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In caring for diabetes, the important role of emotions is often overlooked. It's so much easier to deal with a patient's physiology than to deal with the patient's feelings.
Dr. Barbara Anderson is a psychologist at the Joslin Diabetes Center in Boston, and Chairman of the American Diabetes Association Council on Behavioral Medicine and Psychology. She is devoted to helping her patients integrate the demands of diabetes into their daily lives with a minimum of stress.
I met with Dr. Anderson at the ADA's Scientific Sessions and asked her how she helps her patients deal with the psychological obstacles of diabetes.
Hoover: How do you explain the impact diabetes has on patients' feelings and those of their families?
Anderson: We're talking about the emotional side of diabetes, the whole spectrum of feelings and beliefs people experience from the time of diagnosis onward. They feel overwhelmed by the tremendous expectations. They are told that they are responsible for carrying out a very complex regimen and they feel they must do it perfectly, for their future lies in the execution of this regimen.
This message is presented to patients as if there were no problems involved. Burden is not a word that a physician or nurse would likely use. They use terms like "regimen", and "four times a day," and "extra shot." Far too often, people with diabetes are made to feel, "This is so simple and easy, there must be something wrong with me if I can't do it perfectly."
Hoover: And there's never a day off.
Anderson: There is never a day off and there is never a day like any other day. You can do the same thing today that you did yesterday and not get the same blood sugar results. It's so complex in terms of time, in terms of what you do. I've been doing this work for 20 years, and one of the biggest mistakes I've seen health care providers make is selling the tools that take care of diabetes as if they're perfect. They're not perfect. There's oversimplification of all the difficulties.
Hoover: People who don't have diabetes aren't given a laundry list of bad things to anticipate over the next 20 or 30 years. Don't you imagine the stress of anticipation can be emotionally burdensome too?
Anderson: Yes it is, and it takes people out of the normal context of living. Pregnancy is a good example. I continue to be amazed by the number of young women with diabetes who have worked so hard to get their glycohemoglobin to an acceptable, safe range where it is now OK to get pregnant. No one has ever emphasized to young women with chronic diseases that 20% of ALL first pregnancies end up in spontaneous miscarriages. We don't have complete control over pregnancy. These young women with diabetes are devastated when they have a miscarriage. They feel like it's all their fault.
Isolation is the Enemy
Hoover: I'd like to hear more about the loneliness that you say each individual feels in dealing with diabetes.
Anderson: I do feel that the number one enemy for everyone with diabetes is isolation. I think groups are a very powerful treatment tool for approaching and beginning to help people heal from some of the ravages of isolation. I think much of what gets labeled as denial and anger has to do with people being so lonely and in so much pain for so long all by themselves. Everybody struggles. Nobody does this perfectly. You bring people together and healing starts just by listening.
Hoover: How would you suggest that people find help with the emotional problems caused by their diabetes? How can they determine the need for this sort of help in the first place?
Anderson: First of all, I believe that everyone at the diagnosis of diabetes should be issued a support person. It wouldn't necessarily be a psychologist, but it needs to be acknowledged from Day One that with the behavioral impact and emotional changes that diabetes demands, you're going to need help and support. I'm talking about an ideal world.
I think that anybody who is feeling discouraged about himself as a person with diabetes feels frightened, scared, lonely, unclear, confused, fuzzy, or just filled with anger because nobody understands-that should be the signal to seek out help. I don't think all help has to be professional, but I think the best place to start is with your doctor. Many physicians value the input of psychologists and social workers, and can put patients in front of someone who really will "get it."
Hoover: I think it is important to mention that not all psychologists, psychiatrists and other counselors automatically understand diabetes issues, and that it's important to find one among those who do.
Anderson: What you are saying is absolutely right. Call the ADA, call the JDF [Juvenile Diabetes Foundation], or speak with your doctor about finding a professional who is knowledgeable about diabetes, and take it from there. If you don't like that person, my rule of thumb is: three strikes. If you go three times and you don't feel like you're beginning to set down some of the burden, then move on.
Most people are doing so much better than they think. Most people are doing really wonderfully in so many areas, yet they feel crummy about themselves.
Expect the Unexpected
Hoover: I'd like to you to talk about the fact that diabetes is for life, and that over the course of your life, not only will your diabetes change, but you will change. There will be times when you are doing fine and other times when there is a crisis: a divorce, a complication, an illness, or even something happy like a wedding or baby. A time when your diabetes is especially difficult to manage and you feel you need some special help in coping.
Anderson: I think it was Dr. Beatrix Hamburg who coined the phrase "predictable crises" in diabetes. You've hit some of the prime ones: Divorce, marriage, birth of a child, onset of a complication, and I'd have to add puberty to that list, as well as leaving home and going to college. There are many normal life transitions that diabetes interferes with and they interfere with diabetes, so it's a two-way street.
Diabetes stress touches not only the patients, but the family members, too. Just getting family members into healing is important and very, very difficult. The programs I run are always family oriented, but it's not always easy or practical or feasible to get family members involved. It's not just the patient who has been diagnosed with this disease, but it's the patient's spouse and the patient's children who will be affected, too. That's kind of a secret. It's as if a person with diabetes says, "Gee, if I've got diabetes, I've got to continue to do this. It shouldn't affect my two children." But it will affect them, so a lot of the burden that my patient may be experiencing is that it's inconveniencing her children and her spouse gets annoyed. Hey, that's OK. That's appropriate. We need to get him involved and then maybe he won't be so annoyed. He might be more engaged in the whole process. But health care professionals don't work very effectively with families, just like we don't work very effectively with emotional issues. The patient may be carrying the diagnosis, but the whole family has the disorder.
The Medical Community's Responsibility
Hoover: We've been talking about the fact that there is not sufficient understanding or recognition of the emotional problems related to diabetes, and therefore not adequate help for the patients in this area. Can you think of any action that patients might take in their own behalf to improve this situation?
Anderson: I believe the responsibility for providing emotional support to patients is in the hearts and hands of the health care providers. We can't expect patients to have their own support groups and find their own psychologists. Diabetes makes peoples' lives so complicated.
Hoover: Perhaps we could make them feel more comfortable about saying to their doctors, "I need this kind of help."
Anderson: That's a good point. Acknowledging and getting people to feel comfortable and not stigmatized by their diabetes are important issues to address.
Hoover: Unfortunately, so much of what the patients read about other people with diabetes-movie stars, athletes and other superstars who seem to be excelling despite their diabetes-makes a person wonder, "what's wrong with me?"
Anderson: That's the problem with role models. We have spokesmen and wonderful athletes who give their time generously to diabetes, but there is another side to it. One of my favorite colleagues, Bill Polonsky, says he'd like to do a cover for Diabetes Forecast that's all black and in big scary letters says, "Diabetes Sucks!" I know what he's trying to say. I think the reason people don't recognize that they have emotional issues is because we professionals hide it so well. I think we're afraid people won't take care of themselves unless we kind of make it seem like it's easy to do.
If you have diabetes, know that somewhere along the way you're liable to screw up. It won't be the end of the world, but you'll need someone to call. Having that phone number on hand will be important. Diabetes continues to be complicated, both to live with and to treat, but we can manage it best by helping each other.
0 comments - Jun 1, 1996