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Feelings And Diabetes

Published:
19-April-2005

By H.Peter Chase, M.D.
Barbara Davis Center for Childhood Diabetes
Department of Pediatrics

The emotions that one deals with at the diagnosis of diabetes are common with the onset of any serious medical condition. They are present in some form in all families who have a family member with diabetes. If families do not deal with the way they feel at the time of diagnosis, the feelings may linger and cause problems for many years. Dealing with the feelings openly at the time of diagnosis will help with long term adjustment.

Confusion, or Shock are common feelings for families. Some families feel like giving up when diabetes is diagnosed. They feel there is no hope and that this is the end of everything. The person that they thought was "perfect" will now be "different". The person will never be the same. This kind of sadness is similar to the process of mourning. The family mourns the loss of the person's health. These feelings are very natural. Diabetes may be the worst thing that has happened to the family. If the family learns as much as possible about the cause and management of diabetes, and talks together about their feelings, everyone will do much better.

Because of the shock, it is often hard for families to think about what the medical team is saying in regards to diabetes. Sometimes they will ask to have things repeated. The medical team understands what the family is going through and is happy to go over the information several times. Because of the shock, and often lack of sleep, many clinics teach only survival skills in the first day or two. They can go into more depth at the one-week visit.

Denial is often expressed in comments such as, "This can't be happening to us" or "This can't be happening to my child; there must be a mistake in the diagnosis." As a result a family may want to seek second opinions from other doctors, hoping to be told that their family member doesn't have diabetes. This denial may make the person's and the family's struggle to adjust to the diagnosis that much longer and more difficult. It may even interfere with medical treatment and education. Some family members may want to deny that they have any feelings at all about the diagnosis. Family members may not want to talk about the diabetes. If this happens, the person with diabetes may feel alone and the family members may not be able to help each other through a very stressful time. Sometimes people may try to hide their feelings to be "strong" for a newly diagnosed person. Doing this may cause the person to feel that others don't care. IT IS IMPORTANT FOR CLOSE FRIENDS AND FAMILY TO SHARE THEIR FEELINGS ABOUT THE DIABETES.

Sadness is a feeling that can be felt by any family member. Any member may cry, feel depressed, or feel hopeless. One teenager, shortly after she was diagnosed as having diabetes, began to cry each time she talked about living with diabetes and giving daily shots "for the rest of my life". A mother did well for three months after she learned her child had diabetes. She helped manage the diabetes and also cared for her other children. After three months, she began to cry often and had trouble caring for her family. It was important for this mother to share her feelings and to talk about her sadness. When she did she began to feel better. A father expressed much sadness when his son was diagnosed with diabetes. Several days later, after discussing diabetes and exercise, he felt much better as he realized his son would still be able to participate in sports activities. Feeling sad is normal and brief periods of sadness can reoccur over the years.

Anger is a feeling many families have. They may vent the anger towards doctors, nurses, God, a husband or wife, the person who has diabetes, other family members, or even themselves. The person with diabetes often feels, "Why me? Why did I have to get diabetes? Did I do something wrong?" He or she may feel anger toward other healthy family members, or toward others for no apparent good reason. The anger may be expressed or it may be buried. Such anger, although it seems to have no good reason, is a very normal feeling. It is important to find positive ways to let it out. This may be through talking with others or through sports or other activities. If it lasts for a long time, the person and family may have a hard time managing the diabetes. When these feelings are too strong, or last a long time, family or individual counseling may be helpful.

Fear may be felt by all the family members. The parents or spouse may fear the extra responsibilities and expenses associated with diabetes. Parents may also fear not being able to manage the diabetes and doubt their abilities. Brothers and sisters may fear they might have or might get diabetes. The person with diabetes may fear such things as injections, hospitalizations, or death. He/she may fear being different from friends and family. Many of the fears may not be realistic. The family members should talk about their fears, both with each other and the diabetes care team. Then they can learn which fears are not realistic. If fears and concerns are shared with other people, then they don't get "bottled-up" inside. This makes them easier to manage.

Guilt is a feeling common to many family members. Parents often feel they "gave" their child diabetes. This idea occurs even though parents have been told that auto-immunity (self-allergy), viral infections, and other unknown factors are important in causing diabetes. We do not completely understand why someone develops diabetes. There is no proven way at this time to prevent it. Earlier diagnosis after the beginning of symptoms would not have prevented the diabetes from developing or changed the way diabetes is treated. One mother felt that because there was diabetes in her family, and not in her husband's, that he must be blaming her for their child's diabetes. After months of worry and concern, she finally shared her feelings with her husband. He had not felt that way at all. Some young children feel that their diabetes is a punishment for bad behavior. Some family members may feel that "eating too much sugar" caused the child's diabetes. It didn't! These ideas can cause unnecessary guilt for everyone.

Adaptation or adjustment to the diagnosis of diabetes takes a long time. Often one parent will have stronger feelings than the other parent. It helps to talk and share feelings within the family and with members of the diabetes team. As the child and family live with diabetes, they become more used to it. They will feel more sure they can manage it. Fears that have no reason will go away. Sadness and anger may still come and go at times. The parent may feel sadness when a child is hospitalized or when he or she sees pictures of the child before the diagnosis. Sometimes a parent may feel very sad for a moment, such as when kissing the child at bedtime. These feelings decrease with time. The continued love for the family member is the most important feeling and does not change.

As the family adjusts, the members begin to feel more hopeful. They may want to help in diabetes research studies or help diabetes support groups raise money. It is important not to look at diabetes as the end of the world. If all family members have a positive attitude, life with diabetes will be much easier. Fitting diabetes care into as normal a lifestyle as possible is a major goal.

By H. Peter Chase, MD
Barbara Davis Center for Childhood Diabetes