Creating doubts about the care or love of everyone else in your life keeps you dependent on this one person. Threatening abandonment if you don’t comply keeps you in line. A doctor might threaten to cut you off from essential treatments if you don’t endorse their diagnosis or approach. A specialist once told me “It’s fine if you want to question me, I will still allow your treatment to continue- for now.”

In childhood, a parallel would be to threaten a child that, if they don’t behave, they will be left behind alone in the park, and then turn and walk away from them. Fear is a crucial part of the gaslighting trifecta. After all, evolutionarily, being abandoned by your clan was an existential threat, and that’s still how it feels today. You’ll do almost anything to prevent that outcome.

Gaslighting Technique 3: Guilt Trip

I had an excruciating nerve block procedure done last summer. At one point, I was in so much pain that I cried out and said “This is too much.” The doctor stopped and said, “I’m not even doing anything right now. What more do you want from me? I already got you everything you claimed you needed to be comfortable, the head rest, and the extra pillows.” Implication: you are being a difficult patient; your “needs” are over the top, I’ve already done so much for you, and to ask for more is just crazy. No compassion, no communication. (TW- threats of suicide in paragraph below).

Guilt in personal relationships can take many forms, from mild rebuke to intense criticism. It becomes abusive when it is used as a form of control. For example, “You didn’t load the dishwasher, so you must hate me’. Your initial reaction is to run towards this person to try and prove your loyalty and affection (“No, of course I love you! I’m so sorry, I’ll load the dishwasher right now!).

It can escalate to extreme forms of manipulation. Having a loved one call you to say “I’m just letting you know that I’m going to kill myself, not that you’ll care” is an emotional gut punch. When this happened to me, I was initially overwhelmed with panic for the safety of this individual (in fact it triggered my very first panic attack). This is an extreme example, but it highlights very clearly the art of the guilt trip.  This person had cast themselves as a victim (driven to suicide), and myself as the perpetrator ( a heartless ice queen), when actually it was the other way around. I realized years later that my love for this individual had been weaponized against me.

Over time, you take it into your soul that you are cold-hearted, and unloving, since this is apparently how you make your loved ones feel. And that’s what they want, because now you are hooked by your own guilt and desire to try to secure the relationship. 

Healing From Gaslighting

The rational tools of relationship problem solving – compromise, taking cooling off time outs, or agreeing to disagree, just don’t work in this environment. Everything becomes twisted. You start a conversation about how communication needs to change and end up reassuring the other person that you do love them and will try to visit more. Facts are cross-examined: “Get your story straight!” Efforts to clarify are diverted by provocative or hurtful comments to bait you off course. Up is down and left is right. Every encounter will be subject to revisionist history, and there will be no ‘agree to disagree’.

Ultimately, you have to give up on coming to a shared understanding. Often, trying to win the argument and prove your point is futile. You have to believe in yourself first and foremost. So what can do if you think you are being gaslighted?

When you start to feel confused, or uncertain, it’s likely the gaslighting is underway. This is a good time to change the subject, say no, or just go.

Be self-compassionate. Give yourself the love and security that you long for. In any situation, ask “what would I tell my best friend if they were in this position?” and then tell that to yourself. Practice loving kindness meditation.

You have the power to say you don’t want to continue a conversation, and get up to leave. You have the power to say no, to whatever is being asked of you.

It’s important to keep track of the patterns in these relationships. Keep a journal, voice notes, or tell a close friend. You may notice that gaslighting increases when you gain a little bit of independence or assert yourself. Since these episodes will be revised out of the official account kept by your gaslight-er, it’s very helpful to have your own record. This helps you stay firmly planted in reality and not get twisted around in future encounters.

Finally, talk to a therapist! It does wonders for your ability to see through manipulation and empower and protect yourself.

How To Respond To Gaslighting

When it comes to what you can say when you sense gaslighting, here are a few recommendations:

“I notice you don’t accept my viewpoint on this as being equally valid to yours. Please don’t dismiss my interpretation like that; I’m not imagining things.”

“You clearly feel strongly about this, as do I. My emotions are my emotions, and I don’t need to justify them.”

“I respect your right to have your own perspective. Please grant me the same. I think we need to agree to disagree on this.”

“We both deserve to be treated respectfully. Since that isn’t happening, I am going to take a break from this conversation.”

“I’m not going to respond to that.”

“Like I told you, I’m not going to discuss this topic again. I need to go.”

And then leave. Protect your heart. You deserve it.

A list of international emergency and suicide hotlines:https://www.opencounseling.com/suicide-hotlines

‘Psychology Not Pills’: The Truth Behind Recent Headlines Claiming That ‘Therapy Can Nix Chronic Pain’

The health headlines were all abuzz this week about a new study on chronic pain out of Boulder, Colorado. The headline for the article I first read was: ‘How therapy, not pills, can nix chronic pain.‘ As a patient, and a health writer, I’m frustrated to read headlines that perpetuate a narrative that chronic pain is a psychological problem that is “all in the head.” However, I resolved to stay open to the conclusions drawn from the study.

What did the study actually say?

Pain Reprocessing Therapy (PRT) claims to shift your beliefs about the cause and threat value of chronic pain, by framing pain as a “false alarm” rather than something dangerous. By helping patients to reconceptualize their pain as a “reversible, brain-generated phenomenon,” not ongoing physical damage, the study authors concluded that PRT provides significant, durable pain relief.

A small sample of 151 individuals with low-moderate back pain were divided into three groups: a treatment group, a placebo group, and a group who received the “usual care” for back pain. The treatment group received eight one-hour sessions of a new type of therapy called Pain Reprocessing Therapy (PRT) over four-weeks. All three groups reported their pain levels at the end of the study. In addition, the researchers used fMRI imaging to determine if the therapy had changed brain activity in participants when they evoked back pain in the laboratory.

In the treatment group, 66% of participants reported being pain-free or nearly pain-free at the end of the study, compared to 20% of participants in the placebo group, and 10% in the usual care group. Even one year later, fMRI imaging showed that participants in the treatment group had a lower prefrontal cortex response to evoked back pain than the other two groups, although the meaning of this finding was unclear.

What does this study not say?

The study proves that, in a small sample of people with mild back pain, PRT reduced pain. It opens the door to further investigation on how pain perceptions held by individuals with low back pain affect pain intensity, and how learning to reappraise pain sensations as safe may help reduce pain levels. However, this is a far cry from the ‘revolution in how we understand and treat all forms of chronic pain’ that articles reporting on the study proclaim! We would need a sample size of thousands, in different settings, to confirm the findings that PRT can reduce mild low back pain. Furthermore, it is impossible to draw conclusions about how PRT would work for people with different pain conditions, like fibromyalgia, until a study is repeated in those populations.

Psychology and Pain

In some cases, chronic pain is a disorder of the pain processing system itself: sensitized nerve endings send pain signals, which are prioritized and amplified in the spinal cord, and finally interpreted as a significant, dangerous threat in the brain. Rather than “all in the head”, we can consider this type of pain to be “all in the brain and central nervous system” (far less catchy, I’m afraid). This is in contrast to conditions like arthritis, which are caused by inflammation in physical tissues like joints.

To my knowledge, no research exists showing a mechanism of action for how thoughts and emotions of the mind can control or terminate central nervous system neurons firing pain signals. The authors of this PRT study argue that other psychological pain interventions, like cognitive behavioural therapy or mindfulness, teach patients to improve their daily functioning despite pain, by learning to be less reactive to pain signals. In contrast, Pain Reprocessing Therapy, apparently teaches conscious strategies to reduce and down-regulate pain signals directly. This study shows a correlation (PRT correlates with pain reduction), and the brain imaging results were inconclusive. That is a far cry from proof of the researchers’ theory about how PRT works, showing  direct causal evidence that RPT dials down pain signals.

There are limitations to the role the brain plays in perpetuating chronic pain. For example, fibromyalgia, was, up until recently, thought to have been 100% caused by central nervous system sensitization. However, now a new body research shows fibromyalgia is also a disease of the body, including small fiber neuropathy, and immune dysregulation. Therefore, I think the claim that pain is an entirely “reversible brain-generated phenomenon” is a stretch too far.

In the past, claims that pain conditions were psychological in origin were used to discredit and disbelieve patients, particularly women.  Even though the “all in your head” narrative has been weaponized to discredit pain patients, we have to stay open to the possibility that PRT may be one tool, among many, in a chronic pain management toolkit. None of these treatments, like psychology or medication, need to be ‘either/or’. Responsible health writing plays a role in shaping these narratives.

The health headline for a medical news website stated ‘Psychology, not Pills Provide Long-lasting Pain Relief’, setting it up as one or the other, whereas the research article had the much tamer name `Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial` (albeit, in a psychiatry journal). As someone with a health condition, it’s important to notice the bias in reporting, and how that shapes the headline and article. For example, I found a reasonable headline reporting on the PRT study which says “Chronic pain treatment should include psychological interventions.” For tips on how to find credible health information, and avoid misinformation and conflicts of interest, these are some helpful tips.

Ashar YK, Gordon A, Schubiner H, et al. Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial. JAMA Psychiatry. Published online September 29, 2021. doi:10.1001/jamapsychiatry.2021.2669

Full-Spectrum Effect: New Study Shows Cannabis Terpenes Provide Pain Relief Alongside THC

A new study shows that terpenes, which cause that skunky cannabis smell, might be good for pain relief. The pungent smell and taste of cannabis is caused by aromatic compounds called terpenes (essential oils are also rich in terpenes, which causes their unique scents). Terpenes are distinct from cannabinoid compounds like THC or CBD. Researchers at the University of Arizona Health Sciences studied the pain relieving effect of 4 cannabis terpenes, used individually, and in combination with a synthetic cannabinoid agonist, which stimulates the body’s natural cannabinoid receptors.

This study found that when the terpenes were given along with the synthetic cannabinoid agonist, they amplified its pain relieving effect. Scientists were interested in the hypothesis of an entourage effect, which suggests that terpenes work synergistically with cannabinoids like THC and CBD to boost the pain relieving efficacy of cannabis. Cannabinoids bind to cannabinoid receptors, which stimulate nerve signals, that in turn trigger physiological changes, including dialing down pain sensitivity.

Interestingly, when the terpenes were isolated and given individually, they mimicked the effect of cannabinoids! All four terpenes activated cannabinoid receptors, which usually bind to THC. In fact, other plant compounds have been found to act on cannabinoid receptors, and these compounds are said to be cannabimimetic. “Cannabimimetic [compounds], can… play a role in immune-mediated inflammatory and infectious diseases, neuroinflammatory, neurological, and neurodegenerative diseases, as well as in cancer, and autoimmunity.”**

This recent study adds support to the entourage effect theory. It builds on previous research, which has has shown that terpenes also have anti-inflammatory properties. If you use cannabis for pain, look for “full spectrum” extracts, oils, edibles or vape cartridges because these include terpenes. Sometimes terpenes are removed from extracts to eliminate the skunky aroma/taste. Of course, if you smoke or use a vaporizer, the original bud is naturally full-spectrum.

Reference:

LaVigne, J.E., et al. (2021) Cannabis sativa terpenes are cannabimimetic and selectively enhance cannabinoid activity. Scientific Reports.

*https://www.news-medical.net/amp/news/20210714/Research-finds-Cannabis-terpenes-as-a-promising-new-target-for-pain-therapies.aspx

**https://doi.org/10.3390/molecules25071567

What I Wish I’d Known About Flares and Hormones: How Tracking Your Period Can Reduce Pain, Strains, and Injuries

Muscle and joint pain are a debilitating part of chronic illnesses like fibromyalgia, arthritis, and M.E., among others. Ridiculously ordinary activities can trigger muscle and joint strains and injuries in people with chronic illness, but have no effect on healthy individuals. I recently went to physiotherapy with neck and upper back pain. I could feel the ropey muscle spasm and trigger knots causing the pain, which just wasn’t resolving. My physiotherapist asked whether I had been taking any hormones, and I was surprised by the question, because it just so happened that I was. I decided to do some research, and what I found frustrated me. How was it that after years of seeing doctors and researching online, no one had explained the connection between the menstrual cycle and muscular pain to me? This is the beginning of a series on hormones and flare ups that I hope will make this information, buried in scientific journals, more widely available.

We know that, in general, women experience significantly more pain and injury than men, particularly mid-menstrual cycle, around the time of ovulation, when estrogen is high. One study found that the risk of muscle and tendon injury in women athletes is almost twice as high around ovulation than at other times in the menstrual cycle.[1] These injuries included “muscle ruptures, tears, strains, and cramps, as well as tendon injuries and ruptures.”[2] Other studies have shown that women experience more anterior (front) knee pain, ACL injuries (torn knee ligaments), and plantar fasciitis foot pain around ovulation.[3]

But why?

The surprising answer may lie in the impact of ovarian hormones like estrogen. During ovulation, when estrogen peaks, the elasticity of ligaments, tendons, and muscular tissue increases, heightening the risk of strain, pain, and injury.[4]

Estrogen & Your Monthly Cycle: Back to Health Class

Estrogen is a sex hormone most well-known for regulating the menstrual cycle, although it also has many other functions in the body too. Hormones enable communication between different parts of the body.  When hormones are released, they work like keys that fit into receptors on cells, activating or deactivating specific functions.

Let’s go back to high school health class. Your menstrual cycle begins on the first day of your period. Once your period is over, the ovaries begin to produce eggs in small sacs called follicles. The first part of your period, called the follicular phase, lasts about two weeks on average. Estrogen is released from your ovaries, and this stimulates the lining of the uterus to thicken. Estrogen peaks at the end of the follicular phase, triggering a process that results in ovulation, when one mature egg bursts through its follicle.

During the second half of your cycle, called the luteal phase, which lasts about two weeks, estrogen levels are much lower. If the egg does not become fertilized, then this eventually triggers the uterine lining to shed, which is the beginning of your next period, and the start of a new cycle.

The bottom line – estrogen rises during the first half of your cycle, peaking prior to ovulation, and then falls in the second half of your cycle.

Estrogen, Muscles And Connective Tissue

But estrogen also plays an important role in other parts of the body, including connective tissue like muscles, ligaments, fascia, and tendons. The latest research shows that there are estrogen receptors on these connective tissues.[5] Rising or falling estrogen levels communicate messages to these tissues, triggering changes in their form and function.

During ovulation, when estrogen peaks, the elasticity of ligaments, tendons, and muscular tissue increases.[6] This is also true in pregnancy, when the elasticity of your connective tissues increase in order to expand and make space for a growing fetus.[7] When the connective tissue becomes more elastic, it makes joints like the knee, SI joint, and ankle unstable, increasing the risk for injury.[8]

In contrast, when estrogen levels are low, immediately before and during your period (late luteal and early follicular phase), connective tissues become stiffer and more rigid. In turn, joints are stabilized, reducing the risk for injury. Researchers suggest that some biomechanical pain may improve when estrogen is low and connective tissues are less elastic, stabilizing joints .[9] Women who take the pill appear to have fewer injuries, and more consistent pain levels because their hormones do not fluctuate to the same degree.[10]

 Fascia, which is a network of connective tissue made mostly of collagen, encases muscles, organs, nerves, and blood vessels, holding them in place. We know that inflammation of the fascia surrounding muscle tissue may drive fibromyalgia pain,[11] and also, possibly, myofascial (muscle and fascial) pain in other chronic illnesses. Fascia also contains estrogen receptors.

When estrogen is high, the consistency of the fascial collagen changes, becoming more elastic, and stiffens when estrogen is low.[12] Researchers explain that “hormonal imbalance damages myfascial tissue, leading to drastic changes in its constitution in collagen and elastic fibers, and thus modifying its biomechanical properties.”[13]  In other words, hormone imbalances may play a role in chronic pain in muscles and connective tissue. It is possible that imbalances in hormones like estrogen may contribute to myofascial pain and injury in women with fibromyalgia and other illnesses. More research is needed to determine the effect of hormone imbalances on myofascial pain.

But even if you do not have a hormone imbalance, the increased elasticity of your muscles and connective tissues mid-cycle can increase your flares.

Track Your Period To Reduce Your Strains, Pains, and Injuries

Tracking your period may help you to understand how your cycle impacts flares of muscle and joint pain, strain, and injury. Over the course of several months, you may notice that your bad knee, low back ache, foot pain, wrist pain and other overuse strains, which chronic illness amplifies, cluster around ovulation. If true, avoiding significant activities around this time, or pacing yourself more, could help to reduce pain related to strains, overuse, hypermobility, poor posture, and injury (biomechanical pain)..

A few days after you ovulate may be the perfect time for a physiotherapy (physical therapy) appointment or massage, to treat ovultion related flares. Since knowledge is power, the more you can learn about which variables most affect your pain and strain levels can put you in the driver’s seat for managing more effectively. Tracking your period and ovulation might be the first step.

There are many period tracker apps that can help you to log your cycle. To work out the length of your menstrual cycle, record the first day you start bleeding (first day of your period). This is day 1. The last day of your cycle is the day before your next period begins. Pinpointing ovulation is a bit harder. If your average menstrual cycle is 28 days, you ovulate around day 14. But this varies significantly from woman to woman and even cycle to cycle.

You can use an ovulation calculator like this one to roughly figure out when you ovulate, which is usually 14 days before your period begins. Recording body changes, like temperature, that fluctuate through the month, can be used to predict ovulation. Or, you can purchase ovulation predictor kits at the drugstore that include urine test sticks to pinpoint ovulation. Learning more about your body and how it works is an empowering step women can take to manage their health.

Works Cited

Fede, C. e. (2019). Sensitivity of fasciae to sex hormone levels. PLoS One , 14 (9).

Liptan, G. e. (2010). Fascia: a missing link in our understanding of the pathology of fibromyalgia. Journal of Bodywork Movement Therapy , 14 (one), 3 – 12.

Marcus, J. (2021, April 5). How tracking your period can lower your injury risk. Retrieved April 20, 2021, from Runners World: https://www.runnersworld.com/health-injuries/a35994126/period-tracker-for-runners/

Petrofsky, J. (2016, April). Influence of estrogen on the plantar fascia. Retrieved April 24, 2021, from Lower Extremity Review: https://lermagazine.com/article/influence-of-estrogen-on-the-plantar-fascia#.YIb71wXgmGI.mailto


[1] (Marcus, 2021)

[2] (Marcus, 2021)

[3] (Petrofsky, 2016)

[4] (Fede, 2019) (Petrofsky, 2016)

[5] (Fede, 2019)

[6] (Fede, 2019) (Petrofsky, 2016)

[7] (Fede, 2019)

[8] (Petrofsky, 2016)

[9] (Fede, 2019)

[10] (Petrofsky, 2016)

[11] (Liptan, 2010)

[12] (Fede, 2019)

[13] (Fede, 2019, p. 8)

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

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

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

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

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

What’s your fatigue flavour today?

#Fibro #ChronicPain #NEISvoid

How To Find Meaning Again When Chronic Pain Upends Your Life

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

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

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

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

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

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

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

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

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

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

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

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