Immediately upon our diagnosis, we are inundated with information about diabetes. In the hospital or with our doctors and Certified Diabetes Educators (CDE), we’re taught the basics of how to manage our type 1 diabetes and sent home with insulin, a potentially dangerous drug if used without guidance, to self-administer and figure out what works and what doesn’t as we move forward. With type 2 diabetes, we’re tasked with determining the magical mixture of diet, exercise, and medication to keep our bodies healthy and attempt to slow the progression of the disease. With gestational diabetes, we’re monitoring so many data points trying to keep our baby growing and healthy that adding diabetes to the mix is enough to cause an information overload and mental meltdown.
In our visits with our healthcare team, we receive education from our healthcare providers, but we’re also surrounded by posters, handouts, pamphlets, magazines, and all sorts of literature issuing the do’s and don’ts of our new life with diabetes. On top of all that, we have to keep up with our personal health history, health needs, and all the data points that are incorporated into a life with a chronic condition.
Then there are the fears, the dire warnings of diabetes complications, and the well-meaning folks who feel the need to share with us the story of their family member who lost their foot, or went blind, or had to be put on kidney dialysis. Sometimes we encounter a physician who is having a rough day, seeing patients that they care about not taking care of themselves, and we receive a misappropriated stern talking to about how we need to take better control of our diabetes. And it’s not that these folks are misinformed, but more that the motivation for their information exists in fear instead of hope.
Diabetes is a chronic illness, and we can’t live our lives waiting for the next awful thing to happen. There has to be life after diagnosis, and we need to find a way to take on information without creating a pile of anxiety.
We also wrestle with our own imaginations about diabetes complications. We ask ourselves all kinds of questions, somewhat grounded in truth, mashed up with our own creative nightmares and fantasies. The internal monolog can run rampant.
“Was that cut on my foot there yesterday? Did I step on something? Will this heal or will it get infected? At what point does a foot get amputated? Are peg legs really a thing? Do all canes have swords in their handles?”
“Is my heart pounding because I have heart disease? Is this an anxiety attack? Am I going to die? I think I’m going to faint. Do goats faint because they have diabetes and nobody knows it?”
“Is my vision getting worse because I’m getting older, or because of diabetes? Am I going blind? Am I low? What is that beeping?”
Life with diabetes can be overwhelming, sometimes extreme, and usually with a dash of ludicrous. Even when you feel like you’re doing “all the right things,” diabetes still doesn’t always make sense.
The people that we rely on the most to help us survive our impromptu romps through the nightmarish land of diabetes fantasy and curious complications are our family members and friends who know us best. We don’t always like to share when we’re struggling with something diabetes related, so we need those folks who can see through our poker face, and be there to support us and keep us grounded and motivated.
In a time when fake news and false information seems to have the world in its grip, it’s time that we, as people with chronic illness, stay rooted in reality. So how do you manage the information overload? How do you latch on to what’s necessary in the moment and shelve all the other stuff until you need it?
Practice self-care. Part of self-care is also being self-aware, acknowledging the things that set you back and the things that move you forward. It can be difficult to put your needs and your health ahead of other obligations in some circumstances, but there’s truth to the adage of putting your own oxygen mask on first. Don’t feel guilty about making time to exercise, or to plan meals, or to call about insurance needs.
Speak up. If a family member keeps bringing up diabetes-related complications as a threat to “inspire” you to take better care of your diabetes but the negative talk instead makes you retreat further away from self-care, voice that concern. Be aware of how the doom and gloom talk makes you feel, and be honest about those feelings. Don’t pretend that you’re fine hearing about Great Aunt Ethel’s amputated leg.
Work smarter, not harder. New information, technologies, and therapies to help us live well with diabetes seem to be coming out more and more rapidly. If the tools you are using to manage your diabetes are not working to your satisfaction, ask your healthcare provider about other options. Diabetes is not one size fits all, and odds are good that there is something out there that can make your living with diabetes easier.
Seek credible information. Keep a running list of things you want more information on and find accurate answers from reliable sources. Your healthcare team is there to answer your questions, so don’t let fear and uncertainty keep you from asking. And if they aren’t hitting the mark for you, consult with your PWD peers for guidance. Peer-to-peer support, in combination with medical advice, can get you where you want to go [1, 2].
Take a break. Sometimes in all the overload of managing diabetes, we forget about those activities that put the wind back in our sails. Trying to make time for hobbies, a bike ride, an hour at the gym, or a walk through the neighborhood can help you clear your head and refocus on what is essential. When you get frustrated with diabetes, step away from it for a few moments, and try to focus on something that you enjoy that can be a reminder for why you work so hard.
Ask for support. Tap the friends and family who motivate you for help when you need it. Diabetes can be a heavy burden to carry on your own all the time, so lean on your support team when you can. And if you’re struggling to find a support team, talk with your healthcare providers to see if they know of local support groups or resources. Your team is out there; you just need to find them. They’re waiting to meet you.
- Wentzer HS, Bygholm A. Narratives of empowerment and compliance: Studies of communication in online patient support groups. Int J Med Inform. 2013;82(12):e386-94. DOI: http://dx.doi.org/10.1016/j.ijmedinf.2013.01.008. PubMed PMID: 23523082.
- Hillard ME, Sparling KM, Hitchcock J, Oser TK, Hood KK. The emerging diabetes online community. Curr Diabetes Rev. 2015;11(4):261-72. DOI: http://dx.doi.org/10.2174/1573399811666150421123448. PubMed PMID: 25901500; PubMed Central PMCID: PMC4586085.