Throughout the month of November, people living with and loving someone with diabetes band together to raise awareness about living with the condition, with November 14th marking the internationally recognized World Diabetes Day.
This date marks the birthday of Sir Frederick Banting, who together with Charles Best, discovered insulin and made it available to patients. Prior to 1922, a diagnosis of type 1 diabetes was simply a death sentence. Thanks to their discovery and many other advancements over the last century, people with diabetes are able to live well and thrive with the condition.
However, people with all types of diabetes continue to face many serious issues as a result of their health condition.
This year, we asked our audience,
“What is the one most important issue that you are facing as a person with diabetes? What do you want people to know?”
We received a lot of input from the community and noticed a recurring theme highlighting the financial and emotional burdens of living with diabetes. Some responses are highlighted below. Do you agree? What do you think are the most important issues facing you as a person living with or loving someone with diabetes? Please share this article and your perspectives in the comments.
“Fighting for individualized healthcare has been a recurrring theme throughout my life with type 1 diabetes. I want heathcare professionals to universally recognize the importance of the individual’s specific circumstances in most appropriately treating their patients. I shouldn’t have to accept blanketed protocols, like early labor induction or statin therapy, when my diabetes control and overall health status do not actually necessitate it.”
“No disease should ever be a punchline of a joke. The media continues to perpetuate a stigma that leave people with diabetes feeling shame, which can in turn make this disease even more isolating than it already is. The reason we must be open and vocal about our disease is to educate and stop the stigma.”
“What I would most like people to understand is that diabetes is not about the needles – it’s about the day in, day out mental exhaustion of never being able to completely stop thinking about your blood sugar. It’s always on my mind. On the pragmatic level, insurance. I just tallied it up and we spent $12k last year on premiums and copays. That’s insanity.”
“I wish I could afford the technology… it would be great to be able to put a cgm on my daughter to see if she even liked using one, but to try it would cost me over $2,000. Then I worry that even if it did work, insurance would cut test strip coverage. I don’t mind paying for care, but insulin costs aside (which is another story altogether!), this is expensive.”
“I want people to know that diabetes is hard work but manageable. And, that uncontrolled, diabetes will rob you of your body. I also want people to know that no two days are the same. It’s a moving target. What worked today, may not work tomorrow because of stress, a cold, not enough exercise – the list goes on and on. Diabetes is a 24/7 disease. It’s always on our minds.”
“I feel like the overall out of pocket cost for test strips, insulin, external medical device supplies, insurance premiums is getting worse and worse. Affording and fighting for the things both myself and my daughter need is stressful and exhausting. I feel like for me, that part of the disease is far more stressful than having the actual disease and then you add the careful and precise management that is done daily for my daughter and I to survive and it’s just exhausting. It’s getting worse and worse and I fear that one day we simply won’t be able to afford it all. Things need to change as far as healthcare goes for people with type one.”
“I want people to know just how necessary CGM and FGM devices are in order to achieve actual control and management of T1D. The out of pocket costs associated with T1D are high and we rely heavily upon medical technology as opposed to simply a drug therefore, there needs to be recognition that coverage of these devices must also be included… Also, low carb diets are the healthiest!”
“Dating with diabetes — specifically 2 things; 1) trying to balance how much you share so they know it’s really consuming and important to you but not too much that it scares them away. and 2) trying to avoid changing diabetes management decisions, specifically around dosing and alarm levels. I find I sometimes make different dosing decisions or slightly change alarm thresholds to avoid my cgm going off overnight etc. I wish I could always manage my diabetes as I would do if I was always alone, but I find it difficult to do in practice.”
“Type one diabetics deserve normal blood sugars and there is a way to achieve them by following Dr. Bernstein’s protocol, which is a low carb diet and dosing insulin properly. All diabetics should read the book The Diabetes Solution by Dr. Richard K. Bernstein and implement his protocol into your life. It saved my life and now it is saving my 3-year-old daughter. It’s great to be off the blood sugar rollercoaster.”
“What I wish is that people knew the true struggle of it, but not even T1D family knows the true reality of that, so I’m not sure that’s something that can come true. At the moment, the current most important thing I’m facing, in regards to T1D and mental health, is not feeling like I’m letting down my rugby team when things just aren’t working out that day. Sure, the majority of the time everything is fine, but sometimes a low or high will just happen and we have to deal with it. I do so much extra to make things run as smooth as possible–not eating after a certain time the night before to ensure perfect numbers in the morning even though I may be hungry, waking/eating at 5am so there’s no insulin on board at game time, or if I can’t wake early not eating enough carbs to fuel me for the game but keep my levels in the right range, risking lows from taking insulin before a game to combat spikes due to adrenaline and hoping you guessed for it correctly, etc. Also during the games, thinking about whether or not I’m high or low, or if I need to save energy, instead of focusing on the game. My teammates and coaches deserve a teammate who is completely focused on the game, can always bring their A game, is consistent, etc. Most of the time I can be that person, but it takes so much to do so, and sometimes it’s not enough.”
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Read more about continuous glucose monitor (CGM), cost of diabetes, cost of health care, cost of insulin, diabetes management, diabetes technology, exercise, insulin, Intensive management, low-carb diet, mental health, World Diabetes Day (WDD).