Type 1 and Guilt

There is a specter floating around in the type 1 community. It haunts people and parents living with type 1, coming out to play during our lowest moments. The specter is guilt. Feeling like a burden.

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.

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.

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.

The Complication That Nobody's Talking About

Part of the job of being diabetic is being bombarded with unpleasant information.  Commercials, pamphlets, homework, ignorant strangers--they all love to chime in and pester us with the statistics of diabetes complications. Since about 4th grade I've learned to keep only one ear open. You can only hear such facts so many times before you start to really panic. But each time a new one arose, I was educated on it, talked about it, then tucked it away in a neat little box in the back of my mind.

However, there is a certain complication that I never heard about on TV.  I never was informed about it in the doctor's office. I never had an ignorant stranger tell me an incorrect fact about it (sadly). In fact, I didn't even know that it was a statistically significant, existent, real complication until my college years. Although my common sense had brought me to the conclusion quite awhile before.

People with diabetes are approximately twice as likely to develop depression or anxiety than people without. This can be said of many other chronic illnesses and disabilities. While this complication was not out in the open to me until young adulthood, the more time I spend with the knowledge, the more sense it makes. Diabetes is a constant weight on the back of your mind. No matter how well-adjusted you are, no matter how brave, you constantly have the pull of it slowing you down.  You have to think ten steps ahead: will I go to the gym today? Should I not give insulin for this snack? Do I take my pump off now? What if the gym is then closed? What if?

There is such a great deal of subconscious what-iffing in diabetes that it now seems strange to me that someone wouldn't develop depression or anxiety. "What-ifs" are such a major component of anxiety disorders in particular--so what can be expected to happen when they are so deeply ingrained in your daily life? As people with diabetes we constantly have a weight attached to us. And if we don't, we run the risk of damaging our bodies. The constant nagging thought at the back of our mind is bigger than homework, bigger than relationships, bigger than work. It is our survival.

        https://s-media-cache-ak0.pinimg.com
/736x/b9/6f/9f/b96f9f379063be6a3ffe3ba3f1bc8b2d.jpg

Of course this isn't to say that people with diabetes are doomed to live a life plagued by melancholy and worry. It merely means that we are more susceptible to another complication--one that we need to start talking about. We need to start talking about it because once it is out in the open, once we deal with it, we can not only live with it but thrive. I read a snippet the other day from someone stating that depending on the way you look at it, mental illness can be seen not as a demon, but as a superpower. We can use it to our advantage. It makes us more resilient. More empathic.

But that's only if we don't ignore it.