Like many people dealing with chronic pain, I am frustrated by the lack information available to me through medical avenues and have opted to conduct a great deal of independent research in order to better understand my condition.
Here is (in alphabetical order) my take on some of the chronic pain and migraine-related texts I’ve come across so far.
Thoughts? What are chronic-pain related things are you reading/watching? Please leave rants, raves, and links to your own reviews in the comments section below.
This 2005 memoir from Paula Kamen is (unfortunately) still totally relevant. She takes us on her journey, moment to moment, sharing all the medical, emotional, and logistical details with brazen honesty and hilarity. As the title suggests, the quest is indeed epic, as is the case for most of us seeking adequate treatment for chronic head pain. Throughout, I experienced a mixture of catharsis, empathy, solidarity, and generally a feeling of being less alone. Kamen also includes a healthy dose of gentle advice and useful medical information, with a side dish of spot-on feminist analysis. This is a must read for any woman on a similar quest.
The film “Cake” has stirred a fair amount of excitement and frustration in chronic pain communities. Like many, I was thrilled about the existence of a Hollywood film depicting someone’s experience with chronic pain and equally nervous about misrepresentation. After watching the film, my hopes and fears remain.
I was more than a little impressed with Aniston’s performance. Makeup-less, often housebound, and donning only comfy outfits, her movements are slow, restricted, and visibly painful. As the first depiction of chronic pain I have seen on screen, I was unprepared for how emotional I became seeing this physical experience reflected back at me.
Although at first we don’t realize the extent of her loss, we know that she is grieving and adjusting to a new way of life with pain, but doing it terribly. Her destructive behaviour might be a realistic response (the grieving process is necessary, unavoidable, and different for everyone), but frames her pain and loss in a cringe-worthy way: her maybe warranted, but shitty attitude is implied to be the barrier to progress. In other words if she truly wants to get better, she can.
I have no doubt that attitude can have a strong effect on our perception of pain, and that hope, mindfulness, meditation, visualization and the like are powerful tools, but the stigma against chronic pain patients who are supposedly wallowing, helpless, negative, “drug seekers” who exacerbate their own circumstances is a narrative I’ve already heard plenty of, thank you. How about a story that reflects how strong, resilient, and badass we spoonies are in the face of daily, depressing, and life-transforming pain? Or how so many of us have given up on pain meds for the most part due to intolerable side effects? Or how pain can and often does persist alongside hope, determination, and “positive thinking”?
Lastly, Claire is a privileged white lady with a live-in housekeeper and caregiver, not to mention a big fancy house and car. In reality, many people with chronic pain struggle financially having had to give up careers and shell out endless dough for treatments. This story would look very different framed with the economic circumstances of your average person with chronic pain.
While I’m grateful for this film, I hope the next blockbuster featuring chronic pain (and there better be a next one) works harder to dispel rather than reinforce lazy stereotypes.
Despite dripping in medical language that mostly went right over my head, I got a lot out of this book. It is helpful especially in understanding the physiological difference between acute and chronic types of pain, as well as the incredible complexities and failures of western medicine’s attempts to treat the latter.
Melzack and Wall refrain from any blatant patient-blaming, which is just wonderful (especially since this was first published in 1982!).
I suspect medical-sciency types will appreciate The Challenge of Pain more than the average chronic pain fighter, but with some patience there’s stuff in there for us too.
How to be Sick by Toni Bernhard is the closest thing I’ve found to a comprehensive self-help book for people with chronic pain, especially those who are largely housebound. With little prior knowledge of buddhist philosophy, I have been able to successfully adopt many of Bernhard’s strategies in some of my most difficult, most painful, most isolating moments.
My criticism has mostly to do with the fact that this book speaks to a particular experience of chronic pain: one that is privileged in that Bernhard has substantial financial, spiritual, and emotional support to buoy her along. I do not say this to make light of her experiences, nor to suggest that she doesn’t have something to offer diverse groups of people living with chronic pain; I only mean to suggest that the book is more a philosophical exploration of living with chronic pain when many supports are already in place, rather than a practical guide of how to seek necessary basic supports.
Even though I didn’t immediately relate to many of Bernhard’s personal experiences, the phrases, strategies, and rituals that she offers have been invaluable to me. I am so thankful that Bernhard persevered through intense illness-induced frustrations to complete this work. It will be a staple on my shelf for years to come.
As probably the most well-known and trusted patient educator and advocate for migraine, Teri Robert needs little introduction.
This book covers exactly what it says it will: “What your doctor doesn’t tell you… that you need to know”. From getting a correct diagnosis to finding the right medication and building a support system, Robert covers all the aspects of a well-rounded treatment plan that a 20 minute visit to your family doctor simply cannot provide. Although I have stumbled upon most of this information elsewhere in bits and pieces, I wish I had read this handy one-stop-shop at the onset of chronic migraine rather than three years in.
A recurring theme in the book encourages patients to stand up to insurance companies and fire their doctor’s “sorry butt” when they encounter misinformation, dismissal, or even a lack of compassion. This provided me with an immediate sense of empowerment, and I gathered the courage to cancel my next appointment with a gastroenterologist who has given me the same atomistic advice over and over to little avail. This encouragement alone – that I don’t have to waste my time with individuals or approaches that do not serve me – is worth the book’s weight in gold.
Another point that Robert aims to clarify with absolutism: migraine is a genetic neurological disease. In some ways I find this label comforting and necessary because it suggests that the severe, chronic, and disabling pain I have experienced is absolutely real, pathological in nature, and distances my condition from frustrating patient-blaming stereotypes. In other ways I fear this label does me a disservice by separating migraine from its ripple effects throughout my body (ex. depression, IBS) and thus could prevent me from interpreting my symptoms more holistically. While simultaneously distancing me from blame, I fear it strips me of a greater sense of agency over my mental and physical state. I often wonder, could thinking of my condition as an incurable disease actually hinder my ability to gain control over it? Perhaps not, because the vast majority of this book about “migraine disease” successfully provides the patient with the necessary basic tools to gain control over their own health.
Robert’s informal tone (“Fire their sorry butt!”) comes across as a bit corny at times, but provides necessary humour and accessibility to navigate a topic that is both emotionally heavy and scientifically complex. Despite being 10 years old, I believe the vast majority of Living Well With Migraine Disease and Headaches is still relevant and useful, particularly for those encountering disability at the hands of migraine for the first time.
The only book of its kind, Not Tonight: Migraine and the Politics of Gender and Health provides a thoroughly researched overview of historical approaches to migraine in Western medicine through a sorely needed feminist lens, calling b.s. on the gamut of insulting assumptions about women with migraine. From hysterical Victorian women to 20th century psychosomatics and every “migraine personality” in between, these observations are informative, fascinating, and appalling.
But Kempner doesn’t stop there. She effectively demonstrates how the paradigm shift from migraine as a psychosomatic illness of delicate, uptight women to a disease of the brain has done little to legitimize the experiences of people with migraine and the work of headache specialists. It seems that old tropes have easily found their way into the new neurobiological framework of the high maintenance, hypersensitive “migraine brain” as many specialists, advocates, and advertisers are actively “reifying gendered stereotypes about people with migraine by attributing unflattering feminized characteristics to their brains.” (102)
A chapter on the powerful world of pharmaceutical advertising serves to show how homogenous (white, upperclass, female, feminized) depictions of people with migraine perpetuate stereotypes, and contribute to the “legitimacy deficit” of migraine. These economically-driven advertisements suggest migraine is easy to treat, and do nothing to garner awareness of the very real disability caused by migraine in diverse populations. Worse still, she shows us how the work of pharma and headache doctors is inseparably intertwined so that the very industry that supports headache research simultaneously undermines it.
What Kempner does not offer in Not Tonight is a suggestion of how we might reframe migraine in a way that serves to accurately spread awareness of the devastating individual and far-reaching societal burdens it causes.
That part is up to us.
Let us use this information as a launch pad for new conversations about migraine to convey a more accurate depiction of people with migraine: a group that is large, diverse, strong, resilient, misunderstood, stigmatized, sometimes severely disabled, and often without access to effective care. Let it serve as a reminder that in order to change public perceptions of migraine, we must be willing to do the hard work it takes to become more self-aware through a better understanding of the ways history has shaped our own perceptions of migraine and engage in ongoing analyses of the language we use to discuss it.
Without question, this book is a must read for all headache specialists, advocates, and any pharmaceutical advertisers who have even one moral bone in their body.
Thank you Joanna Kempner for an eye-opening and timely read.
A frustrating personal narrative runs throughout The Pain Chronicles. Thernstrom’s reaction to first-hand experiences of chronic pain are apologetic in a way that made me squirm and want to cry it’s not your fault! Don’t belittle yourself or your pain, and don’t accept anything less than an equal-footed supportive relationship! Her tendency toward archaic female subserviency is intertwined with notions of herself as a chronic pain sufferer, and she consistently portrays herself as less valuable than her male partners, which I found hard to stomach.
Thernstrom does make a convincing case for chronic pain’s reification as its own disease, and also supports the necessary use of opioids in the care of chronic pain patients despite the medical profession’s fear of addiction. Unfortunately, she does not equally emphasize the misinformation or lack of information given to patients about the risk of medication overuse pain (although it is mentioned later on in a less appropriate context).
I found the last sections of the book to be the most useful, trumpeting the importance of finding a “voice”, and communicating experiences of chronic pain both for the purposes of effective treatment and catharsis.
On another note, there is some fascinating and gruesome information about the history of pain medicine in the early chapters if you’re into that sort of thing.
I recommend this book with the caveat that readers treat it as a choose-your-own-adventure, reading only the sections that suit their fancy.
A documentary by The Discovery Channel
The first thing that struck me about Pain Matters was the cheesy narration, the dramatic soundtrack, and some 9/11 imagery that perpetuates the mainstream media’s oversimplification of the reasons for deployment of U.S. troops to Iraq. In these ways, the documentary feels too flashy and “made-for-TV,” but the difficult, at times tear-jerking stories of individuals with chronic pain mostly redeem this film for me.
Through the words of patients, physicians, and advocates, Pain Matters does a good job of drawing attention to the feelings of isolation, anxiety, frustration, and depression that stem from being routinely disbelieved, dismissed, and misunderstood. With the repeated assertion that nearly one third of the adult U.S. population deals with chronic pain in some form or another, the need for more chronic pain education, funding, research, and access to “multi-modality” or “integrative” treatments is effectively conveyed.
However, there are some important voices missing from the discussion. All but one of the subjects featured can trace their condition to a specific injury or accident, which is often not the case for people with chronic pain. I would have also liked to see more discussion around patients being dismissed on the grounds that they “look too young and healthy” to have chronic pain. There is no discussion of access to care based on socio-economic status, race, sexual orientation, or gender identity, and disappointingly, chronic migraine is left out despite its prevalence, severity, and stigmatization.
In the final segment, Cynthia Toussaint speaks eloquently about her organization For Grace, explaining that although chronic pain care needs to be improved for everyone, currently women with chronic pain are disbelieved and dismissed at a higher rate than men. Is it significant then that the documentary opens with a famous hockey player’s tough-guy narrative, and ends with a story of a woman who went years without any kind of validation, diagnosis, or effective treatments for her pain? Is this opener a way to legitimize the experience of chronic pain through a trusted and respected (read: male, masculine, hetero, white) figure before introducing women with chronic pain, who are much larger in numbers but often cast aside?
Even with its limited scope and dramatic made-for-TV style, the documentary manages to get across some important messages. I am thankful for the existence of this film and hope that it will help the cause for greater mainstream awareness of some very real and disabling chronic pain conditions.