A few weeks ago, I was with a group of friends. My blood sugars that day (and the preceding evening) had been very uncooperative, bouncing up and down, refusing to land anywhere in the middle. No matter what I did, it seemed like my body’s response was simply OFF. I was never in any immediate danger — I wear a continuous glucose monitor (CGM) and so I caught the highs before DKA range and the lows before dangerous hypoglycemia range. But nevertheless, it was one of those days when it seemed like no matter what I did, the response from my body was unpredictable, and it felt like more than half my mental energy was devoted to simply managing my own unwieldy blood glucose.
As a result of all this, by the end of that day I was simply burnt out. I was sad, pissed off, and just DONE with this stupid disease. And my face showed it. My friends, all very well intentioned, wanted to help. They asked if I needed some sugar, or if there was anything they could do in a practical way. Of course, there wasn’t. I explained that I was perfectly safe and that I was simply tired of my body being unpredictable and uncooperative with me. I wasn’t upset because of any physical symptom from diabetes; no, I was feeling diabetes emotional burnout. And as I was explaining this to them, I understood that they could not, and never will, really “get it” about what I’m talking about. If you’re not living with this disease, you simply can’t completely understand. Diabetes has a unique emotional toll that it can exact on us, and unless you’ve had to deal with the daily management of this disease, you can’t really know what it feels like.
To me, a day like that feels abusive — when you do everything you “should” do, and this disease still refuses to show any kindness or provide any kind of reward for the incredible amount of hard work and mental energy you’re putting out, it feels abusive. When every time you respond to one extreme your body simply sends you shooting off toward the other extreme, guaranteeing that in another 20–30 minutes you’ll be once again combating your blood glucose, it feels abusive. Diabetes has this way of making us work the hardest when it provides the least amount of reward for us.
Perhaps the best way to explain this to someone without diabetes is that it can feel like having an unpredictable, vindictive, and tyrannical boss. But that only hints at it, because a boss only controls part of you life, and only has power over you for a certain number of hours. Imagine that horrible boss has the power to eventually take away your kidney, or one of your extremities, or give you nerve damage. Imagine that boss is overseeing you 24 hours a day. And imagine that boss is living inside your own head, invading every single second of your life. THAT is diabetes.
Now, this is all a dire picture I’m painting here, and we Diabetians don’t go around feeling abused all the time — we’re not a defeated group. But when that emotional burnout sets in (and it does set in from time to time for all of us), the feeling is one that the rest of the world simply can’t truly understand. That’s OK, of course — it’s not that I expected my friends to know how I felt; and I appreciated that their responses were concerned and trying to help. It’s not like I resented them in that moment. I resented diabetes in that moment, and I resented it even more because I could see that my feeling of burnout and anger and fatigue was something I couldn’t even explain to them! It felt lonely, and there was no way around that.
Diabetes is manageable, and we Diabetians are resilient. But that doesn’t make this disease easy to live with. Some days, it just makes you want to scream!
Want to learn more about maintaining your mental health with diabetes? Read “Dealing With Diabetes and Depression,” “Reducing Diabetes Stress: Alternative Treatments” and “Relaxation Techniques for Stressful Times.”
Source URL: https://www.diabetesselfmanagement.com/blog/emotional-toll-diabetes/
Scott Coulter: Scott Coulter is a freelance writer diagnosed with Type 1 diabetes at age 15. He has spent a great deal of time learning how to successfully manage his blood sugar and enjoys writing about his diabetes management experiences. Also a longtime Philadelphia-based musician, Scott is married to a beautiful, supportive, extraordinary wife, and together they are the proud parents of four cats. (Scott Coulter is not a medical professional.)
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