There are lists of lists out there on the top strollers, breastfeeding pillows – and everything in between – that you need in your new adventure as a first time parent. But the criteria that editors use to rank baby gear don’t include the factors that a mom or dad with an illness or disability needs to consider: is the product comfortable, ergonomic, lightweight, or adjustable? It’s really hard to find any information or advice on the internet about what you should look for as a parent with an illness or disability when you are buying or listing on your registry the big pieces of baby gear. Here are my top recommendations, based on trial and (mostly) error.
That Soothing Bounce: You Need A Yoga Ball (aka an Exercise Ball) Many parents have to pace miles in their home while perfecting just the right jiggle-rock to get their baby back to sleep. This is no longer the only option! The exercise ball has a magical calming effect on babies when you bounce on the ball and hold your little one. I really saved my knees and my back using this trick, because long periods of standing or walking cause me a lot of pain. The ball works relatively quickly, at least on our colicky baby, and was much easier, relatively, on my body.
Get a Tall Enough Change Table: You are going to clock multiple hours changing diapers and changing outfits (welcome to the blow-out diaper!). Stooping over to change your newborn’s 14th diaper of the day is only going to make your neck, shoulder and back pain worse. For me at 5’7″, a 37″+ height was perfect. It’s recommended that the change table be waist high, and that it allows your elbows to be at a 90-degree angle when you change diapers.
Buy A Height Adjustable Bassinet Or Crib: For the same reasons as above, you can help your back out by having a bassinet or crib that allows you to adjust to a good height level for bending over and scooping up your baby. We chose the Halo bassinet because it also swiveled, which let me easily access our baby from bed (genuine opinion, not a solicited endorsement, like any other recommendations).
Invest In A Good Carrier: Whether or not you can carry your little one in a carrier will depend on your pain or illness. It can be a wonderful option if your baby likes to be held or is colicky and needs frequent comforting, or is refluxy and needs to be help upright often. A carrier can really save your arms, shoulders and upper back. When it came to trying different types of carriers, I didn’t find a baby wrap/sling very supportive. Instead we use one with thick, adjustable straps and lumbar back support. We had to order 3 and try them each before finding a good one (the Beco 8 worked for us – not an endorsement, just my personal experience). Your partner can put the baby in the carrier too, giving you a break from caring for your little one and give you a chance to rest!
Buy A Light Stroller (and other gear): Strollers can be surprisingly light. I really like our GB Qbit which is about 15 lbs or 7kg (not an endorsement). It is light to lift and easy to push. I can fold it up with one hand which is also helpful. I don’t carry it up or down stairs usually, since I leave that to my husband, but I can put it in the trunk. There are many other similar options, so you don’t need to settle for a 40 lb stroller! Online sites like Amazon let you check the weight of each item you order, and this is an important factor when considering anything you need to lug around, like the diaper bag.
Forget the Breastfeeding Pillow (But Support Yourself The Right Way With Regular Pillows): I bought the Boppy pillow early on, hoping it would make breastfeeding comfortable. I was pretty sure holding my baby in my arms for so many feeds would hurt my shoulders and upper back (I was right). However, the pillow didn’t help me at all. I decided to feed in a recliner chair, and the Boppy barely fit around me, let alone around me but between the arms of the chair. You need to use it on a couch, I’m guessing, but this option doesn’t offer much back support. For me, what worked best was putting an overstuffed regular bed pillow on my lap, and then baby on the pillow (in cross cradle breastfeeding position).
Talking to a lactation consultant helped me find the best nursing positions and how to place pillows optimally to support myself. Definitely pretend try a variety of nursing positions before baby comes and think through where you would need support for your back and arms. For example, in side-lying, you can put a pillow between your knees, and behind your back. When I bottle feed, I put the pillow propped against one arm of the chair, while my daughter sits on my lap with her back supported on the pillow (facing the opposite arm of the chair).
We’ve just put our little one down for the night and she will *hopefully* sleep for another 6 hours, until her one (and now only!) night feed. She is almost 7 months old, which seems incredible to me. How did the time go by so fast? But also, how did we figure out our way through? I remember the nights of waking every hour or less, the seemingly never ending crying sessions, the steep learning curve – and wondering how we would survive all in one piece. I think many new parents wonder the exact same thing! But it is more challenging when one of those parents live with a chronic illness or chronic pain condition, like I do.
You have one big positive working for you as a new parent with a health condition that makes you more ready for this than most first time parents. You know how to navigate tough situations that require perseverance. Fatigue? Done that. Constant doctor’s visits? Yup. Feeling overwhelmed by a massive life change or going stir crazy stuck at home? Been there. It’s very different, of course, but having navigated the challenges of your illness makes you much more prepared to mentally handle the stress of parenting and more resourceful in finding solutions. You will get through the difficulties, because you are a survivor and because you have to. Just look at that adorable little monkey (not sleeping) beside you for all the motivation you need!
Unfortunately, I found that despite all of my online searching, it was really hard to find tips or strategies to help new parents living with illness. There are probably thousands of blog posts that could be written on this topic alone, so here I can only try to make a start.
The Comfortable Carrier You Bought Can Be For Your Partner: In my case, my husband uses our carrier the most, and this gives me a break. . Sometimes a bouncer or swing just doesn’t cut it and our baby wants a snuggle. Since my husband works from home, when I need a rest , we pop our daughter in it and he works at a standing desk! Other times it allows him to do double duty, washing dishes while looking after her while I am resting. Bonus: Since our baby has bad reflux, the carrier allows her to be upright, which reduces her heartburn.
Core Strengthening Or Pelvic Physical Therapy/ Physiotherapy Can Help: Recovering from pregnancy and delivery is difficult. Your postpartum recovery could benefit from pelvic physiotherapy if you have issues like peeing when you sneeze abdominal muscle separation, pelvic pain, or back pain. Pelvic physio treatments have really helped me to improve SI joint pain during and after having my baby, so I recommend it if you have similar challenges.
Try A Belly Band: A belly band may help provide stability for the 8 weeks after delivery, according to some physical therapists. These bands support your postpartum abdominal wall and pelvis while you heal your core after birth. Although a belly band didn’t do much for me, we are all different, so it is worth looking into.
BioFreeze Is Your Friend (Or Other Menthol Patches/Rubs): Biofreeze is great. It really helps muscle pain and is the best non prescription treatment in my opinion. I also use menthol patches for persistent pain, such as back pain overnight. It’s a great non-prescription addition to your usual medication, stretching and strengthening routine. Plus it’s safe while breastfeeding.
Rest/Stretch Your Back While Baby Does Tummy Time Or Is On Their Play Mat: While your little one is doing tummy time, or playing on their activity mat, take time to stretch or rest your back. I do some stretches that target the pain carrying baby has specifically caused: cat/cow yoga poses, glute figure 4 stretch, pectoral “floor angel’ stretch, hugging knees to chest, and side bends. Lying with your feet on a chair can also relieve back pain.
Play on the Bed: On a day where my pain or fatigue are high, I put our baby on a blanket on the bed and lie down on my back beside her. She can chew on a teether, kick, or do tummy time while I rest my body.
Sing songs If Playing Or Carrying Is Too Painful: Sometimes you need to have an alternative way to interact that doesn’t involve picking up the teether for the 100th time, or anything physically repetitive or strenuous. My little one loves singing time. I don’t have an amazing voice, but she doesn’t care about that! We love listening to Charlie Hope on Spotify (the best children’s singer!). Other days we put on the Beach Boys and she kicks away happily!
Change Position as Often As You Can: Change your activity and play location often- every 10, 15 or 30 minutes. Discomfort often builds by locking into one position, like sitting in a certain chair for a long period. It soothes the nervous system to change your pose frequently, as able. Sit in a chair to read, then lie on the bed to sing, then walk around together looking at items in the house. Baby can hang out in their bouncer or swing if you need a break to rest your body in between.
Find a Comfortable Way To Sit On the Floor: Babies inevitably end up on the floor for much of the time. This can be uncomfortable if you have pain. When I’m sitting on the floor, I use a cushion placed near the wall or something I can lean my back against. I’m looking into getting a floor chair. Literally a chair, without legs, so you can sit with back support on the floor. Genius!
IVF is a long and invasive medical intervention, which can leave you wondering, “Can I really get through this with fibromyalgia?” That was my primary concern when I started the process in 2020.
The answer is likely yes, with certain accommodations. My doctor helped to facilitate the process to make it easier for me in some ways. I also had to learn the hard way that other things could have been done differently. These are a list of the questions I wish I had known to ask before starting IVF.
Fibromyalgia does not directly affect fertility. However, many women with fibro may also have endometriosis, which is a ‘common overlapping condition’, and endometriosis is a cause of infertility. Research also suggests that the frequency of PCOS, another infertility condition, may also increase in women with fibromyalgia.
Regardless of the cause, women with fibromyalgia and infertility might consider trying IVF at the recommendation of their doctor. IVF, or in-vitro fertilization, is defined as “A procedure in which eggs are extracted from a woman’s ovary and mixed with sperm in a lab dish to allow fertilization. The resulting embryos are placed back into the woman’s uterus in hopes of establishing a pregnancy.”The odds are in your favour, with a 55% success rate for women under 35 after going one egg retrieval, 41% for women 35-37, and 28% for women 38-40. This is so much better than the 0% chance you feel you have after trying for so long on your own.
Before we get to the questions, we need to define a few terms. All IVF procedures involve the following steps:
Ovarian Hyperstimulation (a.k.a. Making Eggs): The production of multiple eggs by giving medications. Ovaries normally produce only one mature egg each month and fertility medications will make more than one egg. The process is monitored using ultrasounds.
Egg Retrieval: A procedure used to collect the eggs from a woman’s ovary. The procedure is performed under anaesthesia or sedation. A needle is passed under ultrasound guidance into the ovary. The eggs are collected and given to the embryologist.
Embryo Transfer: The procedure where the embryos are placed into the uterus with the intent to make a pregnancy.
Choosing an IVF Protocol: The Long and the Short of It
There are two different protocols when it comes to ovarian hyperstimulation, or, stimulating the development of multiple eggs using fertility medications. These two protocols are called the “Short Protocol” and the “Long Protocol”. The main differences between the two are the length of time they take, and the type of fertility medications they use. Your doctor will decide between them based on which one is most appropriate for your infertility condition.
Ask your doctor: “What is the shortest, most effective protocol for me, so I can minimize the toll this takes on my body?”
The Long Protocol (or “Long Agonist” Protocol) lasts 6 or more weeks. This protocol is at least two weeks longer because it starts the menstrual cycle before your egg retrieval cycle begins. During this time, you take a fertility medication like lupron to “down-regulate” your ovaries (put simply, to turn off ovaries before stimulating them, which gives the doctor more control over the process).
Long IVF protocols require more days of medication and more injections than the Short Protocol. Since your hormones are being down-regulated over more days, you’re more likely to have side effects over a longer period of time. However, there is discretion within the long protocol on the duration of time you need to take lupron for. Your doctor can work with you to minimize whichever protocol you are on, so as to mitigate the toll it takes on your body.
The Short Protocol (or “Antagonist” Protocol) usually lasts about 4 weeks, starting with Day 1 of your period and ending with a pregnancy test. Down-regulation takes place at the same time as egg hyperstimulation, so the overall process is shorter. Fertility medications usually start in the first few days of the egg retrieval cycle. For me, the short protocol worked both in terms of my fertility issues, and in terms of managing my chronic illness by minimizing the amount of time I spent on IVF medications.
IVF Medication Dosages
The key differentiation between these protocols is the type of medication you are prescribed. Yup, these are the ones you have to inject (more on that below). My doctor explained to me that there was a range in the dosage level she could prescribe for the medications I was injecting. In order to minimize the side effects, she recommended the lowest effective dose.
Ask your doctor: “What is the dosage range you would consider for my IVF medications? What is the minimum effective dose that you think would produce eggs, but minimize side effects?”
I was fortunate that my doctor felt confident we would make healthy embryos at that lower dosage. The trade-off was that a higher dose would likely result in more embryos…and more side effects. I was torn. My husband asked me how many embryo transfers (rounds of IVF) I felt that I was capable of doing. As much as I wanted a baby, I had to acknowledge 3-4 embryo transfers was the upper limit that I could subject myself to. So, we decided to go with the minimum effective dose, and we got 3 embryos.
You may need to inject yourself for between 7-14 days. Ouch! Actually the needle isn’t that painful, but the medication may sting, depending one what it is. However, there are a few steps you can take to minimize the pain. Try icing the area of your abdomen for 5-7 minutes before administering the injections. Alternatively, ask your doctor about an over the counter numbing agent.
Fertility Monitoring:
During the egg retrieval cycle, the clinic will ask you to come in multiple times to draw blood, in order to check hormone levels, and do ultrasounds to see how your egg follicles are progressing. These are important appointments! However, you may not need to go in for the 8-10 visits they ordinarily suggest.
Ask “Would it be possible to limit my fertility monitoring appointments, to accommodate my illness?”
My doctor put a note in my file to limit the visits, so we did what was essential for testing and imaging, but not anything else. I didn’t go in as frequently, for example, until we were closer to triggering ovulation. I went in about 5-6 times. This was such a helpful accommodation, so I encourage you to ask about it.
Picking Up Your Medications:
Your doctor may vary your IVF medication dose level based on your test or imaging results during the cycle, and they will determine when to trigger ovulation based on your results.
When this happened to me, I found out that the only place I could get the ovulation trigger medication was at the clinic. It was rare enough that regular pharmacies didn’t carry it, and the ones that did were out of stock. So this meant I commuted for 1 hour to get to my appointment in the early morning, went home to wait for my blood test results, and then they wanted me to come back to the clinic to pick up the new medication, and go home again. This would have required 4 hours of travel time in one day! Definitely not chronic illness friendly. After a many conversations with the staff, I convinced them to give me the medication before I left after my ultrasound and blood work, but I promised not use it unless they told me to later in the day, after the blood work results came back.
Ask them ahead of time where you can pick up your prescriptions, whether you need to arrange for two visits in one day to the clinic in the event you might need a to pick up a new prescription, or if someone else could pick them up on your behalf later in the day. Alternatively, they (or you) can call ahead to check on the stock at your local pharmacy. All of this requires them to tell you about possible scenarios ahead of time.
Ask: “Where and when do I pick up my prescriptions? Is there a scenario where I might have to come in twice in one day, such as to pick up a prescription after my test results come back? What accommodations can we put in place to help me plan ahead, such as a notification that this might happen ahead of time?”
Fresh vs Frozen Embryo Transfers:
If there’s one thing that I would change if I could go back and do it over again, it’s that I would freeze all of my embryos after the egg retrieval, rather than going ahead and doing a fresh transfer immediately after the egg retrieval.
Ask: “What are the pros and cons of freezing all my embroys versus doing a fresh transfer? Would it be easier on my body to freeze them and rest, if possible, versus doing a fresh transfer?”
I chose to do the fresh transfer because the doctor said they have a slightly higher level of success compared to frozen embryo transfers. However, my poor body was so worn out from the month of injecting medications and going through with the egg retrieval, that the transfer was too much. They put me on almost 2 weeks of progesterone and did the transfer 5 days after the egg retrieval. It was stressful and invasive and put me into a flare. I wish that I had said no, taken a couple of months to rest and recuperate, and then done a frozen embryo transfer. That would be pacing, IVF chronic illness style. However, if you only have 1 or 2 embryos and want to maximize your chances, or the process hasn’t worn you out too much, then a fresh transfer might work really well for you!
Ultimately, there is no one right way to do IVF. It will be challenging no matter what, but with accommodations, it can be made easier. As for me, my first round unfortunately didn’t work. We were just beginning our second round when I found out I was pregnant. Life is funny that way sometimes! I hope some of this information helps out others with fibro who might be considering IVF, because I believe it is possible to get through the process, and it is worth it for the dream of starting your family.
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.
Improved Symptoms
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
Worse Symptoms
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.
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.
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.
Skillfully Well & Painfully Aware 