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Dealing with Diabetes and Other Chronic Illnesses

By Bari Ross, LPC, M.Ed

Presented on 8/22/09 to parents

Reactions to learning of one's chronic illness will be varied, but they are always powerful. Emotions may range from shock to relief and everything in between. When a family hears one of their children has diabetes, stress permeates even the most loving household. The general nature of each of the parents and their varied personal experiences will usually determine how they'll deal with the trauma, but regardless there is always a certain level of anxiety. The diagnosis changes life as you knew it, even if the extent of the illness is still undetermined.

We usually think of grief in connection with a death, but a diagnosis of diabetes can feel like a loss to both parents and children. it's the loss of their previous way of life, which seems so care-free in comparison, the loss of spontaneity, the loss of your parental goal: that you can protect your child from all harm. Even when you come to acceptance of the fate of this diagnosis, there is still a huge sense of loss -- loss of what was, your dream of healthy children and a "normal" (whatever that is) family life. And the healthy siblings grieve too, and experience the guilt of being healthy. Siblings often secretly wonder "why didn't this happen to me," or "when will it?" The children in the house frequently determine the family's emotions, but as children, they aren't sure what to do with these emotions. The siblings know that you as parents will need to help their sibling with diabetes (or any chronic illness), so they might temper their emotions. It is helpful to give yourself and the rest of the family the time and freedom to grieve the losses they're most likely feeling. And even when you think you've got it handled, the grieving completed, something might come up to retrigger the grief emotion, almost like a big wave that knocks you temporarily down.

As I talk about each of these feelings, I want to reinforce that these are common feelings to experience. It is helpful to know you are not alone. These feelings are normal and may continue to exist throughout child rearing and even beyond. It is part of the package of having a child with a chronic illness.

People's initial shock puts them in a state of denial, challenged to accept the diagnosis right away. You might need time to gather your strength to confront this challenge you are facing, yet with diabetes there is no waiting period; care needs to start immediately. Changes in eating (counting carbs), administering insulin, and checking blood sugars -- none of that can wait.

Confusion often follows as you struggle to make these changes. It's hard to retain all the information you are receiving. Diabetes comes with a lot of instructions!

Even as you become less confused while learning about diabetes, fear will come and go throughout your life, mixed with anxious worry. It is frightening to know your child has a life-long disease that requires constant care. It is frightening to think about what might happen, even with the best care.

Anger is an emotion that comes with loss — anger over what was, anger over what is. Anger at the unfairness of having a chronic disease. You will need to decide if this anger is helping you or hurting you, and that way you'll be able to make decisions on how to handle the anger. Sometimes anger helps fuel action, and that can be helpful. But anger can also be destructive, and that can be dangerous. Exercise is helpful. So is having a support system. Diabetes is hard to take on by yourself; it is easier if both parents can be involved.

Many parents cry themselves to sleep in the beginning. As you share your feelings with others, some of the grief gets easier.

Guilt is another common emotion families feel. Parents feel guilty even though they know cognitively it was not their fault. Siblings feel guilty that their brother or sister got the disease instead of them. The uncertainty of when sugars will fluctuate makes the question of how to live a normal life challenging.

Sometimes it is the reaction of other people that can be a challenge. Perhaps in the past others would frequently invite your child to play, but they worry now that something might happen, so the invitations may stop. Other times the community gets behind you and is there to help in any way they can. Accept people's help; it is their way of showing you that they care.

Most parents are able to send their child to school for the day without much thought of connecting with them until the school day is over. As you have surely learned, when your child has diabetes, you are in constant contact with the school; finding out what your child's BG is, and making sure they have the right food. Your thoughts and actions need to continually connect with the child who has diabetes, making sure the teacher understands, the playground assistants, etc.

Many people reading this today have a child with a newly diagnosed case of diabetes, and it probably seems very overwhelming learning to manage your child's diabetes. Understand that this will take time, but soon you'll totally understand the nuances of this disease and how to best treat your child when they are high, when they are low, when you are at a restaurant or a big picnic. Don't get hard on yourself; you are just learning and there is so much to learn.

At the same time as you are trying to learn all you can, so is your child. It's important for your child to get educated about diabetes along with you. They might feel that diabetes is their fault. They will experience a similar range of emotions, along with a feeling that they have no control. With older children, they want to be independent, and letting them be in control is a good way to see if they can handle it. But no matter how independent your child is with diabetes management, you still should be involved.

Here are some strategies that might help you cope:

Coping Strategies

Most of what you learn is about when your child is diagnosed with diabetes is management of symptoms, not how to handle the emotions you and your family are feeling. I reviewed the numerous books I have about juvenile diabetes to prepare for today (and I've collected quite a few books already) and they all talk about how to manage the diabetes, but not how to deal with your challenging emotions. My guess is that is why you came to this section, so you could get some tips.

When your child has health issues, you want to be there -- want to be loving, supportive, understanding, etc. At the same time, you might be feeling overwhelmed! Having a night twice a month where you and your partner can go out without the kids would be helpful, even if they need to contact you during dinner to share their BG! There is an awful statistic about how many marriages fall apart when there is a child with special needs to consider. One way to keep your marriage healthy is to have time for one another, time away from parenting. Perhaps a grandparent or aunt or uncle live near by and can watch the kids, or perhaps a trusted babysitter. If you and your partner can be a support for one another, the marriage and the family will benefit.

Many parents put all of their time and energy into taking care of their child, ignoring their own needs, and doing everything in their power to make sure the diabetic child is happy, feeling that consideration for themselves would just be selfish. This can also cause other children in the family to act out in an attempt to gain some of the attention that is now being focused on their sick sibling. Emotional support is often needed. According to Errol Nadler, a therapist who specializes in families affected by chronic illness, when parents don't take care of themselves, it is reflected in the behaviors and attitudes of the entire family, but when the parents are happy and flourishing, the entire family is happier, including the child with diabetes. So give yourself permission to take care of yourself too!

Various Ways to Take Control

You release control of certain parts of your life, but it is possible to find new ways to regain a feeling of control.

If this article was helpful to you, please send me an email at bari@dakotacom.net and let me know. Thank you!