Others never talk about their diabetes...
"Other people I have treated never talk about their diabetes or mention they have it." These are the words I recently heard at one of my holistic healthcare appointments. I didn't know how to respond, thus didn't say much at all. Am I not supposed to mention my diabetes?
What is the etiquette as far as announcing our diabetes to our healthcare team? Typically Type 1 diabetes is the FIRST thing I think of as I fill out my paperwork or discuss my case history with a new practitioner. It often comes up other times too - if my blood sugars have been in range or if they have been running high the last few days or if lows have been waking me up in the night, etc.
Diabetes and the care it requires to live a good healthy life takes up a major part of my day (and night on bad nights..). It is the first thing I think of when I wake up in the morning.
As soon as my eyes open before jabbing my finger with a needle I search for my Dexcom CGM (continuous glucose meter) receiver---I keep it near the middle of my bed by the towel I have laid out for my cats to lie on and push the button to see where my blood sugar is at. Sometimes a few swear words come out at this point. On good days, not so much. :) Fortunately, my sweet cats are good at taking away some of the disappointment on the days it's needed with their warm cuddles and purrs.
Before eating breakfast I give three shots but first calculate how much short-acting insulin my body will require for my meal. Then throughout the day, I keep close tabs on my blood sugar by frequently checking the screen of my continuous glucose meter. And of course there are shots, many more shots and finger pricks. Diabetes is on my mind a LOT!
But I think this makes me a GOOD patient! By thinking about my diabetes and keeping close tabs on it, I generally make wise choices for myself as far as food intake, exercise, stress management and ensuring I receive adequate rest. These measures make me feel I am a very diligent patient. With something that requires so much effort to maintain and affects my health so significantly, how could I not mention it right away to someone I am seeing for an aspect of my health?
After all, the way I feel after the lows and highs is pretty darn crummy. If I come in with bags under my eyes and really exhausted, the blood sugars I may have been up against lately tell a big part of the story.
I was told other patients think of their diabetes more as a side note.. Rather than announcing upfront their diagnosis of this serious chronic health condition, it comes up later, more as a "By the way, I have diabetes.." kind of thing at some point during the course of their work together.
I find this so interesting and think my diabetes, even if not brought up, would be pretty obvious. I don't know how many times I've looked down at my Dexcom CGM in an appointment and decided based on that information to take a bit of insulin or eat a snack. Many times I test my blood sugar right in front of them. Do these "side note diabetes patients" think about their diabetes as much or much at all? How often are they testing their blood sugar?
Generally the things I have been most successful at in life have required much effort on my behalf-- focused concentration, energy, time, etc. Mentioning my diabetes, something I have been successful at maintaining tight control of with next to nothing complications after 26 years, is something I am very proud of! Both the effort I put in and the positive results I have been able to achieve through my hard work. My diabetes is something I do not wish to and cannot hide, especially with my healthcare team!
I guess we are all different though. Maybe some of these people who don't mention their diabetes are just private people. Maybe they have diabetes that is a bit easier to control and doesn't give them a big punch in the face for every last thing they don't do just right. Maybe they take their diabetes in stride and do not let it define them.
Something about being told that other patients do not mention their diabetes (I have been told this by another practitioner before too) as some sort of praise about their character or how they handle their condition does not sit well with me. I feel like their stoicism is being looked upon with much favor. But I wish stoicism was not praised so much. After all, why should we have to hide this big, serious part of our lives?
Praise of stoicism regarding a diabetes is not such a new thing.. I remember in college the response of some students on campus learning I had diabetes. They were really shocked as they apparently did not know I had diabetes.
But.. there was this other girl who lived on their floor who made it known what it was she lived with. She heaven forbid.. "wore her pump on her waist and told people she had Type 1 diabetes!" They thought her behavior was atrocious. I was praised, she was not. They were very supportive of the fact that I did not display or talk about this part of myself. They compared her to me in my modesty, and let me know they didn't think it was okay how much she talked about her diabetes and openly announced she had it.
I remember listening and realizing I didn't really talk about my diabetes. It was just something I dealt with. Diagnosed at age 11, it had just become a regular part of my life, something I did. I took good care of myself but wasn't something I needed to rattle on about.
As a matter of fact, back then, I even wore my insulin pump hidden---ALWAYS! I either tucked it into the side of my bra or wore it disguised in a calf band on my inner right calf. A nice little pocket that held my pump away from view from everyone except when I had to take a little insulin. I never purposefully disguised my diabetes as far as delivering insulin via my pump or testing my blood sugar but I guess my condition just fell under the radar from most.
I am very aware of the way diabetes has affected my body in significant ways over the years according to my acupuncturist who reads my pulse and looks at my tongue during my monthly appointments. According to Traditional Chinese Medicine, diabetes can be very hard on the body, especially after many years. This is another reason I see it as significant and worthwhile healthcare practitioners know about my diabetes upfront.
I will keep sharing about my diabetes knowing it means I do a damn good job of managing it. I do not think diabetes is something I should have to hide, so I won't! I no longer wear an insulin pump but when I did I wore it on my waist for many years. My waist/front pocket is also the location I wear my continuous glucose meter receiver as well.
I'm really curious...
Where do you stand on this issue? Do you let others know you have diabetes-- health care practitioners, friends, family, co-workers, etc? Or do you only let it come up if they happen to see you check your blood sugar or take a shot or look at your insulin pump? How would you feel if you were praised for being stoic about keeping your diabetes to yourself? Do you wear your insulin pump or CGM in plain sight?
In Peace & Wellness,
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