The ungifting of control

My T1D Tattoo, means "I am better than my highs and lows.";
I had spent the majority of my childhood truly believing I was in control of my condition, that nothing except me was the driving factor on the path to “perfectly” managing my disease. Some may call this internal phenomenon being a control freak or perfectionist, but I call it trying to be the best person with T1D I can be, at least, I used to.

If there’s anything I can advise for a person recently diagnosed, it’s the following: don’t be so hard on yourself and realize that you are human despite your condition. Feeling this intensely about control leads to a tense self and tense lifestyle. I frequently am told to relax and I know how much of my other behavior is a reflection of how I feel about my T1D. This is a lot easier of a motto to give as advice than to realize for yourself, but I’m attempting to consciously work on living it. The first step? Breathe.

I put a lot of pressure on myself living as a person with T1D, to always have good blood sugars, to abstain from over-indulging behaviors like having a dessert or a few alcoholic beverages or not going to the gym too long for fear of lows or, God forbid, “dead in bed syndrome.” Sometimes these fears and actions are warranted, but, mostly, they disable me from living a “normal”, full life if I let them feed. I can’t let myself be driven by these thoughts, because they are counterproductive, and if you know these feelings as well as I do, I urge you to continue on this path of proactiveness, self-awareness, and self-help with me.

My family does not help me manage my condition. They never have (because I never really let them). I took the reigns very early on in my diagnosis, because I wanted this control. I didn’t really give them a choice, but they were also happy to see that I was confident in managing it. Little do loved ones know, despite control and if you’re as bad at me at being vocal about your frustrations, despite compliance, the best caretakers still need care too. My parents may have helped pay for my medications early on in my life or listened to my venting, but, for the last 14 years, it’s been me pricking my finger, working towards a good A1C, and giving myself shots.

I don’t feel sorry for myself. That’s another piece of advice that I’d give to anyone recently diagnosed or managing the condition - don’t feel sorry for yourself. If you see yourself as a victim of circumstance, you will live your life as a victim. Be the protagonist. We all have something. For people with T1D, we know all too well how much of a “something” ours is. That’s why we must be grateful for the other things that life gives us - that we can manage our conditions, that we have the resources too, that we have our loved ones to support us, etc.

Murphy’s law will tell you what comes up must come down. You can ride a good management wave, but you’ll end up coming to shore and having to adjust again at some point. Life is a series of ups and downs. It’s linear. There’s no end, but there are always new beginnings. Cycles are inevitable, but we should learn to value these cycles as exciting opportunities to develop fresh perspectives on our lives and selves.

It’s not over until it ends, and what a waste of life it is to think “until it’s over.” Life is fragile. Life is short. Life is uncomfortable. Life is a series of obstacles. Life is beautiful. Life is ours to embrace.

Don’t try to control the things you can’t. Be a manager. Be kind to yourself. Be confident. Be brave. Be strong. Ask for help when you need it. Don’t put the world on your shoulders. I’m telling this to myself as much as I am telling you. We are better than our conditions. Though we have our own “normal” as people with T1D, we are “normal.” We are human, crazy, loving, ordinary humans.

Ride the waves, crash on shore, get up and do it again. Worry is your least valuable warrior while fighting the T1D battle. You won’t always be able to control T1D. That’s just the cold hard truth. Once you learn to accept that you can manage it, but not always control it early on in life, you will learn to relax, love and accept yourself more truthfully. 

That is a gift I wish for all people with T1D.

Xx, Julia Rose.


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