August’s DSMA Blog Carnival topic asks: What can a parent of a child with diabetes, or a person with diabetes, do to help reduce the emotional impact of caring for diabetes?
Good question. I fit into both of these categories (SO lucky!) and I think I’m still trying to figure out the answer for both situations.
It has been covered before, but the emotional/psychosocial aspects of T1 diabetes is undertreated, underrecognized, and underestimated — even by those of us dealing with it in ourselves or someone we love. Part of that is the sheer time that the details of the physical/medical side already take, and it is those details that present a potential for immediate danger so anything else has to take a backseat. But, then when you see how much impact the psychosocial/emotional can have on bg numbers and general wellbeing, you realize that you have to also carve out some time and attention for the softer bits.
I have seen a counselor who specializes in chronic illness and T1 specifically (VERY helpful), and I have celebrated my diaversary each year as a day to reflect on my hard work and successes in caring for myself. I first started seeing my counselor about 6 months after my diagnosis when I was having a recurring dream. In my dream, I had T1 but the dream was about receiving a terminal cancer diagnosis. The overwhelming emotion/feeling in the dream was relief — thank goodness I won’t have to live a long life with T1. Definitely a wake-up call that I wasn’t handling my T1 diagnosis as well as I thought I was with all of my detailed logbooks and rigid eating plan. My A1c was great but my inner landscape was a wasteland. The other thing that helps the most for my own emotional state is to remember to let the BHE actually help from time to time. My inclination is to “do it myself” (cue that inner 2-year-old – or if you haven’t seen the “worry ’bout yo’self” video on youtube go watch it right now. Really, right now.) so even when he offers to test our daughter or do her site change so I don’t have to, I say “no, I’ve got it” before I even think. I have to remember that he would rather that we sit and eat together instead of me waiting until after both bg tests are done and carbs for both of us counted and pre-bolus for her and bolus for me are done… Usually at that point he is finished eating. So, take help when it is offered and it makes sense — whether that is someone else going and getting you some glucose tablets when you’re low or even carrying your supplies when you are all out on a hike. Literally or figuratively let someone else carry part of things for a while.
I think a lot about how to help my daughter with the emotional impact of her own and her mother’s diabetes. I don’t want her to be made afraid by my diabetes or to be affected by whatever stress I feel over my own self-care. At the same time, I worry about how she feels about herself and her own diabetes — does she feel different from friends? does she feel afraid? does she worry? The bear is only 5, and she doesn’t seem to feel afraid or worried about her diabetes yet. She is just becoming aware of the site change schedule and actually helping to remember when we need to do it, and sometimes she stops to think about how we will handle her pump, etc. if we are at the beach or something like that, but neither has manifested as worry yet. Up to this point all of her friends have been kids she has known since before her diagnosis and we haven’t experienced any weirdness around her pump or testing at preschool. But, she starts public kindergarten next week and the social dynamics are definitely on my radar. I have some excellent resources (Kids First, Diabetes Second; Little Girls Can Be Mean) and very supportive and knowledgeable staff at the school and in her classroom so we are probably in as good a situation as possible. Up until this point, I have just mainly tried to shield her from the negative emotions that I sometimes feel — at least in the intensity of them. Sometimes if she says she doesn’t want to test or if she’s upset that the first test strip didn’t get enough blood I talk about when I get frustrated with those same kinds of things myself, but she doesn’t see my tears when I’ve really had too much. And, of course, we deal with pretty much all of the physical/medical details for her so she isn’t overwhelmed by that at this point. I will definitely be looking to the DOC for models as she gets older, to try to gauge when she is ready to take on different parts of her own care and support her as she becomes more independent. But, also balancing out that she needs to become independent with her care – so that she can feel capable and strong and know that she has everything she needs to be healthy and do anything she wants to do in life.
Lastly, I’m trying to build social networks for both of us so that we don’t have to be alone with anything we are dealing with. We are meeting a new babysitter soon who has T1 and was a counselor at a diabetes camp for a few years, I am addicted to the DOC, and I definitely want her to go to diabetes camp. I’m not sure there’s anything as helpful as talking to someone who really “gets” what you’re dealing with.
This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/08/august-dsma-blog-carnival-3/