There's definitely a difference in the kinds of guilt experienced by those who have type 1 and those whose loved ones have type 1 (namely, parents). Parents of type 1s may experience guilt in several ways: guilt that their child is sick, guilt that they couldn't prevent it, that they couldn't protect them, that they could have caught it sooner, and so on. Upon diagnosis parents often need to be reassured that there was nothing they could have done to cause their child's diabetes, or anything they could have done to prevent it. Very often, it is parents' keen eye and instinct that bring their child in to the doctor or the emergency room. They took care of their children, as most parents do, to the best of their knowledge and ability.
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| Parents of type 1 answered a 50/50 split of feeling guilt regarding their child's diagnosis. (Instagram: @diabetictruths) |
For those who have type 1 themselves, the relationship with guilt can be more insidious. Even for those who are diagnosed young (myself included), guilt will worm its way into thoughts and feelings about diabetes. I have a vivid memory of having to be picked up early from ballet class after a low at around age 10. After 15 minutes of sitting and wallowing in my sorrow, my mother arrived to get me. "Sorry I'm such a burden on you and Dad," I spat as a hello. I remember her being appalled - her and my father never complained about having to take care of me. Why would I say such a thing? Was I being a drama queen? Not exactly.
Feeling like a burden
When it comes to feeling like a burden, it seems that I was far from alone in my feelings. What I've found - on social media, at work, or listening to different type 1 podcasts - is that the majority of type 1s struggle with this feeling from time to time.
However, this issue isn't just specific to diabetes. The Kidney Disease Quality of Life Survey (KDQOL), administered to dialysis patients ages 18 and older, specifically asks the same question I posed to other type 1s on my Instagram. The KDQOL asks in its "True or False" section how true the statement "I feel like a burden on my family" is. Feelings of guilt and shame aren't just things that diabetics struggle with - it seems that any chronic illness that significantly impacts daily life poses a risk of this side effect.
On the upside, it seems that people living with type 1 don't feel this way all of the time. More commonly, they feel this way on bad diabetes days. Like all negative thoughts, guilt tends to creep up on us during difficult moments. If our sugar levels are really out of whack and we have to rely heavily on our loved ones, we're more prone to feel like a burden or a bother.
Also, if diabetes interferes with plans or social activities, it seems the majority of type 1s are reluctant to break the news to those they are spending time with. It would make sense that this is reluctance stems from that same fear - feeling like a burden. Ruining the day for everyone. Interrupting the fun with your diabetes. These thoughts can be seriously detrimental to our state of mind - thoughts like these increase shame, guilt and embarrassment, which can lower our sense of self-worth.
However, this issue isn't just specific to diabetes. The Kidney Disease Quality of Life Survey (KDQOL), administered to dialysis patients ages 18 and older, specifically asks the same question I posed to other type 1s on my Instagram. The KDQOL asks in its "True or False" section how true the statement "I feel like a burden on my family" is. Feelings of guilt and shame aren't just things that diabetics struggle with - it seems that any chronic illness that significantly impacts daily life poses a risk of this side effect.
On the upside, it seems that people living with type 1 don't feel this way all of the time. More commonly, they feel this way on bad diabetes days. Like all negative thoughts, guilt tends to creep up on us during difficult moments. If our sugar levels are really out of whack and we have to rely heavily on our loved ones, we're more prone to feel like a burden or a bother. Also, if diabetes interferes with plans or social activities, it seems the majority of type 1s are reluctant to break the news to those they are spending time with. It would make sense that this is reluctance stems from that same fear - feeling like a burden. Ruining the day for everyone. Interrupting the fun with your diabetes. These thoughts can be seriously detrimental to our state of mind - thoughts like these increase shame, guilt and embarrassment, which can lower our sense of self-worth.
Why?
Guilt and shame are feelings. Feelings are a direct result of our thoughts - how we perceive what is going on around us. So what thoughts are we having that feed these feelings of guilt?
I have to cut this hike short. My sugar's going low.
This is awful. I'm ruining everyone's day.
My mom gets so worried about me. I am such a burden to this family.
The issue with these thoughts is that without realizing it, we are over-identifying with our diabetes. Yes, our moms are worried about us. But is it you yourself that is the stressor on the family? Or is it your diabetes? It's often hard for us to remember - they are two different entities. Parents may have been devastated about our diagnosis, but it is our diabetes they are upset with, not us. We might be upset that we have to cut the hike short, but it's diabetes that interrupted the day, not us.
This isn't to say that we should shirk all responsibilities that come along with diabetes. Even though diabetes is a separate entity, it is still something we have some control over. Rather, this is about changing our thoughts regarding diabetes and ourselves. It's about changing the way you talk to yourself (otherwise referred to as self-talk) about your type 1. Diabetes may be an integral part of who you are, but it is not you yourself.
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