“Implicit in the experience of being disabled and living with chronic illness is the inference from society that you are broken.” –Karolyn Gehrig, #Hospitalglam
We don’t hear this just from society, but from ourselves. I constantly see people with chronic illness refer to themselves as broken. I used to do so myself until I realized how I was limiting myself with this rigid view. My body doesn’t work like I want it to, nor does it work like the bodies of the healthy people I know. But it works. I can breathe and walk and laugh. A body that can do those things is amazing, no matter what its limitations are.
It’s hard to not hate illness, but that often extends to hating the body where the illness resides. This obscures how truly incredible these bodies are. Their tremendous strength carries us through pain and illness, they allow us to awake to each new day. Our bodies are imperfect, but they also achieve astonishing feats every day. This is cause for celebration, not denigration.
#Hospitalglam, which is dedicated to “taking the shame out of being in treatment one selfie at a time,” and #Hospitalglam Shows Body-Positive Campaigns Work for Chronic Sickness Too have similar messages. As Jon Kabat-Zinn wrote, “As long as you’re breathing, there’s more right with you than there is wrong, no matter how ill or hopeless you may feel.” I scoffed the first time I read those words, but now I can see their abiding truth. When I stopped seeing my body as broken, I could begin to recognize all the amazing things it does. I began to love its beautiful imperfection.
U.S. medical research funding is decreasing and some diseases are horribly underfunded, according to a report published in the Journal of the American Medical Association (JAMA) last Tuesday. When it comes to migraine research, The Washington Post’s headline on the report is telling: How the U.S. Underfunds Research for Migraines, Asthma and Depression. As headache specialist Robert Shapiro, M.D. (@headachedoc) pointed out on Twitter, no major disease is as underfunded as migraine is. It’s “almost off-the-charts.” Literally. Take a look at where migraine appears on this chart.
In a related tweet, Dr. Shapiro notes that although migraine and schizophrenia have the same disease burden, NIH funding for schizophrenia is 12 times higher than it is for migraine.
It’s impossible to read those numbers and not get angry. Especially knowing these numbers:
- Given current population statistics, nearly 38 million Americans have migraine.
- As many as 15 million Americans have chronic migraine.
- Migraine costs the U.S. more than 29 billion dollars a year in medical expenses and lost productivity.
- Migraine is by far the most disabling of all neurological disorders.
- Migraine is the third most common disorder on the planet.
- Migraine is the seventh highest cause of disability worldwide.
- Severe, continuous migraine is as disabling as quadriplegia, active psychosis, and dementia and is more disabling than blindness or paraplegia, according to the World Health Organization’s disease burden assessment.
Migraine is not a measly little headache. It is not inconsequential. I have lived with the devastation of severe, continuous migraine. I often wondered if it was a life worth living. Too many people with chronic migraine decide that it isn’t. Will lawmakers ever see our desperation and need? If so, will they ever act on it?
References for migraine stats:
I’m celebrating using the last class on my 20-class yoga pass. It only took 10 months to go to 20 classes! Each card is good for a year and the last one expired before I got to use all the classes on it.
I mention yoga so much that it probably seems like I go to classes all the time. I have all five classes I like most on my calendar and try to go to almost every one. About an hour before class starts, I begin assessing whether or not I’ll be able to make it through the class. The answer is far more often “no” than “yes.” It’s frustrating and sometimes infuriating to not be able to make yet another class, but I love it so much that I keep trying.
Hmm, that pretty much sums up my approach to chronic illness. Can’t do the things I want to do? Keep trying and every once in a while I’ll get to. Had another treatment fail? Keep trying and maybe I’ll find one that helps. Feel like there’s nothing good in a life with chronic illness? Keep trying to appreciate even the smallest things and I’ll notice some of the goodness that surrounds me.
I know few things for certain, but am positive that I feel better than I have in ages because I kept trying when all I wanted to do was quit. I threw myself pity parties (sometimes for months) and took treatment breaks; I yelled a lot about how much it sucks to have chronic illness. But time after time, I picked myself up and tried again.
Giving up is a great way to stay exactly where you are — or to get even sicker. That wasn’t an acceptable choice for me, so I kept trying. It often felt like I was going nowhere, like my symptoms would never improve, that all the work was for nothing. But when my options were keep trying, stay stuck, or feel even worse, there was only one way I was willing to go.
My diet has the same frustrations as chronic illness on a smaller scale. Sometimes it’s good, sometimes it’s terrible. Most of the time, it’s something I really don’t like, but accept that I have to live with it for now. While a diet of 40 foods is wonderful compared to a year or two ago, it’s not enough. I won’t stay here forever. I see no way out of the current restrictions, but there has to be something. Despite not knowing how I can possibly expand my diet (preferably by reducing my reactivity to foods), I keep trying. I can’t not.
In Chronic Pain Workshop Totally Unprepared for Patient With Chronic Pain, Sarcozona, who is a PhD student with chronic migraine, highlights a serious issue for people with all kinds of chronic illness: Being sick doesn’t come with an instruction manual. When a chronically ill person seeks out guidance, the advice they find is often useless at best; some of it is actively harmful. Sarcozona’s experience in a chronic illness workshop falls somewhere in between, largely because she used it to fuel her own fire rather than internalizing the criticism and bad advice.
She attended a multi-week workshop on living with chronic pain that was developed by a Big Name Medical Center. The program has received high acclaim; I even considered becoming a facilitator for it. Her experience was awful. The facilitator was certainly a problem, but the book the workshop was based on was also terrible. Here’s her take on the book:
“It is also offensive and harmful, suggesting that people who are struggling are at fault for being bad ‘self-managers,’ a phrase I quickly came to loathe. The book constantly minimizes the struggles of patients and oversimplifies and over sells solutions. It almost completely ignores the enormous structural issues they must deal with. The few times it mentions structural issues, it does so in a way that puts all responsibility on the patient – it’s all about ‘managing’ your response (Got the blues because private insurance won’t cover your pre-existing condition and you have to move into the nursing home with abuse problems? Go scrub the bathroom with a toothbrush to distract yourself!). It hardly mentions uncertainty, one of the biggest struggles to living with many chronic conditions. It cites discredited or old and incorrect research in several places or is just downright ignorant or tone deaf.”
(Yes, scrubbing the bathroom with a toothbrush was an actual recommendation for coping with the emotional fallout of chronic pain. When I was at my sickest, scrubbing my teeth with a toothbrush was sometimes impossible.)
That’s only a short excerpt. Take a look at Sarcozona’s original post – it’s insightful, informative and well-written. While you’re there, checkout her other wise writing on migraine.
Not all chronic illness workshops miss the mark. The mindfulness-based stress reduction workshop I did was fantastic. I was frustrated and annoyed with the concepts at the time – “Yeah, like I can think of the pain as a ‘sensation'” and “She has no idea what it’s like to feel like I do” were among my kinder thoughts – but they have changed the way I think about illness and how I approach life in general. In a related secular take on Buddhism, How to Be Sick, by Toni Bernhard, is a great resource. (She’s at work on a book about using mindfulness to cope with chronic illness. I’m eager to see what she has to say and how it complements the MBSR materials). I also recommend Life Disrupted, by Laurie Edwards. It isn’t as directly instructional as How to Be Sick, but contains much food for thought. I’m working on a review of it that I hope to share with you soon.
Have you done a chronic illness workshop that helped you or read any particularly useful books? If so, please share!
Acetaminophen, the active ingredient in Tylenol, is an over-the-counter drug that many people think is benign. It’s been regarded as safe enough to use through pregnancy. As someone who used to pop large numbers of OTC painkillers each day, I’m increasingly horrified when new information comes out about the safety risks of acetaminophen. Most people don’t take high enough doses to be in danger, but people with headache disorders or chronic pain are at risk of taking too much without even knowing it. The risk isn’t necessarily in long-term use; exceeding the maximum daily dose in one 24-hour period can cause severe liver damage.
This infographic from the University of Florida’s pharmacy program highlights some of the risks and dangers of acetaminophen. If you’re concerned about your acetaminophen use, please talk to your doctor about alternatives. Some of the alternatives recommended below, like NSAIDs and opioids, also have limits to how often they should be taken; many opioids are packaged in pills that contain acetaminophen, which negates their use as an acetaminophen substitute.
(Click anywhere in the infographic for a larger, easier-to-read version.)