yyIt’s really easy when hindsight bias is always around the corner; when the rest of the world looking in is pointing towards self-help books; when your a1c barely goes up; when you don’t believe it yourself. It’s especially easy when you ‘re looking in on yourself a year later (especially after an amazing weekend). As a social work major, I theoretically should have been practicing self-care and taking care of my mental health. I should have been reaching out to the diabetes community and my circle of friends and family. So many should haves.
You could have done this. You could have done that. These are the steps to take. You control your diabetes. It’s not that hard. Others have it worse. Take a pump vacation. Just deal with it. -What myself and what others were telling me.
It’s not that simple in the moment. It’s not that easy to take advice and want to do anything at the moment. It’s not a snap of the fingers-quick-fix to accept it all again. Especially when you reach a certain level. Sometimes you don’t even know you’re in it until much later.
Even now, I have a hard time admitting it to the world let alone myself. I didn’t fully acknowledge what was happening or what happened until mid-spring of 2014. I was still in the middle of it. But I was hiking up the mountain- trying not fall. I do not think I was “over” it until I arrived at diabetes camp in June.
I think this happens to everyone on occasion- at the end of a long day or a long week and diabetes is not being a friend- and it is being who it truly is- a chronic illness- sometimes I forget about that. T1D- it’s a chronic illness. It’s something- that not everyone is living with. It’s something that needs a lot of attention.
When I looked in the mirror, I hated diabetes and even asked why me. When I stared at my freckled fingers tips, I didn’t want to even check. I was leaving my meter at home, supposedly by accident, but was that a subconscious decision? The pump vacation didn’t work. I was doing even worse on shots. I dreaded changing my pump site- I was leaving it in longer than needed. I wasn’t rotating anymore either. I was barely concerned about diabetes management, but at the same time- I was concerned that I was “failing.”
I didn’t want to talk diabetes. I didn’t want to think diabetes. I wanted out. I wanted the cure that had been promised to me when I was 7. Isn’t it a little late? Where is my cure? Are researchers trying hard enough? Does the FDA not want me to be happy? Do they and insurance companies and medical companies not really care about us? Is it only about the profit?
There I was, the girl who all her life had paraded around; saying “I’m Diabetic” as her fun fact about herself; speaking about diabetes to donors and groups and for school projects; bringing her friends to the walk every year; speaking endlessly about camp; knowing diabetes inadvertently gave her a career and goals for the future; giving her a better understanding; and so much more.
But none of this was registering. None of this was at the forefront of my thinking.
I had been given the majority of the tools I needed to take care of myself and be positive. I somehow swerved out of the typical middle/high school experience. I had actually been warned. When I graduated high school, friends and doctors (especially doctors) warned me, this was a possibility. It happens to almost everyone, and you’ve been going full force all the time. I thought I was invincible. Surely, since I never felt that way in my teen years, it would escape me now.
I was wrong.
But there I was in the fall, 2013, of my junior year of college just trying to get my blood sugars to cooperate with me, struggling to keep up with my commitments, my job, and my school work- and to be honest- not even doing a great enough job (at least- to my standards). My health at this point was at its worst in regards to my thyroid- my numbers were slightly out of range, but my body reacted poorly- which did not help. My insurance was giving me a hard time about getting supplies and endocrinologist appointments. I no longer had access to children medical services to assist with costs when I turned 21 so that dark cloud was everywhere. This was one of the hardest semesters of classes I had taken. I was supposed to be studying for the LSAT already. I was also not feeling my best- physically, mentally, and emotionally. Events from my past were constant memories and nightmares. I was pushing people away. I was canceling endocrinologist appointments, but they also kept getting canceled. Finally, I was trying to do work with Dawgs for Diabetes because I wanted it to really take off- but that was a struggle.
But how do you do that when you hate the mention of diabetes? How do you parade yourself and attempt outreach when all you want to do is hide from diabetes? How do you speak to people about diabetes and being positive and living and thriving when- at that moment you don’t believe it yourself?
I know everything took a hit. I can still see the remnants of my decisions and how I was feeling. I know that all things diabetes took a hit at that time for me. (along with everything else in my life)
I was not blogging. You can see where I pretty much stopped. Claiming I would get back on track.
and this continued. and continued for months. as I wouldn’t admit out loud or even to myself. Going through the motions. This can happen to anyone. but not to me. These feelings come sporadically for people, and often it goes away- but occasionally it comes to stay for a while. The winter of 2013/2014 things started to get easier, and in the spring- I realized and admitted what had happened. It started when I spoke to teens living with T1D at JDRF’s Type 1 Nation in Atlanta in February. My- this is it- I need to believe it. and then-
There I was at the College Diabetes Network Retreat at the beginning of the summer, and for some reason I said it out loud. I said the words I had acknowledged in the spring, but I wouldn’t dare say to a group of people who I had just met. I still do not know why I said it out loud, but just as quickly as it hit that fall- I said it Diabetes Burnout.
I was in Diabetes Burnout.
“Diabetes burnout is the term given to the state of disillusion, frustration and somewhat submission to the condition of diabetes.
Burnout can be characterized by a person’s complete disregard for their blood sugar levels.
They may also miss doctor appointments, forget or avoid taking insulin injections or other diabetic medication, or switch back to unhealthy eating habits.
Often it will be a state of mind that is reached after years of dealing with the condition.
Diabetes burnout is often marked by disregarding blood sugar levels and neglecting an individual’s diet.
What happens in diabetes burnout?
At times of diabetic burnout, a person will often participate in self-destructive behaviors.
Accounts of people who have experienced diabetic burnout report that they are seeking ‘freedom’ from this confining and often frustrating condition.
Burnout is also often accompanied by psychological changes such as:
• Emotional states such as anger, resentment, shame, guilt and helplessness” via Diabetes UK
That’s what this was. In a nutshell with a few variations- because everyone is different.
What I really needed was time and the people who wanted to be there for me. I truly wish I had opened my mouth to reach out. But at the same time- I feel like Diabetes Burnout comes hand in hand with other events or stages in your life. Would I have experienced Burnout or to that extent if my thyroid had been dealt with and acknowledged by my previous doctor? Was the anxiety my thyroid or the burnout (etc, etc)? What if my class load had been different? What if, What if, What if?
What I do know- without Dawgs for Diabetes, I would not have been pulled out of it. If I had not been involved in CASA (court appointed special advocates) training, I wouldn’t have had something non-diabetes to focus on.
I learned an extremely valuable lesson last year; self-care. It has been relentlessly thrown at me since high school and I would “practice” self care. But only when it was convenient for me. I’m a work-a-holic in training. and yes- I know I’m in social work, but still it didn’t click.
I’m looking at this a year later, and I can remember some things clearly. I dreaded Dawgs for Diabetes meetings. I wanted nothing to do with Diabetes Awareness Month. I didn’t even want to go to the JDRF Walk to Cure Diabetes- I have never missed one since being diagnosed.
I am a part of the diabetes generation that has been caught in the middle of everything- specifically change. With all of these tools, new technology, and educational resources we are expected by society to practice perfect diabetes management. We are expected to have THAT a1c. Pressure on us. Pressure on our families. The pressure to keep up with society’s standards is draining for everyone. Even if we preach that we don’t care about those standards, it still impacts us.
And I am JUST now starting to see more about diabetes and mental health. Why has it taken so long- diabetes does impact our lives and our lives impacts our diabetes? Is mental health not included?
And time- honestly time. No one wants to hear time. Everyone wants the quick fix. But sometimes, you have to do your best at that moment (even if it isn’t your usual) and allow time to run its course.
A year ago, I wouldn’t admit burnout. I wouldn’t acknowledge that this is what was going. This past weekend I had the most amazing weekend in my Diabetes “life” that probably tops most of my camp experiences; the JDRF Walk in Athens and the Campus Tour: a Diabetes Perspective by Dawgs for Diaebtes- I am surrounded by the most amazing people. A year ago- I did not think any of this would be possible in my wildest dreams.
But with time, therapy, finally reaching out, and so many other things- the burnout faded into the background. When I think of where I am now, and where I was- it seems like more than a year. I can’t believe I passed my classes. I can’t believe I studied for the LSAT, I can’t believe I kept up with commitments.
But why can’t I believe in myself even if I’ve crashed down to the bottom and formed a crater that’s now filling water- shouldn’t I know I can do it automatically? This is something I constantly struggle with but I have also improved upon this.
When I finally reached out to my friends- I realized who was truly supportive- and those who were- I am forever grateful. Not pushing me to speak. But listening when I finally did. Those who weren’t? Well, I learned a bit.
Self-care is now part of my weekly routine- even if I do absolutely nothing. I can see the difference when I utilize it and when I don’t. I am still working on this- self-care is a struggle for me.
I make sure to be involved in things that have nothing to do with diabetes and nothing to do with Social Work.
I know in the end that point in my life has made me stronger- I never want to go through it again, and I don’t want others to go through it- but more than likely- they will- at some point
and to me- this is just as scary as DKA- another occasional nightmare to add to the list.
I think a few things are important to note-
- Reach out- you may be surprised who will grab your hand to walk through a difficult journey with you or try to pull you out. Don’t close people out.
- SELF-CARE- make sure that you are consistently doing things you enjoy- not just including exercise, sleep, TV- I think something unique to you makes more of a difference. For me it’s reading, crafts, writing, and music.
- It’s okay. This happens. Diabetes does not determine your worth. at all. You can’t be perfect.
- Do what you can in the moment- even if it is sometimes going through the motions.
- Be involved in something that makes a difference for others- the impact is amazing.
- Back off from the diabetes community if you need a break. It will still be there.
- Know that you are a strong person even before you add the diabetes to the mix.
- Believe in yourself.
- Time makes a world of difference.
These are just some of the things I took away from this, and after years of struggling with some of this- I have gotten better at applying it.
Everyone is different, and everyone experiences things differently. Diabetes Burnout is similar to diabetes- because we do not completely understand it yet. Your diabetes may vary, and everyone is on a different point in the diabetes perspective spectrum.
From one of my favorite authors “Rock bottom became the solid foundation on which I rebuilt my life.” J.K. Rowling (I didn’t completely rebuild- but I am such a different person than I was a year ago)
Diabetes Burnout- 1 Year Later
Editor’s Note: This was originally published in October 2014 and was updated for clarity and accuracy in August 2018.
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