Welcome back! After a couple of years of focusing on other spots, I’ve decided to fire up my blog again. Why? Because I find I somethings have things to say that *might* not always fit the view or needs of some editors. Here, at Despite Diabetes, I can focus on what I feel we need to talk about. So I’ll be posting here again from time to time.
I start back with a guest post from my daughter Lauren, the reason this blog exists. Lauren will be contributing often — you’ll love it. Her first this time around is a serious topic. Read on.
For my entire life I have been an open book. This is especially true with my diabetes life. If you’ve read about me (from me, my mom, whomever), you probably think you know my diabetes experience well. And for the most part – good or ugly – you do. But there is one thing I keep very hidden: the loneliness, guilt, and overall mental endurance it takes for me to live with this disease.
Let me give you a little background. I have been living with diabetes for 21 years. I was diagnosed at age six, went through the whole teenage burnout phase, successfully went to college 500 miles away, and came out of the burnout phase and have a flourishing career in Washington, D.C. By the time I was 25 I thought I had it all figured out. This isn’t that difficultI often thought to myself. I would frequently question why I was the way I was when I was a teenager. I should have just tried a little harder, I thought, judging my teen self.
This past May, I went through a break up; an unexpected, dumped via text by my boyfriend of 2.5 years kind of break up. Instead of getting bogged down by this, I made the decision to enjoy my summer and see it as an opportunity to focus on myself. Because really, it was clear almost right away we did not belong together. But here’s the thing: I did not realize how much I relied on my ex-boyfriend to assist me with day-to-day care until I was back to managing it on my own. Without that daily support, the burnout slowly eeked back into my life.
First, I didn’t want to wear my pump anymore. Then, I didn’t want to wear my CGM. Then, I didn’t want to check my blood sugar via finger prick six times a day. And I remembered why burnout was so easy to slide into: I cannot describe to you how incredible it feels to just ignore my diabetes management. Whenever something difficult happens in my life, I want to put diabetes in the back seat. It is like by freeing my mind from diabetes, (despite the sick feeling of out of wack blood sugars), I am free to focus on the rest of my life. It’s a powerful urge, and one I had learned to ignore before. But this summer, I gave in. Old habits die hard.
My burnout as an adult is completely different than my burnout as a teen, but it stems from the same addiction. The irony is: I am led to it by a nearly unquenchable desire to be free of diabetes, and yet I feel my loneliest when I am in these burn out phases. I cannot describe how alone I feel when I think about how I will be dealing with diabetes for the rest of my life. Yet, In my lonely, dark space, I feel content. It is a familiar place, but I am not happy. I am not sleeping well, I am having a difficult time focusing at work, I am emotional. I think about diabetes way more than I do when I am laser focused on my care. (Do you see the irony there?) I don’t want to be a burden to my friends and family by complaining to them about how difficult it has been for me, so I find myself lying to the people who love me about how I am doing. I wake up everyday and say, I will focus on my diabetes today. Nothing changes.
Then, a few weeks ago, I saw a tweet:
Wow. I am not alone in this dark place.
The diabetes community has taken strides in addressing the needs of teenagers with burnout, but what about us adults? Since seeing this tweet, I have thought about the mentality of living with diabetes a lot. We look at our CGM downloads and labs over and over again, but we never discuss how much it takes a toll on our mental health.
I reached my breaking point. I called my mom on my way to work and confessed that I wasn’t doing well (thank you to all of the nice people who saw me sobbing and didn’t give me dirty looks, I guess it’s normal to cry walking down the street in D.C.?) I am fortunate that she is calm and understanding and has helped me develop a plan to get back to normal. But what about everyone else? And why did it take me months of feeling this way before I felt I could confide in someone? I think that is time for the diabetes community to focus on mental health.
Right now, I have to work my way back out of this burn out, very much like an addiction, starting with step 1. Later, when I move back to a place of relative peace with this insipid disease, I’m going to work at finding ways to help adults. Until then, as always, Ill be an open book. If I can fight my shame and be open, perhaps more will follow. If only it all were as easy as I make it look in this summer bike ride photo.