In the 1980s,
在这种背景下，我首先意识到有些人认为糖尿病是一种复杂的慢性疾病，因为“不好”或“好”。
Actually, it’s type 2 diabetes that people think of as “bad.” After all, conventional wisdom says, it could be avoided. If only the people afflicted had lived healthfully, so they didn’t get overweight. Or old. Or have a family history of diabetes. Or happen to be a member of a race or ethnic group commonly affected by type 2 diabetes (i.e., African American, Hispanic/Latino American, American Indian, Alaska Native, or Pacific Islander and Asian).
Or was it type 1 diabetes that was the “bad” kind? After all, without injectable insulin, people with type 1 diabetes would die. That’s what used to happen. Nevertheless, having diabetes wasn’t their fault. Type 1 is an autoimmune disorder. There was no way for them to know it was going to happen. No way to avoid it. And no cure is currently available, only treatments.
While no chronic disease can really be called “good,” some people with diabetes, the ones who complied with strict care regimes, have been characterized as “good” patients. They follow orders and do what they are told without questions.
如今，我们可能不会听到糖尿病患者在“好”或“坏”方面像过去那样粗暴地谈论的人。但是，许多相同的假设和信念导致将某人标记为“好”或“坏”继续发挥作用。
The public’s discussion of diabetes and the people affected is a case study in just such “其他.” That is, setting one group apart from another and positioning that group as somehow superior or more deserving than the other. Labeling groups as “good” or “bad,” for example, is a common practice that makes the separation clear to others.
However, this practice didn’t start in the 1980s with the diabetes epidemic debate around healthcare costs. Its roots are much deeper.
Looking back to the very early 20th century, medical research and records show that some of the most preeminent diabetes experts began labeling their patients who succumb as “不合规的” — blaming them for their fate.
Before the discovery and development of injectable insulin, pioneering physicians
In presenting his case studies, Allen explained that by faithfully following the restrictive diet he prescribed, a good outcome could be expected. Often when a patient took a turn for the worst, or died, Allen called into question the patient’s (and their family’s) faithfulness to the diet he prescribed, and did not comment on the deadly nature of diabetes itself.
今天，当医疗保健专业人员使用“不合规”和“控制”术语来描述其患者的自我保健工作时，我们听到艾伦的判断标签的回声。
“Sticks and stones may break my bones, but words will never hurt me.“
So goes the childhood chant. As if, through sheer will, a person can simply ignore hurtful and labeling words and remain unaffected. But in truth,单词可以伤害, especially when they are judgmental in tone and meaning.
“不受控制的糖尿病”是这种判断性术语经常应用于糖尿病患者的一个例子。它描绘了一张缺乏纪律遵循其糖尿病护理的人的照片。这也意味着该人以不合理的方式行事。
住患有糖尿病的人都可以告诉你, some days, diabetes simply will not be “controlled.” People with diabetes have experienced the frustration and disappointment that comes from following the same exact routine for medication, exercise, and food from one day to the next and still end up recording dramatically different results in glucose levels.
Medicine has identifieddozens of factorsthat can influence blood glucose levels. Everything from medication taken, exercise, and food eaten to hormone levels, allergies, sleep, stress, menstruation, and even scar tissue (lipodystrophy) can have an impact on a person’s glucose levels. Our understanding of these complex biological mechanisms is, at best, rudimentary. And so, the corrective actions we know to take are crude and the results unpredictable.
Yet the implication of a term like “uncontrolled diabetes” is that the person hasn’t done enough, or done enough of the right things, to successfully wrestle control over their diabetes. The patient is therefore lazy, or undisciplined.
When your best efforts are judged as not good enough, it’s extremely demotivating. Why even try when you know you can only fail? This defeated feeling leads people to shut down mentally and emotionally. It can drive depression and lead people with diabetes to skip actively managing their self-care, especially when they feel exposed or vulnerable to judgement or criticism.
Intolerance is at the root of such judgmental treatment. Being unwilling or unable to accept experiences or views that are different from your own, coupled with the assumption that you know what’s best, leads to that“othering” behavior and language.
有了“其他”，人们分为小组并分开。有些团体被认为不那么值得或应得的。因为他们有点少，所以这些群体中的人没有像所谓的上级群体的一部分那样受到相同水平的尊重，同情或理解。它设置了“我们”与“他们”的假设，使所有思想和行动都污染了。
通常，糖尿病中的“其他”采取了未经请求的建议的形式。在它的脸上，这些评论might seem to be well-intentioned. But every time a person with diabetes is asked “Can you eat that?” or is told “If only you did this or that you would be cured” their sense of self and self-efficacy takes a hit. Seeds of doubt are sown, leaving the person feeling marginalized.
当糖尿病社区中的一个亚组在自己和其他糖尿病患者之间划清界限时，也许最伤害的“其他”发生。
我与那些认为1型糖尿病是“真实”的糖尿病和2型糖尿病的人看到了这一点，以避免混乱。
糖尿病是一个umbrella term, like dementia. Each type shares commonalities with the others and yet is distinct. Not everyone understands all the distinctions. As a result, we sometimes encounter diabetes being painted with a broad, ill-informed brush in society and the media. But simply changing the name won’t educate people or ensure any better understanding of each discrete condition.
I’ve also seen othering behavior among people who proselytize for a particular diet or therapy or technology that works really well for them.
Diabetes is complex. When people find what works for them, they can understandably be excited and want others to know what they’ve discovered. However, no single approach to diabetes management works for everyone or every stage of life. Each of us, in consultation with our healthcare team, makes decisions about the approach to diabetes we’ll take based on our unique situation.
To label someone “good” or “bad” because their diabetes is caused by a different biological mechanism or because they choose a different path for their care is destructive to both the diabetes community as a whole and to the individual people in it.
Labeling people with diabetes as “good” or “bad” or dividing the diabetes community into “Us” and “Them,” by its very nature, is declaring some people with diabetes as winners and others as the losers. This intolerant thinking is destructive to both the diabetes community as a whole and to people individually.
First and foremost, it destroys our ability to be supportive of one another. Dividing the diabetes community leaves some people isolated from the wisdom and caring that can only come from people who have similar experiences.
Secondly, it undermines our ability to advocate as a community for better healthcare for everyone. There is strength in numbers when it comes to influencing decision makers in government and healthcare.
Only throughgenuine tolerance, which goes beyond mere acceptance to include openness, curiosity, and communication, can we get beyond “good” versus “bad” and nurture a supportive and inclusive community for everyone affected by diabetes.
How do we go about building genuine tolerance? By being open to and accepting of new ideas and actions.
Not everyone is the same. We each come with a unique set of values built through our unique experience. And while there will be times we don’t agree, we can do so without tearing each other down.
There is no winning with diabetes. While there are better and worse outcomes, life with diabetes isn’t a contest to see who comes out on top. We all face the challenges that come from living with a chronic and incurable disease. When we can come together and genuinely honor each other, we are better able to face the challenges diabetes presents, both individually and as a community.
Corinna Cornejo is a Hawaii-based content writer and diabetes advocate. Her aim is to help people make better informed decisions about their health and healthcare. As a Latina diagnosed with type 2 diabetes in 2009, she understands first-hand the many challenges life with diabetes presents. You can find her thoughts and musings about life with T2D on Twitter at@type2musings.