I grew up with a large family. I have a brother and sister from my parents, a brother from my mother, and two sisters plus a brother from my step-mother. There were a lot of children in both of our houses.
When I was diagnosed 15 years ago with type 1, it sent my whole family into a tailspin. No one was expecting it, no one knew what to do or how to handle the disease. Even how to talk with me about it was difficult because I didn’t know how to express what I needed for support at such a young age. We were all confused, afraid, and grasping for support from anywhere we could find it.
I found strength in researching and trying things on my own. I didn’t want to worry my parents and kept them at arm’s length while I learned, not realizing that they would worry regardless. Pushing them away, I now know, probably made them more apprehensive because they didn’t understand the disease. How could they stop worrying unless they were involved and could clearly see that I was going to be okay?
They had to let me mature and take responsibility for myself much sooner than any parent should be forced to. Growing up with a chronic disease left much room for error and none of us knew when things would turn out badly or when I would end up in the emergency room. In addition to the typical social stresses of growing up, the thought that I could die without the necessary tools was laid overtop.
My brothers and sisters were, in a way, pushed to the outskirts of my parents’ thoughts because bearing the responsibility and caring for a troubled child was soaking up much of their energies. Not unlike having a drug-addicted family member, the worry overtakes much of their mental energy on a daily basis for that child, and the “normal” kids are often left out. Maybe it’s because the kids who aren’t in immediate danger are thought of as “okay” and many parents will focus solely on the ones who need them the most. The issue is, however, that all children need their parents and the amount of need is only in each person’s perspective.
My siblings may not have been in immediate danger on a daily basis, but they did have emotional needs for support while growing up. The fallout of such focused attention on me lasted much of these past 15 years. I haven’t gotten to the heart of every brother and sister’s feelings, but I’ve spoken in depth with one of them recently. She expressed that she felt abandoned throughout her teenaged years when she needed emotional support from my parents because I was soaking up much of their thoughts. She became resentful toward me, despite knowing the loss of my parents’ attention wasn’t my goal. We had distanced ourselves from each other all these years, not being able to pinpoint exactly what the issue was.
I may have felt abandoned by my health, by my siblings, by my friends. But, my siblings may have felt abandoned by my parents and left floundering for answers on how to support their sick sister. There is no “which is worse” question because everyone’s struggles are unique to that person. As adults, we understand why things happened the way that they did. But, sometimes understanding still does not soften the edges of the emotions tied into it all.
I made many mistakes with my health while I was trying to gain control. Even though they are fewer and farther between, I still make mistakes today. So, even though I ask them not to worry, it is understandable why they do anyway. Now that I’m much older, more responsible and experienced, I cannot fathom how scary it is for them even to this day. Having children of my own, I cannot imagine the emotional struggles my own parents face each day, especially when I struggle with my health. Most things seem surmountable when compared to losing a child.
I do not have any answers on how to handle this situation directly. I do not have the experience from the parent perspective to be able to advise on this issue. I do, however, have the past years with my family background which was very difficult to understand and cope with, and the future of our relationships still strained and trying to be sort out.
Diabetes is a family disease. It is an emotional tornado that consumes every member. Since it is not an illness that can be “dealt with” and is only something that can be learned and managed on a daily basis, everybody in the family gets a form of diabetes with just one diagnosis. A chronic disease is hard on everyone. My only advice is to be aware.