Family involvement is crucial to diabetes control.
By Daniel DeNoon
Reviewed By Brunilda Nazario
To change the world is to change the family.
-- psychologist Virginia Satir
Aug. 2, 2004 -- The world changes for people diagnosed with type 2 diabetes. It means big changes for their families, too.
How well families cope with these changes can mean the difference between rapidly worsening disease and a relatively healthy life. It's an opportunity for families to strengthen their relationships with each other and to improve every member's overall health.
But it's going to take work, says Susan H. McDaniel, PhD, professor of psychiatry and associate chair of the department of family medicine at the University of Rochester School of Medicine, N.Y. McDaniel is the author of six books on family therapy, illness, and health.
"The family has to be involved in any chronic illness that has to be managed, but especially diabetes," McDaniels tells WebMD. "The illness demands are so great. The outcome is so uncertain. And the constant blood-sugar monitoring can be so stressful."
Like it or not, the family is automatically involved when one member has diabetes. But this involvement is not automatically a good thing.
"Family members can be resources and can be very supportive. They can also be a problem," McDaniel says.
Diabetes: A Family Illness
Three main things make type 2 diabetes a family illness:
- Genetics. There's no single gene that gives someone diabetes. But there is clearly a genetic component to diabetes. And family members share the genes that predispose a person to diabetes. A diabetes diagnosis for one family member may mean that one or more other family members are also at risk.
- Food. When the family is living in the same household, everyone usually eats the same kinds of food at the same table. Even after kids grow up and leave home, they tend to eat what their families taught them to eat. High-fat, high-calorie diets increase the risks of obesity which put people at risk for type 2 diabetes. It's always a good idea to eat lower-fat, moderate-calorie diets. When one family member has type 2 diabetes, his or her health depends on a radically different diet. This change is much harder if the family doesn't change, too.
- Exercise. Sure, sometimes one family member gets plenty of exercise while everyone else sits on the sofa and watches TV. But when everybody else is a couch potato, it's hard for a person with diabetes to get the exercise he or she now desperately needs.
"The person with diabetes sees everybody else eating what they always did, sitting around like they always did, and there is little incentive for her or for him to make these difficult changes," McDaniel says. "Diabetes means a change for everybody to a healthier lifestyle. Interventions that target the family are usually more effective than those targeted to an individual."
We Are Family
Families mean different things to different people at different times of their lives, says Alan M. Jacobson, MD, head of behavioral and mental health research at Harvard University's Joslin Diabetes Center in Boston.
"Every family situation is different," Jacobson tells WebMD. "Not every family is two 55-year-olds with 22-year-old kids living down the block. Where there is a support system that is meaningful -- probably a spouse and adult children who may or may not be in the same community -- it pays to try to draw them in. When patients go to their diabetes educators, it helps for family members to sit down with the nurse or dietician to plan out what they are going to do here."
Americans' average age at the time of diabetes diagnosis is 46 years. Older people with diabetes may need to rely more on their spouses, especially if their children, parents, and siblings no longer live in the same household -- or even the same city. Younger people with diabetes face the uphill struggle of getting everyone in the household to pull together as a team.
And Americans are a people of many different cultures, notes Lawrence Fisher, PhD. Fisher is professor of family and community medicine and director of behavioral diabetes research at the University of California, San Francisco, School of Medicine.
"The broader culture is transmitted and changed by the family culture," Fisher tells WebMD. "'The beliefs that go back many generations help define what care is, what disease is, and what you can do about it. Experience plays a role, too. There are attitudes like, 'My aunt had diabetes, and even with modern technology, she had three amputations and died. So what can I do?' A lot of that is reinforced by family beliefs. These beliefs have a huge effect on disease management."
Family beliefs thus spring both from a family's culture and from a family's experience. This doesn't mean that everybody in the family is going to feel the same way, and agree on the same course of action. Far from it: Differences arise in every family faced with a health crisis. Resolving these differences means recognizing and giving voice to these differences.
Sometimes it also means struggling to change our cultural attitudes, Jacobson says.
"We live in a society where we now have way more food our bodies were designed to need," he says. "We expect more and more because the culture tells us to want more and more. We attempt to rebel -- through exercise and fitness -- but that means fighting against our culture."
Spouse Affected Most
Whether the children and parents of a person with diabetes live at home or have grown up and moved away, a diabetes diagnosis most affects a patient's spouse or significant other. It seems obvious. Yet this fact often goes unappreciated -- and unspoken.
"Many, many couples in which one partner has diabetes have never sat down and talked about what this is like for them," Fisher says. "They don't know what their spouses are thinking and their spouses don't know what they are thinking."
Very often spouses represent an unrecognized health problem.
"The data is very clear that rates of depression, depressive affect, and bad mood is high among spouses of people with diabetes," Fisher notes. "This isn't often attended to. Often the spouse feels no role in the disease. They are very concerned. This often gets them into the role of being the diabetes police. The patient takes a piece of cake and the spousal eyebrows rise."
Once these issues are out in the air, many people find that they can come to terms with what they've been avoiding.
"These are normal couples struggling with abnormal situations," Fisher says. "It is not that they are crazy or sick: It is a new situation. It is a husband, a wife, and diabetes -- a threesome -- and diabetes is often the elephant in the living room that never gets mentioned."
Resolving Family Roles
In every family, different family members tend to take on different family roles.
"One person wants to focus the family on moving on, and another wants to make sure the illness gets taken care of. A family needs both types," McDaniel says. "Some family members get so scared they don't want to go near any mention of the illness. Some get too involved, to the point where the patient gets angry and says, 'Quit telling me what to do.' That happens even in the most well-adjusted of families."
This is where a family therapist can help.
"I think with a little bit of tweaking, people move from polarized positions over time," McDaniel says. "The overbearing person may say, 'Well, probably I was overdoing it a bit,' and the avoiding kind of person may say, 'Well, maybe we do need to pay a little more attention.' Sometimes meeting with someone like me helps them see that every family has a continuum of response."
Unless the illness is overlaid on intense, unresolved conflicts, this doesn't mean weeks or months of family therapy.
"Sometimes just normalizing the emotional response to illness and giving people a space to talk with each other channels things in a constructive direction, rather than all that anxiety getting discharged as anger," McDaniel says. "Emotional reactions to illnesses like diabetes are totally normal. Being scared and angry and wondering what is to blame happens to everybody. It happens to family members as well as to patients. That is really important for people to expect. But they should know that it will get better. They will find a place for their feelings and for the illness."
Two basic things have to happen. Everybody in the family needs to feel that they matter -- that what they are doing is helping. And everybody in the family needs to feel that the meaning they make of the experience connects them to one another.
This works best when the family pulls together as a team, Fisher says. He lays out four basic rules:
- Respect differences of opinion, and resolve them in a collaborative way.
- Acknowledge differences of beliefs between spouses.
- Have empathy for what it is like to be the spouse of a patient.
- Respect the patient.
Jacobson says it's important for families to know what it is they're up against -- and to know that they aren't the only ones struggling with type 2 diabetes.
"What they are combating is a combination of biology and culture," he says. "The biology is that when we were designed, we were clearly made to meet the problems of having too little food. Having the capacity to store food was a benefit. Now that conflicts with our fast-food culture. It is a tremendous disadvantage."
Families soon find that it's not at all easy to make the changes now imposed on them. This generates anger.
"It is important for families to realize what they are working against. They have to realize that to make change they need as powerful a team as they can muster. They are in it together," Jacobson says. "There is no simple, quick solution. Maybe someday there will be a pill to take to make sure you are no more than 10% over your best body weight -- but now it is a matter of diet and exercise."
Finding enjoyment is the solution.
"Pleasure in succeeding is needed, because you have to replace the pleasure that food gave before," Jacobson says. "So if they find pleasure in seeing a 5-pound weight loss or in exercising a few minutes more than they could do before, that's the path to success. You can find pleasure in gradual change."
It's also important not to get sidetracked by inevitable setbacks. People, being human, will do better at some times and worse at others. Families need to be prepared for the long term.
The good news is that small improvements make a big difference.
"This is where biology is helpful. For people with diabetes, relatively modest improvements in exercise and fitness are helpful," Jacobson says. "You don't have to go from 55 pounds overweight to perfectly normal. And the biology of medicine does give us some help, with medicines that are helpful."
Diabetes is not an unmitigated disaster.
"Illness can be an opportunity for family relationship healing," McDaniel says. "It can be an opportunity to work out longstanding difficulties, now that it is clear that somebody is really sick."
She recommends getting on the right track as soon as possible -- soon after the diabetes diagnosis is made.
"My pitch is don't let it get to a disaster before you see somebody like me," she laughs. "It is so much harder to dig out of a huge number of abusive fights. When things just start to get derailed, it is easier to deal with than when there's been a train wreck."
Published Aug. 2, 2004.
SOURCES: Susan H. McDaniel, PhD, professor of psychiatry; associate chair, department of family medicine; director, Wynne Center for Family Research; director, division of family programs; clinical director, family medicine mental health services; and co-director, psychosocial medicine education, University of Rochester School of Medicine, N.Y. Lawrence Fisher, PhD, professor of family and community medicine and psychiatry; and director, behavioral diabetes research program, University of California, San Francisco, School of Medicine. Alan M. Jacobson, MD, head of behavioral and mental health research, Joslin Diabetes Center, Harvard University, Boston.
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