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Being a parent is emotionally and mentally draining at times. Factor in a chronic illness, like Type 1 diabetes, and you have your hands full. Not just some of the time, but all the time. Dealing with a chronic illness during those impressionable years can present challenges for your and for your child.
When my son was diagnosed, I had so many emotions and thoughts running through my head. You internalize a lot of things ask yourself, “Is this my fault? Did he get this from me?”
My son had a great endocrinologist that spent time explaining to us that while Type 1 diabetes can be genetic or it can also be caused by a viral infection. Sometimes logical explanations don’t ease the guilt a parent can feel when their child is diagnosed with an auto-immune disorder. In the first few years after my son’s diagnosis I’d ask myself occasionally if my son is being punished for something I had done in life? Did I somehow cause this? The answer is no and I know that, but I think it’s natural for someone to try to find understanding in a random occurrence.
The first few years after my son’s diagnosis was physically hard for my husband. The fear of hypoglycemia, or low blood sugars, in the middle of the night kept him from getting more than 3-4 hours of rest. He would stay awake long into the night to take blood sugar readings for his own reassurance that he was doing whatever he could to track trends. He wasn’t fully trusting of providing my son’s endocrinologist a three-month snapshot of numbers and them understanding what was happening to his son day after day. Once my son was put on an insulin pump and we got approval for a continuous glucose monitor my husband got more restful sleep, but he still monitored and trended blood sugar readings himself.
When your child receives their Type 1 diabetes diagnosis the doctors will talk to you about times of sadness and even depression, especially as a teenager. You start to tackle the daily life changes and you tuck that away at the back of your mind. When it starts to happen and you’re in the moment you can’t prevent it. No matter how hard you try your child will have feelings of sadness. Your child will have amplified feelings of not belonging. When they have an illness or condition it is something that always makes them different and they hate it. Many times over the years my son has ended what I thought was a typical teenager argument with, “I just want to be like everyone else and do what they do without having to stop and check my blood sugars!” Dealing with these feelings makes them question themselves and their faith.
While my son was in elementary school he didn’t run into situations that made his diagnosis prominent in his life. It wasn’t until he was in high school that he had to deal with situations that made him uncomfortable, sad and downright mad about his diabetes. As I’ve mentioned before my son was an athlete in school and always had teammates by his side. He has always been a fun-loving kid who can make anyone feel at ease. He could always make friends easily.
During basketball season of his freshman year, it was brought to my attention that some of the seniors on the basketball team referred to my son as “diabetes boy” instead of his name. My son had not mentioned it to us because he didn’t want to make a big deal of it or make himself stand out any more than he already did. When we talked to him about it he specifically didn’t want to do anything to get anyone in trouble. Fortunately, he had a wonderful coach that my husband felt comfortable enough to address it with and it was handled in a manner that didn’t bring attention to my son, but the actions of those few boys.
Autumn is all about football and with football comes homecoming – parades, pep rallies, dances. Our rural school has a co-operation agreement with a neighboring town to combine to form our football team. As the homecoming week wound down his sophomore year, the majority of the student body of our neighboring town gathered for the pep rally with a handful of students from my son’s school. The seniors took the stage to pump up the crowd for the game that evening. One senior boys from my son’s school mentioned that he was the only player from his school that was in attendance. Some of the other seniors on the team corrected him and let him know that my son was also there, to which he replied over the mic, “Oh, he doesn’t count because he has diabetes.” I was not in attendance that day but was told that the gymnasium went quiet and all eyes turned to my son. I can’t imagine the flood of emotion my son had when the one thing he had no control over was pointed out and highlighted his differences from everyone else in the gym. This was another instance that my son didn’t share with his father or me. He bottled it up and I found out from another parent.
Through the years, my husband and I have tried to be very honest and open with my son to help foster a relationship where he feels comfortable sharing thoughts and feelings with us. My son’s doctors were right; the teen years are the hardest. My son has visited a counselor in the past, but he didn’t feel that it was the right environment for him to share his feelings about his diagnosis and how it affects his life. As a family, we continue to be open about how it affects him and his life as he transitions from high school to college.
My son also finds comfort in the friends he’s made at a yearly American Diabetes Association summer diabetes camp. Next time I’ll talk about camp and what he’s gained from being around kids who go through the same things that he does.
Has your child struggled to fit it while managing a chronic illness? Share your story in the comments.
Presented by: Tamara Martin
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