This little one joined our family three months ago. Twelve joyful, exhausting, funny, and wonder-filled weeks learning about our daughter, and learning to be parents. We’ve changed one zillion diapers, cried several times over how grateful we feel for this miraculous baby, cried several more times from fatigue, and found one cucumber put back in the cutlery drawer (?).
We tried for over six years to get pregnant, but infertility added to fibromyalgia made this a struggle. I faced challenges ranging from having a laparoscopy for endometriosis, to tapering down my pain medication. The pregnancy itself was surprising- easier in some ways than I’d expected, and harder in others. And now, motherhood with fibromyalgia…
Her magical blue eyes opening wide, the first sign of recognition sparkling in them, her first enormous gummy smiles, her squeals, excited arm flapping and kicking all make me hold my breath, trying to do nothing but enjoy each moment. When she was born, I knew my heart now resided outside of my body, with our little bear.
Being a new mom is also terrifying in the way that new love can be when you realize that your new bond makes you responsible and vulnerable to another person. This is enhanced as a parent, because there’s no back-up coming- you’re it! At six weeks her pediatrician diagnosed her with reflux and possible cow milk protein allergy. Whenever our little one squirms in discomfort, I feel her misery viscerally. Being in charge of making her feel better is overwhelming at times. In fact, learning that you can’t fix everything is a parenting lesson I have a feeling I’ll be re-learning over and over as she grows.
I’m only 12 weeks into this journey, and there is far more that I don’t know than what I do. But I already know it’s different to be a parent with fibro. How do you pace with a newborn? How can you feed or carry her without worsening neck or back pain? How do you manage those internalized expectations about being “supermom” when you have a medical condition? I’ve found it difficult to find stories of shared experiences about parenting a newborn with chronic illness. So, between the cycles of feeding, naptime, and play, I hope I can share some of the challenges and joys of navigating this adventure as a new mom with fibromyalgia.
We were so happy and excited when the pregnancy test turned positive last January. I made my husband go out and buy three more tests, just to quadruple check. We had been trying for a long time, and this seemed like a New Year’s miracle. It still does, and I’m incredibly grateful and excited!
Sitting here at 9 months pregnant and reflecting on my experiences so far, I am reminded about how individual our symptoms of illness are, and how this must be true for pregnancy too. However, I hope describing my own experience offers some insights that might be useful for others. When I first tried to find online information or shared experiences in blogs or social media. I didn’t find much. It can be a frustrating and lonely journey sometimes. Needless to say, OBs don’t know much about chronic pain or illness!
How will my illness affect my pregnancy? How will my pregnancy affect my illness? These questions are difficult to answer with certainty. I was very frustrated before I became pregnant that nobody was able to tell me for sure what it might be like, and I felt like I couldn’t prepare properly. Part of the reason that it is hard to answer this question is because pregnancy sometimes alleviates illness symptoms, while other times it makes them more intense. In either situation, however, pregnancy outcomes appear to be normal for women with fibromyalgia.
Pregnancy can improve some illness symptoms! For example, as a result of the protective effect of pregnancy hormones, some people with autoimmune conditions report symptom remission during pregnancy. “During pregnancy your body is less immunosuppressive because it’s making sure not to reject the fetus,” says Dr. El-Chaar. Dr. Howard Sharp, an OB-GYN at the University of Utah Health Sciences Center, where he heads the Pelvic Pain Clinic, explains, “The immune system kind of goes on holiday during pregnancy, which is beneficial to patients,” and so, some women may find their fibromyalgia symptoms actually improve during pregnancy.
Improving symptoms has been my experience for several specific symptoms. For the first time in years, I am able to do what my husband does so irritatingly well: fall asleep as soon as my head hits the pillow. (I also bought a magic adjustable bed base, but more on that in a future post!). For me, sleep has been surprisingly good, even at this late stage when I am more uncomfortable with the pregnancy.
My right knee has been problematic for several years (“patellafemoral syndrome”) and often swells if I over-do things, making me limp. However, I haven’t limped since I became pregnant, despite my increasing weight.
I normally experience pelvic pain, from endometriosis and ilioinguinal neuralgia. This pain has been so much better, maybe from the absence of menstruation, which is a relief.
Overall, my musculoskeletal pain is probably similar to my pre-pregnancy baseline, but it’s different now. Instead of the neck and upper back pain that used to plague me, now I have shin splints and mid-back achiness. My SI joint is easily aggravated, as usual, but my usual glute pain doesn’t bother me. Seeing a pelvic physiotherapist has been incredibly helpful for managing my SI joint pain, and preventing pelvic pain associated with pregnancy
On the other hand, pregnancy has made my other fibromyalgia symptoms worse. My fatigue is substantially higher, especially in the first and third trimester. I need to alternate 2-3 hours of wakefulness with an hour of rest in order to be semi-functional during the morning or afternoon. I now take 2-3 naps instead of 1 per day.
Correspondingly, my brain fog is much foggier, especially around planning, remembering tasks, and follow-through. Entire conversations are sometimes deleted from my mental hard-drive! I also think that I’m more easily overwhelmed by sensory stimulus or chaotic environments.
I have GERD (acid reflux), which overlaps with fibromyalgia. It’s worse in pregnancy, of course, but I also found that it made my nausea and food aversions in the first trimester really terrible. I ended up losing 13 lbs overall! Take nausea and reflux seriously, and get treatment if you are losing weight or it is not bearable. My digestive system got in on the fun as well (all I will say about that is take your fibre and probiotic religiously).
Internal temperature regulation is even more screwy for me, during pregnancy, than usual. I overheat, feel sweaty or clammy, or get chills all the time, and frequent outfit changes seem to be a part of my daily life. I made my maternity outfits more affordable by only shopping at sites like Old Navy or H&M.
Overall, my musculoskeletal pain is probably similar to my pre-pregnancy baseline, but it’s different now. Instead of the neck and upper back pain that used to plague me, now I have shin splints and mid-back achiness. My SI joint is easily aggravated, as usual, but my usual glute pain doesn’t bother me. Seeing a pelvic physiotherapist has been incredibly helpful for managing my SI joint pain, and preventing pelvic pain associated with pregnancy.
My overall functioning is reduced, and I’m more dependent on my husband now. I find standing still to be very uncomfortable (walking is better), so this makes cooking or shopping impossible. We order everything via delivery instead of shopping, and my husband was prepared to do most of housework, which really helps. I was able to walk about 3500 steps per day, and now I’m down to about 1500.
I have fun new pregnancy symptoms like nosebleeds (bring tissues everywhere!), bleeding gums, dizziness (always hydrate!), leg cramps, and swelling, which are a pain to manage on top of all the rest.
I am not alone in experiencing some worsening symptoms. One study[i] found that pregnant women with fibromyalgia experienced worsening:
Pain, especially in the low back, chest, abdomen, and legs
Top TIps for Managing Fibromyalgia Symptoms During Pregnancy
In the big picture, I am so grateful for the new life growing inside of me. Feeling her move and grow brings me so much joy. However, pregnancy is also a time of stress. It can be overwhelming and draining to handle day after day. That is so much more true for people with a chronic illness.[ii] I’ve become more hyper-vigilant about my symptoms, because there is more to manage, and that is an extra burden. It’s a relief when we can take the pressure off of ourselves to always feel blissed out on pregnancy hormones, happy and expectant, and instead acknowledge that growing a new life is hard work, especially when you have an illness! Returning to the reason I’m going through this, the love I feel for this little one, helps me keep going on tough days. On the whole, I have to say that pregnancy has been much more bearable than I was worried it would be. I was prepared to be essentially bedridden, but instead I’ve been able to keep up with planning and preparing for our baby, and even doing a bit or writing here and there! It makes me feel more positive about my body, and the amazing things it is able to do.
Here are my top tips for managing symptoms during pregnancy:
physiotherapy/ physical therapy, especially pelvic if possible
Biofreeze topical menthol rub or menthol patches
gentle movement like walking or stretching (I have modified my stretches to do in a chair or the bed as opposed to on the floor, which is too uncomfortable for me)
proper supports for sitting, like a back rest or office chair
braces like a belly band or SI joint brace for activity
sleeping with supportive pillows or adjustable bed base (I find being in a semi-upright reclining position most comfortable, others use body pillows or wedge pillows)
advocate for needed medication
For more information on how to prepare for and manage a chronic illness during pregnancy, here is an excellent guide from the March of Dimes. If you are interested in learning more about fibromyalgia and pregnancy, start here or here.
[i] Genç, H., Atasever, M., Duyur Çakit, B., Seval, M., & Koç, A. (2017). The Effects of Fibromyalgia Syndrome on Physical Function and Psychological Status of Pregnant Females. Archives of rheumatology, 32(2), 129–140.
[ii] Tyer-Viola, L. A., & Lopez, R. P. (2014). Pregnancy with chronic illness. Journal of obstetric, gynecologic, and neonatal nursing : JOGNN, 43(1), 25–37
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. That it’s just a matter of finding the magic combination of treatments to end flare-ups, when really, most self-management strategies relieve 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). 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 yourself harshly when those standards are not met.
Socially-prescribed perfectionism: when important others (family, friends, society as a whole) hold the individual to excessively high standards.
Other-oriented perfectionism: refers to the perfectionist’s judgment of others as they hold them to exacting demands.
Self-oriented perfectionism means that you set unachievable standards for yourself, and then berate yourself for failing to live up to them. 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. 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. You may push yourself beyond your limitations, or ask yourself, “Why can’t I manage to do anything?”
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. Meanwhile, such self-blame only perpetuats the cycle of toxic perfectionism!
Socially prescribed perfectionism means that important people in our lives, or society at large, hold us to unrealistic standards. We can internalize these judgments; that we’re not trying hard enough, that we aren’t productive members of society. People with chronic illness are also all too familiar with the toxic positivity evangelists, who healthsplain that all you need is the right attitude and you will be cured. This implies that it’s your bad attitude that keeps you sick today, and you aren’t doing enough to correct that.
In addition, there is a huge amount of social pressure to seem ‘fine’ and end conversations on a positive note, regardless of reality. This form of socially prescribed perfectionism is the mask you feel you have to wear outside of your inner circle to pretend everything is ok. 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 be seen by ourselves, and others, as holding it perfectly together. The pressure to do that can feel enormous. The criticism if you don’t put on the mask can really sting.
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. There are 3 components of self-kindness, and one of them is to remind yourself of your common humanity:
“You’re only human.”
“It’s ok to struggle and to not be ok.”
“You can always try again tomorrow.”
“Maybe this is just beyond your control right now.”
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. A second component of self-kindness is mindfulness. Bring yourself to the present by using your senses, to disrupt your negative self-talk. When you’re internally cringing because you feel you messed up, or berating yourself for not being better, ask yourself, right now:
What are 5 things you can see?
What is the texture of 4 things you can touch?
What are 3 things you can hear?
What are 2 things you can taste?
What is 1 thing you can smell?
Take a few deep breaths. Remind yourself of your common humanity. Connect to a feeling of self-compassion. One amazingly effective way to do this is to put a hand over your heart for a minute, or rub your upper arms like you’re cold. Ask yourself what the best thing you can do for yourself right now would be- a cup of tea, a walk, soft PJs, a good book, a treat.
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. Silently repeat these phrases for a minute or two, while breathing quietly.
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.
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.
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.
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
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.
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!
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.
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
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.
LaVigne, J.E., et al. (2021) Cannabis sativa terpenes are cannabimimetic and selectively enhance cannabinoid activity. Scientific Reports.
The Evidence: Fibromyalgia may be an autoimmune condition
In a paradigm shifting new study, researchers were able to trigger fibromyalgia symptoms in healthy mice by injecting them with blood from fibromyalgia patients. Specifically, scientists injected the mice with IgG antibodies from individuals with fibromyalgia in England and Sweden.
IgG antibodies (immunoglobulin G) are immune proteins that attach to foreign substances so the immune system can neutralize them. IgG antibodies recognize and target pathogens and toxins. Sometimes rogue IgGs, called autoantibodies, turn against our own bodies, and are directed against our own tissues, like joints or organs, which is what characterizes autoimmune disorders.
When IgG antibodies from fibromyalgia patients were injected into healthy mice, the mice developed fibromyalgia-like symptoms, such as an increased reaction to pain, less physical activity, and reduced muscular strength. After two weeks, once the IgG injections wore off, the fibromyalgia symptoms experienced by the mice reversed. In contrast, IgG injections from healthy people into mice did not cause any symptoms. Importantly, injecting mice with blood from fibromyalgia patients that had been filtered free of IgG antibodies also had no effect on pain sensitivity in the mice.
From these results, the researchers concluded that “fibromyalgia pain is caused by IgG autoantibodies,” and is likely an autoimmune condition. This is a profound change in how we understand and treat fibromyalgia.
But how do IgG antibodies trigger fibromyalgia pain?
The answer lies in where fibromyalgia IgGs appeared to target their activity in the body – the nervous system. Researchers examined tissues from the mice that had been injected, and detected fibromyalgia IgGs in specific nervous system cells that affect sensory nerves. In order to understand these findings, let’s define a few areas of the body:
Sensory neurons are nerve cells that carry information about sensations, like temperature, pressure, or pain.
Glial cells support, protect and take care of nerve cells by providing structural support, insulation, and nutrients, as well as modifying nerve signaling.
A dorsal root ganglion is a cluster of neurons around the root of a spinal nerve, just outside of the spinal cord. The cluster includes sensory neurons carrying information from the body to the spinal cord. Glial cells in the cluster form a layer around the cell bodies of these sensory neurons.
In this study, the researchers primarily discovered fibromyalgia IgG antibodies in glial cells of the dorsal root ganglia (the support cells in the cluster of sensory neruon cell bodies).
This finding means that fibromyalgia IgGs target glial cells that support and regulate sensory nerves, sensitizing them to pain signals. In other words, the immune system has gone haywire, and IgG antibodies are being directed against sensory nerve structures carrying pain signals. Hyperactive sensory nerves send more intense and frequent signals communicating the presence of pain.
But this isn’t the first time a discovery like this has been made. “Autoimmune pain” is a new term that describes how specific IgG antibodies can target different nerve structures, causing sensory nerves to become hyper-sensitive to pain and other sensations. But autoimmune pain has never previously been linked to fibromyalgia.
Putting this all together, fibromyalgia may be an autoimmune condition in which specific IgG antibodies target glial cells in dorsal root ganglia, causing the sensory neurons supported by the glial cells to become hypersensitive to pain.
How will this discovery change future research and treatments for fibromyalgia?
As a disorder of the immune system, a number of new treatments will open up for fibromyalgia that have previously been used for other autoimmune conditions. As we saw in the mouse study, the depletion of fibromyalgia IgG antibodies (once the human IgG injection stopped) reversed fibromyalgia symptoms. Theoretically, treatments currently used for autoimmune conditions like myasthenia gravis, which filter out the amount of IgG antibodies circulating in your bloodstream, could reduce fibromyalgia symptoms! “Plasma exchange is a dialysis-like procedure that is performed on a patient’s vein. An individual is hooked up to a machine that nearly simultaneously removes the blood and puts it back in. The machine “skims” the blood of harmful antibodies. Removing the antibodies prevents them from causing muscle weakness.”
It’s important to remember that this study was conducted on mice, not humans, so much more needs to be done before we can understand or treat fibromyalgia as an autoimmune condition.
Autoimmune pain explains why fibromyalgia is a pain condition without inflammation, because the immune system (IgGs) directly targets the nervous system. The absence of inflammation, a hallmark of most injuries, and pain conditions like arthritis, has historically been used to suggest fibromyalgia is “all in your head” or “psychosomatic.” Studies like this one will hopefully be the nail in the coffin of the doubts about the physical pathology of fibromyalgia – it’s “all in the body!”
Critically, no fibromyalgia IgG was discovered in the brain or spinal cord (brain and spinal cord) tissues of the affected mice, demonstrating that the fibromyalgia pain was caused by the sensitization of sensory neurons in the body.
Previous research has shown substantial alterations in central nervous system activity in people with fibromyalgia compared with healthy individuals. The researchers suggested that the hyper-sensitization of sensory nerves in the dorsal root ganglia, which are located just outside of the spinal cord, could alter nervous system activity in the spinal cord, thereby causing the patterns of central nervous system characteristic of fibromyalgia. However, further research needs to clarify the body vs. brain debate over the mechanisms of fibromyalgia pain processing dysfunction.
Goebel A, Krock E, Gentry C, Israel MR, Jurczak A, Urbina CM, Sandor K, Vastani N, Maurer M, Cuhadar U, Sensi S, Nomura Y, Menezes J, Baharpoor A, Brieskorn L, Sandström A, Tour J, Kadetoff D, Haglund L, Kosek E, Bevan S, Svensson CI, Andersson DA. Passive transfer of fibromyalgia symptoms from patients to mice. J Clin Invest. 2021 Jul 1;131(13):e144201. doi: 10.1172/JCI144201. PMID: 34196305; PMCID: PMC8245181.