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Beta Cell Survivor Guilt

Earlier this week, I had the great privilege of attending the MasterLab workshop in diabetes advocacy. A great big thank you to Diabetes Advocates, a component of the Diabetes Hands Foundation, for hosting an inspiring and informative panel of speakers for the day.

Dr. Mark Heyman (who has a website that is definitely worth exploring) presented one of the talks that really resonated with me as a t1d parent. The talk centered on the importance of taking care of oneself. The take home message is that if we don’t take care of ourselves, we won’t have anything to offer others. I think a lot of parents and other caregivers find this challenging. There are a multitude of logistical and other issues that can get in the way of finding time for ourselves. It can become even more complicated when one is caring for a child with a chronic medical condition such as t1d.

Since my son’s diagnosis almost 6 years ago, I’ve gotten better about taking care of myself. The logistics of doing that have gotten somewhat easier as he has become more independent in his t1d management. I also have become more aware of the impact of caregiver burnout on my interactions with other humans. I can be a much more positive influence when I’m taking care of myself.

The other thing that I have realized over the years is that a key part of taking care of myself is being able to check out sometimes. I need to not feel like I have to respond to the needs of others for some period of time. It doesn’t necessarily have to be for a long period of time, and it doesn’t need to happen every day. However, it does need to happen occasionally if I stand any chance of being remotely patient with the rest of the world.

Here’s the kicker. When I check out, I have the luxury of not having to think about t1d. My fully functioning pancreas allows me to eat without estimating the carb count of the food on the plate in front of me. I don’t need to think about my current blood sugar, whether a basal rate needs to be adjusted because of exercise, or whether an insulin pump site is working well. Until there is a cure (please, please, please, let there be a cure), my son will never have that luxury. He and roughly 1.25 million other Americans living with t1d have to be constantly on guard in order to keep themselves safe. I do not want to minimize the technological advances that make management easier. Things have improved immensely in the relatively short time since Liam’s diagnosis. However, even when a closed loop system goes to market, some level of vigilance will continue to be required. Sites will still fail occasionally. The bottom line is that there is no break for those with t1d.

I know it makes no sense, but I feel incredibly guilty when I don’t have to think about t1d. Liam doesn’t begrudge me my fully functioning pancreas. It doesn’t make his load lighter when I feel guilty. However, it does improve his life significantly when his mom is more pleasant, which requires that I be able to check out occasionally. I am grateful to have been reminded of how critical it is to take time to recharge my batteries, for the sake of everyone in my life.

Written by Susan Ramsey