Wednesday, November 12, 2008

Transitioning from Health to Type 1 Diabetes: When Your Child is Diagnosed

April 6, 2003 is a day that I will remember, in minute detail, for the rest of my life. That was the day that I transitioned from being the mother of two beautiful, healthy girls to being the mother of two beautiful girls-one healthy and one with type 1 diabetes. There is no way to be prepared for a day like that; having said that, there is also no way to avoid dealing with it. Many transitions occur for parents during the life of their child or children; having a child go from being one with perfect health to one with a chronic illness is among the hardest transitions that some families have to face.

This particular transition has so many branches that we will call it the ‘diabetes transition tree’ for this writing. A large branch of this tree is the fact that little has been done in the way of studying the effects this diagnosis has on a family. According to a study published in the Journal of Advanced Nursing, “Little is known about the experience of parents of newly diagnosed children as they cope with and adapt to their new situation” (Lowes, Gregory & Lyne, p. 253). In this study, 38 parents were interviewed about their experiences dealing with their child’s diagnosis. The conclusion of the study was very informative and may be a good starting point transitioning parents into what amounts to a new direction in their lives: Before diagnosis, most parents associated their child’s symptoms with normal childhood illnesses. The unexpectedness and speed of the diagnosis left all parents ill-prepared to deal with the situation. Their world suddenly changed, leaving them insecure and uncertain about the future. Diabetes intruded emotionally and practically upon all of their lives. Parents successfully adjusted and adapted their lives and rebuilt a new model of the world to accommodate their child’s diabetes (Lowes, L., Gregory, J., & Lyne, P. [2005] p. 253).

The same study discusses Parkes Theory of Psychosocial Transition. To summarize this theory, it is the assumption that a loss, of any kind, causes individuals to be forced to change their view of what the world was supposed to be, versus what the world has turned out to be. “A familiar world suddenly becomes unfamiliar, causing feelings of anxiety and fear that cloud judgement and impair concentration and memory” (Lowes, Gregory & Lynne (2005), p. 254), this is a powerful and accurate description of what is usually a sudden and unexpected diagnosis. In my personal experience I have found Parkes Theory to be accurate; however, it does not account for one factor that contributes to the grief associated with a diagnosis and that is something I call the ‘It Could Be Worse Syndrome’. This syndrome is actually perpetrated by well meaning strangers who like to say to parents “well at least it is only diabetes, it could be worse”. What that does is make the parents feel guilty for being devastated over their child’s condition. It compounds and complicates already volatile emotions; which makes the transition even harder. Most parents are aware, within days of their child’s diagnosis, that diabetes is a life threatening disease. This is something that many non-diabetic people are not aware of; in fact, “38% of Americans wrongly believe that insulin treatment either renders diabetes harmless, cures it, or they don't know the effect of insulin” (Health Care Strategic Management, (1999), p. 8).

Another branch of this complicated transition tree is food. Most families have to completely relearn what they thought they knew about carbohydrates and food in general. Diabetes has a way of making food and eating a chore. According to the Juvenile Diabetes Research Foundation, “Once they've accepted the fact their child needs daily shots or pumped insulin, food becomes the major focus and often the cause of considerable stress for many parents of children newly diagnosed with type 1 diabetes” (2006). Suddenly, a large portion of the day is spent thinking about food: how many carbs are in that; are they fast acting carbs or complex carbs; will that piece of candy cause a delayed high blood sugar; and on and on the questions go. There is no break from thinking about food, it is one of the most important parts of daily life; it is permanent and it is exhausting.

Another large part of this transition has to do with the emotions and life changes for other children in the family; the ones who are still healthy. A diagnosis of this magnitude tends to absorb the parents completely; where does that leave the siblings of the diabetic? A study done in 2001 by PhD and Licensed Social Worker, Colin Hollidge, showed that a well child, who has a diabetic sibling, had emotions that rivaled the mother’s in intensity. Well siblings, in Holidge’s study, had to deal with intense feelings of anxiety, guilt, jealousy, shame, worry and survivor guilt; that is a lot of weight to carry on young shoulders. My oldest daughter has shared stories with me about those early days in her sister’s diagnosis. I thought the best thing for her was for her was to go on to school, so things could at least be normal for one of my children. That is not how she perceived it. She felt pushed away, completely out of control and out of her very young nine year old mind with worry. She believed that her sister was going to die and she would not get a chance to say goodbye. In the years since, she has shared her feelings of shame for being jealous that her sister gets so much attention; and her feelings of jealousy that I love her sister more because she has diabetes. Her feelings are strong and very real. Ironically, my diabetic child has suffered the exact same feelings for the exact same reasons, only they are a mirror image. She has felt like I loved my non-diabetic daughter more because she does not have diabetes; she has felt shame that she wishes she was not the only one in our home with the disease; she has felt jealousy that her sister can run out the door without having to remember a bag of supplies that may save her life-or end it if they are forgotten. Like her sister, her feelings are strong and very real. Unless, a cure is found for diabetes they are most likely going to have live with these emotions on different levels, at different times, for the rest of their lives.

Perhaps the biggest branch of this transition is learning how to live with all the changes. There was a study done in 2000 showing children who had some form of coping skills training, were more likely to have better control of their diabetes and felt fewer emotional problems related to having a chronic illness (Faulkner, 2003). This indicates that parents, who were proactive in addressing diverse issues associated with their child having type 1 diabetes, clearly had a positive affect on their child’s overall emotional well being. A study conducted by Kathleen Hanna, PhD and Diana Guthrie, PhD, listed several areas that parents considered helpful in dealing with their child’s diabetes; they are directive guidance which provides practical support; non-directive support which include counseling behaviors such as listening and unconditional support; positive social interaction which includes participating in social engagements for fun or relaxation; and tangible assistance such as sharing many of the numerous tasks involved in caring for a child with diabetes (2003, pg. 216). The common thread in both of these studies appears to be communication; whether that communication is from patient to doctor, parent to parent, or parent to child.

When contemplating ways of dealing with this disease, well siblings must be part of that plan. Hollidge (2001) suggests several steps parents can take to help their well children adjust; including “physcoeducational groups designed to help parents understand the stressors of the well sibling” (pg. 24). Hollidge believes that when parents come to terms with their own emotions about their ill child they will be better prepared to understand and accommodate the emotions of their well children. Likewise, she feels that entering well children in a group program, specifically designed for siblings of diabetic children, will help them with the myriad of emotions that come with having a chronic illness living in the middle of the family through the person of their brother or sister.

It is clear that of all the transitions families go through, the ones dealing with the life-or possible death-of a child are the hardest to handle. There are many facets to accepting that your child is no longer healthy; that he or she will no longer have a carefree childhood that should be the right of every child. Learning to accept the disease, educating yourself about the disease, facing your own emotions, and facing the emotions of your well children are all branches of this enormous tree; they all have to be dealt with. Whether you are the parent of a chronically ill child or a professional helping a family through this difficult transition, the most powerful weapon, and sometimes the only weapon, you will have at your disposal is knowledge; the key to mastering that weapon is learning how to use it.


Jill said...

Well said!

We're still feeling the very raw emotions of acceptance and frustration.

Anonymous said...

This is just exactly what I went through and am still going through following the diagnosis of my son at aged 8 years old, 2 1/2 years ago. I can relate to all of these feelings and emotions. I also know exactly how it feels when people tell you that you should be glad because your child hasn't got some other horrible disease... but my child has a horrible disease called type 1 diabetes and we have to live with that awful reality...

The Turner's said...

Thanks for the responses, it truly helps when you know there are other families out there feeling the exact same things - it makes you feel a little less alone (and a little less crazy).

Lynnea said...

I believe this is one area...the emotional/psychological side of diabetes....that has been completely neglected. There should be more support and information for the newly diagnosed especially.

The Turner's said...

I agree with you all. It drives me crazy when people say "oh, I didn't think diabetes was THAT BAD anymore".