Experience Journal: Coping with diabetes

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Diabetes is a chronic illness that affects over 200,000 children and adolescents in the Unites States. Living with diabetes requires dietary and lifestyle changes that can be challenging for children of all ages. For instance, monitoring blood sugar levels and administering insulin become routine parts of daily life.

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If you or your child has recently been diagnosed with diabetes, you might feel anxious or overwhelmed. Don’t worry: Millions of people have been through the same experience. Hearing from others who are effectively managing their condition and enjoying a healthy lifestyle can go a long way toward easing your anxieties.

Experience Journal, a project of the Boston Children’s Hospital psychiatry program, is a series of stories, videos, and personal experiences that represent the collective wisdom of children, young adults and families living with chronic conditions.

This Experience Journal excerpt features interviews with children and young adults about growing  up with Type 1 and Type 2 diabetes. 

How it feels to be diagnosed

Alisha, 20

When I first got diagnosed, I panicked. I was hyperventilating and everything and it got so bad like I went into an asthma attack right there. I panicked right when I heard “diabetes” because my mom and dad have it and I saw how they struggle with it and I started panicking. I think I didn’t want to hear the doctors or anything so I just think it was hard to listen. When I started listening to them, it seemed easier.

Sarah, 23

It was more frustrating than anything else. I was 16 ½ and had just got my license that very day. I was a young adult in a part of the hospital that usually only deals with young children. The doctors and nurses did not know how to communicate with me on my own level, and my anger and fear at being diagnosed with this disease was compounded with anger that I was being treated so poorly. Medically, the staff was fantastic, but they all either treated me like a small child, or tried too hard to treat me like an adult and failed miserably at it. Too often they spoke to my parents and not to me, though I was right there.

 

Managing blood sugar and medications

Allie, 9

What you do is you test your blood with a meter and you stick a little tiny needle into your finger and then blood comes out. Then you put it on a little strip and the meter tells what your number is. Then you take your pump and you type in the number and how many carbs you ate, like 26 for a cup of hot chocolate. The pump gives you a number, like maybe like 1.5 or something, and then you press a button on the pump and then the insulin goes in to your set so your blood sugar won’t be high.

Sarah, 23

The biggest and most obvious change is the fact that I have to test my blood sugar and take injections 3-4 times a day, and I was also put on several oral medications. This has affected some changes in my routine. Other changes involved activities that I had not even begun yet. For instance, I do not know how much alcohol I would have drank in college had I not had diabetes, but I never let myself get very drunk because I need to remain alert enough to take care of my medical routines.

I always do my treatments on my own. I am not comfortable with others being too close when I do them. It is not embarrassment; it is simply a matter of independence.

 

The challenges of diabetes

Sarah, 23

Other than the hardship of having to take medication and all, the hardest thing for me is the knowledge that this is permanent. It would be much easier to deal with injections and other problems if there were an end in sight. Knowing that things will likely be this way all of my life is frustrating in the extreme.

Julie, 14

I can’t eat as much sweets as normal kids. I can eat them, but I just can’t eat as much. It gets really annoying when like teachers at school are passing out candy and they say, “Oh yeah, you can’t have this. You can have a pencil instead.” It’s like, well, I can have it. I just can’t have as much. It also gets really annoying needing to explain it five million times to every single teacher.

Allie, 9

You can eat like a chocolate bar like once in a while or like hot chocolate or something like that–at long as you cover it with insulin.

 

Building confidence and hitting your stride

Sarah, 23

In some ways, I think having diabetes has given me better perspective about some things. I know for sure that having this condition has shown me things about myself and what I am capable of dealing with that I had no idea existed.

Andre, 18

I used to not really care about diabetes, but now that I’m growing up, I’m taking care of myself. I try to keep my blood sugar under control because when I was little my blood sugar used to be like 400 or 600 and right now I’ve got my blood sugar under control so it’s in the 100 range or lower. It’s at the point where the doctors are rewarding me. They gave me new monitors and stuff.

Mary, 25

Sometimes my diabetes gets in the way of chocolate cake, which can be upsetting. Aside from that, I have never had an experience where I’ve been kept from doing anything I wanted to including going back to school for a graduate degree and traveling the world! I think the hardest part for any diabetic is the first few years. Once you are diagnosed it becomes really important to pay attention to everything your body tells you. At first it is such a new thing that I found great difficulty in interpreting what my body tells me. After fifteen years, it’s second nature to me.

Learn more about living with diabetes and other chronic conditions from Experience Journal.