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Breaking the Silence: Confronting Shame in the Diabetes Community

The feeling of shame can be very common when living with type 1 diabetes (T1D). Shame is a feeling of distress, guilt or humiliation when we feel that we’ve done something wrong. How can anyone live up perfectly to the demands of diabetes without doing something “wrong”? It’s impossible to predict every low and high blood sugar! Between carb counting, the unpredictable effects of some meals and insulin doses, handling sick days, renewing prescriptions, appointments (and the list goes on!) – add these tasks on top of everyday life and it’s easy to feel like we aren’t doing enough, or we aren’t good enough.

Shame can negatively impact our mental health which of course can then impact our physical health. How we manage our feelings of shame can look different for each person living with T1D. For some, they may avoid aspects of our self-care to avoid shame. This might mean avoiding checking blood glucose levels so that they don’t see a high blood sugar reading or avoid a doctor’s appointments so that they can’t hear bad news. That person can usually recognize that this isn’t helpful, yet it is a way to minimize stress. Shame may also show up as anger and we may look to blame and shift the responsibility towards others. On the other hand, we may do the opposite and try to control everything related to blood sugars by minimizing variables. For example: eating a restrictive diet, not engaging in physical activity, avoiding social events, avoiding travel, etc. Living a life limited by T1D can often lead to diabetes burnout. Lastly, some may cope with shame with substance abuse which in turn can also cause havoc on blood glucose levels.

The examples above may not help resolve feelings of shame. Instead, identifying the source of shame and why that feeling is coming up can be a good place to start.  However, learning how to understand and process our feelings is not easy. This tool can be helpful in identifying more specific feelings that might help you understand why you are feeling what you are feeling: https://feelingswheel.com. We recommend taking a screenshot of this wheel, saving it on your phone or printing it for easy access.

In addition to identifying how we feel, we need to give ourselves grace, forgiveness, and compassion. There’s no way to perfectly manage T1D or our health in general! We can only do our best, and remember, T1D has a mind of its own which we cannot control! As health care providers, we often hear someone living with T1D sheepishly admit “I don’t like counting carbohydrates” or “I don’t needles” …. Of course you don’t! This is a very normal reaction! You are normal for feeling that way.  We acknowledge that these behaviours can be challenging, and we want to work with you on how T1D can fit into your life and help you find strategies that can make T1D behaviors a little easier.

Self-acceptance doesn’t happen overnight, and it may take time to shift those negative thoughts into positive ones. Strategies such as practicing affirmations, gratitude and journaling can help reframe some of your thinking to ultimately feel some relief while living with T1D.  Lastly it may be helpful to talk it out. Connect with others in the T1D community, a loved one or your health care provider to express your feelings and challenges – we are here for you.

If you are or someone you know needs help with substance abuse, please visit: https://www.canada.ca/en/health-canada/services/substance-use/get-help-with-substance-use.html

Further reading, references and resources:

https://jdrf.ca/stigma-and-type-1-diabetes/#:~:text=Experiencing%20this%20type%20of%20stigma,with%20friends%20and%20mental%20health.

https://www.knowdiabetes.org.uk/blog/shame/

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