For years, qualitative studies looking into the inherent challenges of achieving diabetes management goals have focused on children and adolescents. Until recently, the group that makes up the largest percentage of those living with type 1 diabetes — adults — has been largely ignored.
Not surprisingly for those who happen to fall into that category, new research has revealed that adults living with type 1 diabetes face many of their own unique challenges when it comes to maintaining healthy blood sugars and reaching set goals. The study, published in ADA, used electronic health data of T1D adults in the US to assess the burden of disease based on A1C and rate of complications such as DKA and microvascular disease.
In addition to discovering a high correlation between A1Cs over 9 and acute complications, this study also revealed that the number of adult diabetics with A1Cs under 7 was only about 20%, far less than current estimates.
Why is it that the cohort of diabetics once thought to be the least at risk for suffering from poor control are doing just that?
Some light is being shed on this issue by a handful of studies into the emotional and personal challenges faced by T1D adults and anecdotal reports from those living with the condition.
Factors That Make Diabetes Management Difficult for Adults
While it is true that children and teenagers have some very specific challenges that make managing their diabetes difficult, it is unrealistic to think that diabetic adults are free from similar burdens. Hormones and emotional development may not play as large a role in adulthood, but there are many factors that can cause diabetes to take a back seat or be more difficult than normal to manage.
Career and Employment
One complicating factor younger diabetics certainly don’t have to worry about is building and maintaining a career. Even a job that isn’t likely to lead to vertical growth can easily get in the way of good management habits. Many T1Ds worry that their diabetes will be seen as a weakness and go to great lengths to hide it from coworkers and supervisors. For a condition that requires constant attention, this can quickly lead to reduced control, even if it only affects eight hours out of the day.
Romantic relationships are complex even without the addition of a chronic illness. So what happens when you add this complicating factor into the mix? Studies have shown that diabetics with supportive partners often achieve better glycemic control than those without. And that those who have experienced severe hypoglycemic episodes see higher stress levels and more arguments within their relationships.
Of course, complications aren’t only seen in long-term relationships.
Starting a new romance as a PWD presents its own unique set of challenges, both to the budding relationship and to the management of the condition.
New partners may not know how to react to or treat a person with diabetes. And they certainly aren’t likely to support the person the way they need to right off the bat. New relationships also likely mean a change in schedule, which can be a hindrance to tight control.
One of the biggest challenges many adults will face is having and raising children. As a person with diabetes, especially a woman who must go through the hormonal changes associated with pregnancy and birth, this can be an especially daunting task.
Hormones aside, adding a baby to the family means changes to schedules (or no predictable schedule at all), sleep disruptions, and much less free time.
Finding a moment to change a set or check blood sugar can be difficult if not downright impossible.
One study that looked into the psychosocial challenges of living with diabetes found an inverse relationship between diabetes tech and the level of support received. While, overall, increased use of technology such as pumps and CGMs resulted in better control, partners of diabetics reported that they became less involved and even felt excluded from their partner’s treatment after higher-tech devices were introduced.
Fear and Anxiety About the Future
For many adults with diabetes, fear of complications, especially long-term problems like neuropathy and vision impairment, are motivators to keep tight control. However, for many people, these fear-tactics, while often still used by doctors, can have a very negative impact on their diabetes management. The anxiety brought on by thoughts of a bleak future is more than enough to overwhelm them, especially if they already feel that they don’t have the power to prevent it. This can lead to the avoidance of healthy diabetic habits as a means to avoid the anxiety associated with them.
Adult T1Ds Need Specialized Support
With so many challenges facing adults with T1D, it is that much more important that we find ways to better support ourselves and seek support from those around us.
Spouses and Family
Study after study has singled out family support as one of the largest factors contributing to the success of adolescents with diabetes. It should come as no surprise that this remains true even as a diabetic grows up and leaves the house.
Whether your family support is a parent, friend, or spouse, it is important that you talk with them openly about the challenges you are facing with your diabetes.
But even beyond that, you need to find a way to communicate what kind of support will be most beneficial to you.
If you prefer to handle your condition alone, you may still find yourself feeling abandoned if your family does not step up to help when you are sick or dealing with an especially hard week at work. On the flip side, you may like feeling that your family is always watching out for you, but find their constant “checking in” to be patronizing. In any case, communicating your needs and preferences upfront is the only way to avoid these conflicts.
Changing Life Situations
For friends and family of PWDs, it is especially important to remember that diabetes is a full-time job. It doesn’t get suddenly easier to manage just because there is a newborn in the house or because of a promotion at work.
When changes occur and challenges arise, that’s when a diabetic needs the most support. You may not be able to take over their diabetes management, but any help you can offer — babysitting, cleaning the house, picking up groceries — will free up time for them to give their diabetes some much-needed attention.
Lastly, don’t underestimate the power of the community. Whether you are an adult who has just been diagnosed or someone who has lived with this for half a century, having other diabetics to talk to is immensely beneficial. No amount of communicating with your spouse or mother about what you’re going through will ever be as powerful as talking to someone who knows exactly how you’re feeling.
If you’re one of the 80% of adult diabetics struggling to meet your goals, just remember, you don’t have to go at it alone. In addition to your family, friends, and doctor, there are literally millions of people just like you in the world. They know all the challenges that come with “adulting” with diabetes, and just like you, they would love someone to talk to.