Why I Blog: Reflections After the Roche Diabetes Summit

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I started writing for ASweetLife over a year ago; at the time, I had reached a nadir in my life as a diabetic. I was struggling to accept my disease, to admit it into my life, to acknowledge it and manage it. My husband struggled right alongside me, feeling frustrated and helpless. One day he sent me an essay in the New York Times, written by Catherine Price, one of ASweetLife’s writers, about her experience as a type 1 diabetic. And I wept as I read it, realizing for the first time that I was not alone in my confusion and frustration with this disease. I wrote to Catherine, she referred me to Jessica Apple, the co-founder and editor at ASweetLife, and Jessica asked me if I wanted to start a blog.

I hesitated. I did not consider myself a blogger. Blogging, to me, seemed kind of like Moby Dick– some scruffy old guy out in the middle of the ocean, screaming at the wind about a problem only he cares about.  But after meeting the people at ASweetLife, and discovering the wealth of experience and writing there, I realized that’s not really what blogging was like. Rather, that’s what my life with diabetes was like.

I think one of the greatest emotional pains of diabetes– of any chronic illness– is the sense of being alone, battling an illness in a dinghy, out in the middle of the ocean, and that it’s a deeply personal struggle which no one else understands.  What becoming a reader and a writer at ASweetLife taught me was that this wasn’t the reality. I was not alone; we were all out there, trying to understand this disease together.

And collectively, I saw, we knew a lot. And that’s where things began to turn around for me. Blogging at ASweetLife is not about just finding a public forum to scream at the wind. I blog because, collectively, we know something. And this is a horrid cliche, so I hope you’ll forgive me, but knowledge is power.

At ASweetLife, we’re trying to record and catalogue and create the knowledge we need to live as diabetics.  And after all these months of blogging, I have learned quite a bit. Generally speaking, the knowledge I have gained– and that readers of ASweetLife gain– falls into four categories.

The first is perhaps the most important. It is what brought me to ASweetLife- the knowledge that I am not alone. That we are not alone. At ASweetLife more than a dozen contributors are writing beautifully and intelligently, putting into words the experiences I have every day.  And that is powerful for me, for our readers, for their families. That assures me every day that this is not just survivable, but that it’s normal. My fears, my pains, my foibles as a diabetic– they are shared, and we belong.

This first piece of knowledge allows us to recognize the second piece of knowledge– that it is possible to live healthfully with diabetes. Diabetes is not a death sentence, and it’s not even a kidney-disease sentence.  Rather, it’s an invitation to take better care of yourself than you would have without diabetes. It’s an invitation to make Peruvian-Style Roasted Chicken with Sweet Onions, or Gluten Free Chipotle Cheese Chips. It’s an invitation to run marathons, like our co-founder and writer Mike does, or to hike Northwestern peaks like our newest blogger Katie does. And, yes, doing these things as a diabetic is harder than as a non-diabetic, but that’s a challenge we can choose.  And with the help and support of those who have gone before us and told their tales, it’s a challenge we can overcome. And afterwards we see and feel and know– this disease is livable.

The third area of knowledge we focus on at ASweetLife is my personal soap box, and that is the knowledge of the science behind diabetes and its coming cure.

One of the most challenging things for me as a diabetic is that it doesn’t just alienate me from non-diabetics. It alienates me from my own body. There is this frustration prevalent in diabetes– my brain is too small to keep track of all the variables that are relevant to the massive combinatorial problem that is blood sugar management. And so my own body becomes this black box; I throw inputs at it, and these outputs come out, measured in milligrams per deciliter, and I make mistakes.  That process can be so defeating and belittling, leaving me sweaty and hypoglycemic, cursing myself for not understanding better.

If we learn about this disease, however, about what causes it, about what’s going on inside our bodies, about how to fix it, then we can begin to reclaim a sense of control, and reclaim ourselves from diabetes.

In other words, if I’m low and confused and bumbling, it sucks. But, if I can drop a ten-cent word like neuroglycopenia afterwards, and I can explain to my concerned coworkers that I had taken too much insulin, resulting in too little sugar passing through my blood, resulting in insufficient energy supply for my tissues, then at least I have a why, and I can regain a sense of self and personhood and sanity.  By taking the science from the world of the researchers and doctors into the world of the patient, we remove some of the alienation from our own bodies.

The fourth piece of knowledge ASweetLife has given me is that diabetes is not a national epidemic, as so many have claimed; it is a global epidemic, and we cannot ignore that.

Because of this fact, ASweetLife tries to represent an international voice; I am in San Diego, but we have writers across the U.S., and we have writers across the world- Israel, Estonia, Japan, Hong Kong, even out sailing international waters. And our writers and contributors travel, sharing the stories of diabetics across the world, from Haiti to Ghana to Tibet.

As I read along with our writers, it becomes clear: if we try to address diabetes alone, we will fail. And if we try to address diabetes as a nation, we will fail. This is a global problem, and it needs to be recognized as such.

When you realize diabetes is a global problem, you begin to see is that diabetes is not about me and old Ahab in the ocean, looking desperately for some whale. It’s about 200 million of us,all out in the ocean, all looking for the same whale.

And, frankly, if we all come together, and share what we know, I’m pretty sure we can find what we’re looking for.

Karmel Allison is ASweetLife’s science editor and a regular contributor.  She writes the blog Where is My Robot Pancreas?

Comments (7)

  1. Domingo Liotta at

    Karmel

    Thats a great way to summarize so many feeling inside us. I strive as a diabetic to care for my body and as a doctor to care for my patients diabetes and non diabetes.

    We are a global community and we can do so much as such I think a change can be made to help all of us

    Its an ongoing task but we can do it

    Blessings

    Domingo

  2. Karmel, 

    Thanks so much for this article. I can’t even begin to say how touched I am to think that my article back in 2009 inspired you to write about diabetes. I’ve often commented to my own husband about how much I enjoy your writing — I learn something new every time I read one of your articles or posts. I’m so glad to hear that writing has helped you. I, along with all the other readers out there, have benefitted enormously from your thoughtfulness, curiosity, and ability to write about science in such a comprehensible and interesting way. 

    Thank you.
    Catherine

  3. Jessica Apple
    Jess at

    Karmel, I agree with Catherine.  You are a great writer, I always learn from you, and I think others do, too.
     

  4. Karmel Allison
    Karmel Allison at

    Aww, thanks :) Now I’m blushing–

  5. Hey Karmel, it was great seeing you last week in San Diego. Sorry we didn’t get too much time to chat. That’s for expressing the challenges of diabetes living so eloquently.

  6. Sarah at

    Actually, Type 1 diabetes is not an epidemic, nor is it increasing as many seem to think. What is actually happening is that the age of diagnosis is decreasing (so more young children are being diagnosed while later diagnosis cases have dropped). In other words, it’s staying about the same but the data is misinterpreted, it’s still 0,5% of the population give or take. Why? Too clean, changes in diet (food chemicals, etc), vaccines? Who knows, but the disease is simply being triggered earlier. As for Type 2 diabetes, that IS an epidemic, but it’s an entirely different disease….

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