Countdown Reason # 8: How Did We Miss This Chronic Disease Epidemic?

Laurie Edwards book
Laurie Edward's excellent book on the history of chronic illness in America, due out in April

How did we miss the chronic disease epidemic now facing America? And why are we so behind in meeting the needs of the 1 out of 2 adult Americans who suffer from them? I wanted to find out the answer to that question.

So I reached out to Laurie Edwards, author of the upcoming book In the Kingdom of the Sick: A Social History of Chronic Illness in America (due out in April). Laurie teaches writing for the health sciences at Northeastern University. She blogs about chronic illness, health care, and writing at A Chronic Dose.

I asked Laurie, “What has caused us to be so late out of the gate in meeting needs of patients with chronic illness, and in utilizing the new brain body science?

Here is what Laurie had to say:

“By and large, patients with chronic illness still navigate a medical system dominated by the biomedical model of disease, where patients are diagnosed, treated, and dismissed. This strategy is only effective with acute illness; after all, chronic conditions are treatable, but not curable. While many examples of a growing shift from this model exist—more centers with integrative care, or technology that allows patients and doctors to better collaborate in care, to name just a few—much work remains.

Another reason we’re slower to meet the needs of those living with chronic illness is that we get hung up on a limited view of prevention – the idea of preventing illness. For many patients who face chronic conditions, prevention is more about slowing down disease progression.

We need to be realistic about what the chronically ill population looks like. It is tempting to focus more exclusively on conditions like heart disease, diabetes, and lung disease when we think about chronic illness; after all, the seven most common chronic diseases are estimated to cost a staggering $1 trillion annually.  But this is an incomplete picture. Some 50 million Americans live with autoimmune disease, and a disproportionate number of these patients are women. An estimated twenty-five percent of the population lives with chronic pain and again, women suffer in higher numbers than men.  So many chronic conditions are “invisible illnesses”  – and this invisibility shrouds the physical realities that millions of people live with daily.

The gender gap also plays an important role in why chronic disease has been underacknowledged. Research shows female patients’ reports of pain are taken less seriously, treated less aggressively, and they are more likely to be characterized as emotional or psychogenic. Sex-based research into pain is one step. Already, emerging research suggests differences in the ways men and women perceive pain.

Chronic illness is incredibly complex, and these complexities feed into the delay in utilizing new brain-body science.  As you write in THE LAST BEST CURE, for so many patients, Western medicine has done all it can. Patients live with ongoing symptoms, try all sorts of lifestyle interventions and alternative therapies, and wonder if this is as good as it will get. While many recognize a fundamental mind-body connection, the idea that the brain itself could hold the key to healing is an enormous paradigm shift. Hopefully, science can give us more answers, and increased collaboration between patients and provides can help us put those answers into practice.”

I thank Laurie for her response to my question. I think it’s spot on. We’re late to address the skyrocketing problem of chronic illness in America, for all the reasons she cites. We have much to do. I hope that THE LAST BEST CURE helps us to better understand the emerging scientific answers and to put those answers into practice.

6 thoughts on “Countdown Reason # 8: How Did We Miss This Chronic Disease Epidemic?

  1. Very interesting! I think brain/body science will be a great point of focus for chronic illness treatment in the future- and will be well received by patients. It’s noninvasive, empowering, and depending on the approach, can be absolutely cost effective. However, I was recently in a situation on the other end of this spectrum, where I was placed in the “chronic illness, young female long term care” bucket of “this must be a brain/body issue” when it turns out, no one was willing to look biomedically at me because I was the “perfect” candidate for a chronic brain/body addressed issue. So we wasted a TON of time and money and watched my condition worsen as I explored brain/body science (which was cool, but did not help). I think there is always a risk of moving too quickly to the “ok this is going to be a chronic condition” department and that may lead to patients missing out on biomedical solutions that may be there, or be complicated, but be the underlying cause. Certainly not all the time, but speaking from experience, I was surprised how quickly my biomedical team moved me to “chronic illness” land due to my demographics.

    1. I think you raise an excellent point, Sarah. I write in THE LAST BEST CURE that the new brain-body science is very powerful. Life changing for those for whom Western Medicine has done all it can. And that’s key. I am very very clear in the book that the new brain-body science and the science of joy are not a new reason to blame people (women especially) for their own illness, or to say, “oh you’re just stressed out…” Not at all. This is a tool for those who have explored every option. Hundreds of studies have been done employing specific brain-body practices with those facing chronic conditions… and it opens up an entirely new possibility of living with joy. So the two situations are different, and you are so wise to point that out. Having said all that, THE LAST BEST CURE is also for those who don’t have chronic illnesses or conditions — and who don’t want to! Because the tools in this book are preventative as well.

  2. I, for one, am grateful for the work that each of you has put into this subject. If you live with a chronic health problem and or work with people who do (and I fall into both categories), then you know what this issue does to a person’s life. I’ve learned from my own experience how difficult it is to treat even relatively common issues, such as urinary tract infections, once they become chronic. I’ve utilized every type of health option I can find for over 35 years. At the end of each day, it rests on me to maintain the effort to improve my health. That’s a big responsibility and not all of us have the capacity to do this — but we can develop it. Resources such as this gives us the information and inspiration to keep trying. Thank you, Donna and Laurie, for putting this in our hands.

    1. Rosalind, it is wonderful to hear from you here. Your advocacy for patients with chronic illness and autoimmune disease, especially women with autoimmune disease, is so important.

      1. Rosalind, I am so glad to hear your voice here, you have done so much for patients and couples facing chronic issues and have such wisdom on this. Thanks for all you do as a chronic illness coach.

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