Hmmm. Where do I start?! Well it just kind of sucks living with a health condition that no one knows anything about. Type 1 diabetes... For the first 25 years I lived with it, I proudly stated to others, appropriately, when it came up, "I have Type 1 diabetes!" I never or rarely had anyone question it, so naturally I just assumed everyone knew, at least to some level what it is I deal with.
Of course they couldn't understand the insane intensity and tightrope of life and death we walk on daily by needing to inject a hormone called insulin to stay alive. And just how crazy difficult it is to be a pancreas and how EVERYTHING affects our blood sugars!!! And... the list could go on... But maybe they would have the brief knowledge that Type 1 diabetes is an autoimmune disease kind of like Multiple Sclerosis, Chrohn's Disease or Lupus?
Well a few years ago, after living with Type 1 diabetes 25 years, I had quite a surprise. This is when things changed for me in the perception I thought others had about Type 1 diabetes.
I was enrolled in a post-baccalaureate nursing program (one I have since left as it was not a good fit for me). I was talking with an uber-smart classmate after class on the steps of the building our science classes were held. Somehow it came up. My diabetes. I said like so many times before, "I have Type 1 diabetes!" A few seconds later she said, "What is that?"
I was shocked! And in major disbelief. We hadn't started the actual nursing classes yet, so hadn't been trained yet in diseases - meaning she was somewhat off the hook. Although I was a little surprised she didn't know what it was, at all.
But... that is when it dawned on me. All these years, most likely all or most people I have told have absolutely no idea what I am talking about when I mention my Type 1 diabetes! Wow! What a revelation. Yet this is the single BIGGEST part of my entire life affecting every single decision I make and never more than a thought away! They just never ask or have any curiosity I guess. Yet with their lack of any questions, I just assumed they knew!
Since diagnosis in 1987, a LOT has changed in the world of diabetes. A lot. Type 1 diabetes, an autoimmune condition in which the body attacks itself by destroying the beta cells of the pancreas which produce insulin, has increased worldwide at alarming rates. Not only that, but we are now a mere 5% or so of all cases of diabetes. Not a very high percentage although there are millions of us around the world.
Most of you probably know why we are in the minority. The explosion of Type 2 diabetes. Much of the time I can no longer innocently ask about the sugar or carb content in foods, or mention my diabetes without getting an inquisitive look filled with judgment and criticism. I hate that look.
They assume I am Type 2 and that I caused my diabetes by being lazy and eating garbage as that is all they know. When the media talks about diabetes, it is Type 2 diabetes they are referring to which is a whopping 90 - 95% of all cases. Yet when the media discusses diabetes, all they say is "diabetes." It's no wonder people are confused!
When learning I have Type 1 diabetes, sometimes I am asked why I am not fat. They say I don't look like I have diabetes. They ask if I ate too much sugar. Questions of any kind are rare though as of late and I think it quite possibly has been a few years since anyone has asked me any.
Am I sharing less that I have diabetes or are they just asking less and assuming because they think they know more?!
And there is absolutely no empathy for me or with whatever my request is due to my health situation when I do bring up my Type 1. I am treated with complete disregard when I tell them I need to watch my sugar intake (YDMV: Your Diabetes May Vary - This is how MY body works. It HATES cane sugar) or count carbohydrates, etc.
Can you imagine living with a difficult chronic health condition that you did NOTHING to cause yet are blamed and looked on with scorn for having it? I take better care of myself than most of the population. I fight in so many ways just to stay alive each day and to avoid the nasty long term complications like blindness, kidney failure, stroke, heart attack and a zillion others.
It is frustrating. Plain and simple. And I hate it. I hardly even mention I have Type 1 diabetes anymore as it seems no one knows what it means. If I do bring it up, the conversation stops and it does not help me in whatever the reason was for me in bringing it up.
Where does this leave us?
Advocating every little moment we have, wherever and whenever we can, when appropriate. When ignorance shines it's ugly face, calmly stating the facts about the condition we live with. And not getting frustrated with people when they do ask the questions, even if sometimes the questions they ask leave us feeling frustrated and shaking our heads.
At least they are trying to learn!
This is the best way to shed some light and impart knowledge to those unfamiliar with diabetes.
Often I am met with a dear in the headlights face or just complete disregard. You see, this condition is MUCH more than just taking shots and testing our blood sugar. But until people live with the condition themselves they are extremely apathetic. It is disheartening, but it is just the way it most often is unfortunately.
And the older I get, the more uncaring they become. When I was a child and in my teens and twenties, my serious health condition would be met more often than not with kindness and compassion. Empathy. I guess they think adults are not able to experience pain or our suffering just does not matter.
Especially when they think our suffering was caused by us. Lack of exercise. Poor diet. Unhealthy lifestyle, etc.
So what are we to do? When given the chance I usually try to advocate for both conditions, Type 1 and Type 2 diabetes. Letting them know that I did nothing to cause my Type 1 diabetes, it was just an unfortunate luck of the draw. I did get sick a lot as a child which may have acted as some sort of trigger.
And I share what I know to be true about Type 2 diabetes, that lifestyle is associated with about 85% of cases of Type 2 diabetes. Another 15% have done nothing to cause it, either having unfortunate hereditary genes or being in an ethnic group predisposed at a much higher rate.
There is also a lot of research taking place looking more into the sharp rise of Type 2 diabetes. If being overweight is the main culprit, why doesn't everyone overweight have Type 2 diabetes? I do agree though it is better for everyone to eat a healthy whole foods diet. And find some way to move our body most days of the week and to limit processed food, stress, etc. And that it seems there are a lot of unhealthy people out there for sure that need to clean up their act!
Living with Type 1 diabetes and the way I am treated (even by people you think would know!), I cannot fathom what life is like to live with Type 2 diabetes. I have empathy for all of you who live with it. Bust those myths and stereotypes by taking care of yourself and being good to your body.
Why am I bringing all this up? Sorry, it was kind of a long intro but I guess I had a lot to say! Well, you see... I had my feelings hurt this week, big time. Although I eat a healthy and balanced organic whole foods diet, I do not subscribe to any particular diet or way of eating other than balanced and healthy. My health has greatly benefited though from adding in Paleo recipes and I was happy to learn of new Paleo blogger about a month ago.
I've been following her on Facebook and was so impressed with her story and spirit. I have had a few conversations with her on her page and even shared my story a little bit. She too has suffered with an autoimmune condition among other illnesses and was now making it her life mission to blog and help others the way she has been helped through wonderful recipes full of healing whole food nutrition.
Imagine my surprise when I see a post on her blog's Facebook page earlier this week making fun of diabetes with the caption, "Ha! Couldn't resist!"
I was mortified. And stunned. How could she think this was funny? Didn't she know Type 1 diabetes is not affiliated in any way with diet or what one eats or drinks? I needed to be somewhere and was running late but took a few seconds to leave a comment educating her about Type 1 diabetes. I did NOT cause this by drinking Coke!! I found this educational picture about Type 1 on the original page where she had found the Coke pic and shared it with my comment.
Not getting home until later in the evening, I checked back on her page hoping to see she would have replied. Possibly apologized. Responded in some way? Nope, nothing. How could this be? And the post now had over 300 likes! I was even more upset. How could someone who has suffered immensely with health challenges of her own be so insensitive to others and the health challenges they experience?
I believe It is a responsibility of a blogger to put out accurate information, and if a mistake has been made, to correct it and apologize.
Here she had liked every comment except mine on her Coke post and just completely ignored my attempt to educate her. I decided to share a screen shot of her post with my comment on my blog's Facebook page. The comments of similar outrage at her lack of sensitivity came in fast and furious over the next day or two. It helped to not feel so alone and to just have people who get it to vent with.
And then as I perused Facebook this week, much to my happy surprise, graphics were made in support of diabetes. Sharing the truth!! Yay! Go Diabetes Online Community!!! It is important we fight back and let others know what is and isn't true.
I began composing a letter to the blogger, letting her know how know how I feel and providing some facts about Type 1 and Type 2 diabetes. Unfortunately I've had busy week, so have not had time to finish editing and send it to her yet. But I still plan to. I think it's important to reach out to her one more time although based on her initial lack of response, I am not sure how much success I will have.
One thing that did come up in the discussion about this topic on my blog page was the importance of not perpetuating myths about Type 2 diabetes while educating about Type 1 diabetes. Thank you Type 2's for speaking up and helping all of us learn. There is still a lot that is unknown about Type 2 diabetes and as I shared earlier, many healthy eating and active individuals are be-stricken with this challenging and life-threatening diagnosis.
So I ask you and encourage on behalf of all the individuals with Type 1 and Type 2 diabetes I care about:
Please be love. Act with care. No one chooses to get any health condition and we are all doing the best we can. Please be respectful and kind.
Fellow people with diabetes and their loved ones:
Please help continue and/or join this battle in educating the masses about Type 1 and Type 2 diabetes. It won't be appropriate all of the time and sometimes you may not have the energy or courage. But speak up and let your voice be heard when you feel that gush of emotion rising up within you, calling you to speak your truth.
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
- Margaret Mead
We may not see the change always, but we are sure making one.
And keep your chin up! It is not easy living in a time when you have people look at you with contempt when they learn of your diagnosis. But we have to keep doing the best job we can, knowing the truth in our own hearts, taking impeccable care of ourselves and educating those who will listen.
Do you have any stories of advocacy lately? How did the misinformed Coke graphic make you feel?
In Peace & Wellness,
I would love for you to join my Facebook blog community where I share personal stories, pictures and inspiration for the body, mind and spirit! You can also connect with me on Twitter @diabeteslight or sign up below to receive an email in your inbox when I post a new article. Thanks for reading and hope to see you around soon!