This ‘diabetes’ can be so complicated. The two-edged-sword is a slippery slope indeed.
The World Health Organization defines ‘Health’ as the following:
Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.
So to have a disease, according to this definition, would mean that those who have Type 1 diabetes would not be classified as healthy. And make no mistake about it, diabetes is a disease. No matter what we tell our kids or think to ourselves; it is not a merely a condition; IT IS a disease.
I have certainly seen that our kids (and adults) can do anything with diabetes. But the truth is that it can change almost instantaneously via a glycemic reaction, or worse yet in the future as we all know too well. We continue to strive toward better management and better caring for diabetes but we show the world two very distinct versions of our lives.
We say that the world does not understand what our children go through, what adults go through managing their diabetes, what we go through managing our children’s diabetes; but we also say do not call my child sick, my child can do anything, my child can conquer the world.
We encourage our kids to reach for the stars, but we go before many entities asking for funding to be increased and to continue to cure diabetes because of everything our children ‘go through’.
Now saying to a group of people who live as we do something along the lines of what I wrote above, well, we all get it. But what we show the rest of the world; well THAT message must surely be confusing TO THEM, don’t you think?
I write today not as someone who says there is an answer to whether our kids should be classified as ‘healthy’ or not. I write about this today so it becomes clear that if we as an entity, the diabetes community, are not in sync and cannot agree how to relay diabetes to the world, why are we so surprised that the world ‘doesn’t get it’?
Like I said, I have no answers to this; but I surely welcome your input. Thoughts?
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14 replies on “Are Those with Diabetes………Healthy?????? The Two-Edged Sword!”
Tom – I think this is a discussion well worth having. As someone who lives with diabetes and the parent of a child with diabetes, I have often felt caught between the two worlds of “can do anything” and “can we have some accommodations/empathy/understanding please”. I also believe that wanting to believe that we are truly “healthy” also prevents us from acknowledging the truths that are part of this disease – possible untimely death and complications. We may shy away from asking the hard questions (why do these things happen?) because in our attempts to live full lives on a daily basis we don’t want to face these truths head-on. Having just had a discussion with a financial adviser forced me to face some financial questions – as I move toward retirement, how will I fund my medical expenses? Will Medicare cover the supplies that I have come to rely on (OmniPod and Dexcon)? Should we be allocating more retirement funds to health care in case of long-term complications that may or may not arise despite my best efforts to avoid them?
It is very east to “forget” that we are living with a disease because we have learned to live with the day-to-day care of it, and at times a very rude awakening to be faced with the realities of it. I advocate bringing the truths, no matter how distasteful, to the forefront in an effort to further research and education.
Fabulous points indeed….it is a discussion now out there and it is my hope that many will engage, such as you did. Thanks for writing.
Copy and paste Barb’s comment, because that is mine also! Well said Barb!
Thank you for chimimng in.
I’m going to take the second half of that statement…not merely the absence of disease or infirmity…and go with that. There are many markers of health. Even with type 1, many of the kids and adults I know are healthier than those without a disease. I know many without who can’t walk a mile, let alone run one. I know many with who are long distance runners, swimmers, triathletes (myself included) who see diabetes as an inconvenience but not a huge disease state. Yes, by medical definition, I have a disease. But…by my definition, I have an opportunity to live life to the fullest and have diabetes along for the ride…which, in my opinion, has made me even healthier. I’ve had doctors look at me and ask how I could “possibly be suffering from diabetes”. I tell them I don’t suffer. I live. Fully.
Health can be what we make it…Webster or Mayo aside…
Well put!!!!!
Thanks.
I think it doesn’t serve anyone with this disease to pretend like “its just a thing that we have that doesn’t effect the rest of your life.”
I think this disease needs a lot of room- time and space- without which it is impossible to be healthy.
I think this is a much broader dialogue, in that the WHO”s definition kind of ignores the history of 20th century medical and scientific advancement, in that MOST of us are either living, or going to live, with disease.
but No disease is “free”— just take your medicine, and thats it. And ecosystems- living networks- aren’t linear in nature, the ecology of illness has many effects on the experience of life that cannot be directly quantified.
I think this needs a much broader light in the diabetes community.
I spent 24 years pretending like my diabetes didn’t drastically shape my life and experience of life—– even as I backpacked solo through India at 18 years old for 6 months, pursued a performing arts and creative career, and everything in between.
but thats not true. My diabetes makes my life very different. I actually realized that by living with my ex boyfriend who was also a performer. I kept on not understanding the difference between us. I actually now know that it was because I was pretending I don’t have a disease that requires a lot of constant effort. Though I was doing the work of maintaining it (injecting, checking BG) i wasn’t truly caring for myself, or it, by giving myself and it the space it truly needs. I think the jump between the former and latter is a huge one, and only in the second, can true health with this disease be possible.
i love this conversation and think its a very important one. Thank you for it.
So my question is this: Continue it…….how? Many people write to say that it s a worthy discussion…….any ideas?
Thanks.
Well, I think this ties to a much broader cultural discussion on illness and health, the presence of disease in our everyday life, and the reevaluation of “normal.”
I think at the root of the attitude of “diabetes is just a thing I have” is denial. Once you truly accept the disease and what it needs, then its a part of you and you say “why yes, we ARE on the life journey together, and though sometimes ‘Betes is a spoiled brat and I want to toss it out he window. I’m going to combine our wills and needs and have an amazing full life.”
We are carrying the conversation forward by having it.
For a bit of a shameless plug, The Betes Orgs work is about fostering healthy relationship to illness, and being a force in a shift in culture in how we understand illness and health. Our workshop-performances do this within the community and medical facility. We’re also gearing up to launch a monthly variety-style show in the fall (outside of a medical setting) to create a broader cultural space that is fun, entertaining, full of story and life, and gives the stories of people with all kinds of chronic beasts a space and voice.
Riva Greenberg is also carrying this conversation forward, so is Joy Pape, Asha Brown…
have you read this ? same conversation, different illness :+)
http://butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
I have read Christine’s spoons once before….I am sure, those who live with something, have the same feelings. It was nice to read it again. BTW her ‘spoons’ is no more brilliant than what you do my friend.
In a perfect world. There would be a sliding scale, providing accommodations as needed, for everyone and anyone regardless of where they place on the health chart. Unfortunately that’s not the world most of us live in. And health/healthcare becomes a more complicated equation of attitude, access and finances. Important to continue the discussion because I think we all have a stake in this game even if we struggle to define our position.
It also tends to add that the definition, or what it is classified, is not as important as the attitude in managing it. Well said and I tahnk you friend…….as always.
When I diagnosed my third child with diabetes and the endo on call wanted me to take her to the ER, my response was “I am not taking her to the ER. There are sick people there. She’s not sick. She has diabetes.” My children are not sick. They have a disease that requires them to work very hard to remain healthy. So far so good.