Although many people with diabetes tend to think just in terms of our own community, PWDs are actually part of a much larger community of folks with chronic illnesses; we are residents of the "Kingdom of the Sick," a term coined by cancer patient and writer Susan Sontag. That's also the title of a new book being released tomorrow, In the Kingdom of the Sick, written by Bostonian and college science writing professor Laurie Edwards.

Diagnosed in her 20s with a very rare genetic respiratory condition after years of misdiagnoses, Laurie knows a thing or two about being sick, as she's also living with bronchiectasis, thyroid disease and celiac disease.

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Laurie's new book is a departure from our regular book review fare here at the 'Mine, since diabetes is only mentioned as a small part of a much larger story surrounding chronic illness in contemporary culture.

She fills us in on how the experience of being chronically ill has evolved over the past few decades. The number of "survivors" has grown rapidly over the years, with the advancements in both diagnostic tools and medications. (Just reflect for a moment on how diabetes was fatal up until 1921!) But that doesn't make it any easier to understand, especially since by and large these chronic illnesses are "invisible" and can only really be understood by those living with the condition(s).

News nuggets from around the diabetes community

NEWSFLASH: FDA Clears Dexcom Share Direct
Dexcom gets regulatory approval of its 'on-the-go' mobile apps for CGM data-sharing.
State of the Union: It's Time to Cure Diabetes
President launching new precision medicine initiative to better treat, cure diseases like diabetes.
'Robotic Pancreas' Appears On American Idol
Carlos Santana's nephew Adam Lasher shows off Dexcom G4 during live performance.

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Much of life with a chronic illness is still being invented, as people walk a fine line between being functioning members of society while also needing care, compassion and commitment to their treatments, not to mention never-ending faith in a future cure. This balancing act is widely discussed in the diabetes community, but it's also something that other "chronics" face, whether you're living with Crohn's disease or chronic fatigue syndrome.

Laurie's book includes a gamut of different invisible illnesses, from Lyme disease to diabetes to cancer and AIDS. She discusses these conditions both from a historical perspective, as well as how our illness shapes our relationships with family, friends, healthcare professionals, employers, and even each other.

We recently interviewed Laurie to pick her brain about how we can continue to make life better in the Kingdom of the Sick:

DM) As a young woman, I was horrified to read about all the sexism and ageism that patients with chronic illnesses  are faced with -- even men because of expectations to be macho and tough. What can we do to work on these gender biases and assumptions?

LE) Gender and pain is a huge theme in the social history of chronic illness, and as you pointed out, one with implications for women and men alike. Men are expected to be stoic, while women are often told their pain symptoms are "emotional" or "psychogenic." Women are more likely to develop pain conditions and are generally more sensitive to pain, yet are more likely to be dismissed or have their pain treated less aggressively. It happened to me—when I was in the ICU with respiratory problems that weren't responding to medications, suddenly it became my fault. Perhaps I was just too anxious? As a young woman in college, perhaps I simply couldn't handle the stress? I wrote extensively about all of this in the New York Times recently, and I can't tell you how many e-mails I got from patients with the similar stories of having their symptoms dismissed or blamed on their emotions.

The short answer (because I could go on and on about this!) is that the best way to counter false assumptions and misconceptions is with hard facts. We need to dispel the outdated and offensive image of the "hysterical" female patient, just as we need to let go of the notion that men are "too tough to have pain." Hopefully, continued research into the sex-based differences in the underlying mechanisms of pain as well as in effective treatments for it will help us do that. Increased education and awareness about gender and pain and training in pain management will help health care providers better meet the needs of patients.

Even though millions of Americans have chronic illnesses, it seems there's still so much work to be done in the area of workplace discrimination. Do you think there will ever be a time when accommodations will no longer be so hard to come by?

I think the Americans with Disabilities Act is certainly a good foundation, but I think the trouble employees with chin-the-kingdom-of-the-sickronic illness often experience in trying to get accommodations in the workplace speaks to an underlying tension with chronic illness itself: it is often invisible, it flares and then subsides, and it is unpredictable.

When it was originally passed in the early 1990s, the ADA envisioned physical disability as a constant state — if you had vision impairments, hearing impairments, or mobility impairments, for example, those impairments would remain static. This doesn't mean discrimination doesn't happen to those with visible physical disabilities in many realms (just last week I saw this article about doctors' offices not being equipped to accept patients in wheelchairs!) but when it comes to chronic illness, the fact that symptoms and needs can fluctuate can really make it difficult to have a conversation about what patients need. Plus, since many chronic illnesses are not well understood by larger society (think autoimmune diseases) or otherwise stigmatized (think fibromyalgia or chronic fatigue), employees are hesitant to disclose their conditions.

Cultural change is slow to evolve, but it starts with conversation and awareness that there is a problem, and in that respect, I do have optimism the situation will continue to improve.

In your section on the AIDS community, you mentioned that they're not very interested in working with other chronic illnesses. In what ways should the various chronic illness communities work together and what do you think we can we accomplish together?

Let me say first that in terms of the history of HIV/AIDS activism, particularly in the early days of the epidemic, what is known as "AIDS exceptionalism" made a lot of sense. These patients were already a marginalized group, politically and socially, and their disease and its mode of transmission compounded this. What these activists were able to accomplish in a relatively short time—from pushing for research that helped lead to the development of the triple drug cocktail to improved social policies for housing and employment for people with HIV/AIDS—is incredible. With these gains in mind, and the challenges that remain, I think there is a fear that if these advocates align themselves with other chronic illnesses, they will lose some of this ground.

At the same time, for a lot of patient populations, there is power in mobilization. Look at the disability rights movement in the 1960s-70s—when groups abandoned impairment-specific agendas for a greater collective movement for human rights, respect, and dignity, massive change occurred.  One of the overarching questions of this book is if we will see that same type of mobilization with chronic illness as a whole, and I am not convinced we will. Chronic illness is a huge umbrella term, encompassing so many patients with different needs. Some need appropriate health care to access proven treatments, while others need more research into effective treatments, while others are still hoping for a diagnosis.

All that said, as a writer and a lifelong patient with multiple chronic illnesses, my philosophy has always been that the universals of living with chronic illnesses unite us more than disease-specific symptoms do. Many of us want the same things: we want to live a productive lives in which our illnesses do not define everything about us, we want health care providers who work with us and support us, we want to feel as well as possible, and we want to feel understood.

I was surprised to see that the diabetes community was not really referenced until the very last chapter, especially since we are often referenced as a very vocal community at healthcare conferences. Was this planned or just coincidence?

Globe with stethoscopeThe entire diabetes community, including the Diabetes Online Community, is a wonderful example of an empowered, informed community capable of moving innovation forward and of supplying necessary social support to patients.

All along, I knew I wanted to explore diabetes in-depth in the last chapter. This is a chronological book, and in covering something as broad as chronic illness, I made the decision early on to use different illnesses and movements in chapters as almost case studies to open up a bigger discussion of the social context of that particular time. For example, the emergence of HIV/AIDs, chronic fatigue syndrome, and breast cancer activism in the 1980s and the very different trajectories these diseases and movements took in part reflected the cultural mood of the time.  As another example, when it came to exploring the way modern virtual advocacy has fostered community and mobilization for patients who feel they remain outside conventional medicine, chronic Lyme disease was a natural storyline to pursue.

I think one of the most compelling issues in chronic illness and public health right now is the tension between individual responsibility for behavior and lifestyle versus diseases that are genetic or otherwise not as influenced by lifestyle choices, and in this context, diabetes is so revealing. It's problematic to blame patients for illness, especially when telling people to just go change their lifestyles oversimplifies the socioeconomic and psychosocial variables that all factor into illness (and wellness). I was thrilled to include interview material from members of the diabetes online community with type 1 and type 2 diabetes in this chapter.

The section on breast cancer cause-marketing reminded me of how the diabetes community has struggled to get recognition for the blue circle. Do you think cause-marketing has integrated chronic illnesses into popular culture in a positive way or in a negative way? Or both?

This is another great question. (And another one I could write about in a lot of detail here—I guess I have to say that you need to read the book!) In short, cause-related marketing for diseases has done a lot to raise awareness, and to fundraise for research and especially for cures. There are a lot of positives to this. However, it is not without complexities and limitations. For one, with chronic illness, there is no finite "finish line" and cultural emphasis on survivorship has the potential to leave out so many of these experiences. Secondly, as Kairol Rosenthal, a cancer patient advocate I interviewed, put it, just raising awareness is setting the bar too low. It's an important step, and of course, so is the quest for cure, but we also need to make sure the daily needs and realities of patients with illnesses don't get lost in the shuffle.

I think that's where a lot of the criticism about pink-washing comes from—as one small example, a couple of years ago, Susan G. Komen for the Cure launched a special perfume where proceeds would benefit the quest for a cure. It ended up deciding to reformulate the perfume after critics levied the charge it contained neurotoxins that can cause cancer... and, as many patients pointed out, women who are undergoing chemotherapy to treat their breast cancer are extremely sensitive to smells and get nauseous easily.

As someone who has been active in the digital space for many years, what are your thoughts on how online patient advocacy can improve?

I was asked recently what surprised me the most in writing this book, and I have to say I didn't expect a social history of illness to also become such a history of activism and advocacy. Of course this makes total sense, but it wasn't until I sort of stepped back and took stock of all that I had that it really hit me how inevitable this co-mingling is. You really can't separate whatever scientific or technological breakthroughs we've experienced from the patients and advocates who fought for them.

Nowadays, so much of our advocacy takes place online, and this advocacy is as critical now as it was during, say, the disability rights movement or grassroots women's health movement. The sheer amount of information out there is a blessing and also a challenge, and there is more and more responsibility on us as patients and as advocates to be discerning in what we read and share and what we put out there for consumption. Transparency is a huge part of the participatory medicine movement, and among other communities we've talked about, including the diabetes online community, I think participatory medicine and the e-patient movement are great models of online patient advocacy.

For more insights, you'll want to read Laurie's book of course. 

{Walker & Company, April 2013, $15.76 on Amazon.com}

The DMBooks Giveaway

Interested in winning your own free copy of In the Kingdom of the Sick by Laurie Edwards? Entering the giveaway is as easy as leaving a comment:

1. Post your comment below and include the codeword "DMBooks" somewhere in the the text to let us know that you'd like to be entered in the giveaway.

2. You have until Friday, April 12, 2013, at 5 p.m. PST to enter. A valid email address is required to win.

 

 

3. The winner will be chosen using Random.org.

4. The winner will be announced on Facebook and Twitter on Monday, April 15, 2013, so make sure you're following us! We'll update this blog post with the winner's name once chosen.  

The contest is open to all. Good luck!

UPDATE: This contest is now closed. Congrats to Myra Shoub from Chicago, IL who Random.org chose as the giveaway winner!

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.