Making Things Work
It’s hard to have a chronic illness like diabetes. You have to watch your weight, make healthy food choices, exercise, take insulin or oral medicines in many cases, and see several health-care providers on a regular basis. But there’s more to it than that: You must carry out these tasks while also being worried that you may develop complications such as eye or kidney problems or while feeling depressed or overwhelmed.
Having the support of others can help ease the feelings of fear or frustration that often go along with having diabetes. Research has clearly shown that people who have social support tend to do better managing their diabetes. Social support can mean different things to different people. You may feel supported when a family member offers to take you to a doctor visit. You may feel supported when a friend listens and lets you cry about how frustrated you feel. Or you may feel supported when your sister walks with you each morning so that you can stick with your exercise program.
When people with diabetes feel they have people who care about them, people they can talk to about their deepest feelings, they are more likely to stick to their self-care regimen, to have better blood glucose control, and to feel positive about their ability to cope with diabetes.
When you are married or in a committed relationship, the most important source of support is usually your spouse or partner. However, the marital relationship can also be the greatest source of conflict and stress. This article explores how a couple’s relationship may affect diabetes, how diabetes may affect the relationship, and how couples can work together to have both a healthy relationship and good diabetes control.
One affects the other
The quality of your relationship with your intimate partner can affect your general health and your diabetes control. Studies that have looked at the effect of marital stress on health have shown that your immune system, heart, and blood glucose control can all be negatively affected if you have a high degree of conflict and stress in your interactions with your partner. Your partner’s involvement in your daily diabetes care can also make a lot of difference. It can make a positive difference if, for example, your partner prepares nutritious meals, keeps track of your medicines for you, or exercises with you.
As for diabetes affecting the relationship, a partner can experience many of the same negative feelings as the person with diabetes. He may feel scared about what the future holds. Will his partner develop complications? Will she get sicker? Will she continue to be able to do the things they have enjoyed doing together? These are common fears that partners have. A partner may be angry, especially if the diabetes has been linked to being overweight, or depressed about the extra medical bills. While fear and sadness are common feelings, different couples deal with these feelings differently, and how they cope can result in either greater conflict or more closeness.
A tale of two couples
The Smiths and the Joneses illustrate two different models for coping with diabetes as a couple. Both couples have been married for 20 years, both have two teenaged children, in both couples both partners work, and in both couples it is the husband who has had diabetes for 10 years. But their relationships are very different.
Mr. Smith hates the fact that he has diabetes and doesn’t do much to take care of himself. He does inject insulin two times per day the way his doctor instructed him to, but he doesn’t monitor his blood glucose level, he eats whatever he wants, and he regularly skips his medical appointments. He’s had some vision and foot numbness problems. Mrs. Smith is very worried about her husband and frequently reminds him (Mr. Smith would call it “nagging”) to monitor, take his blood pressure medicines, and watch what he eats. Mrs. Smith does the food preparation for the family, and she tries to limit the fat and sugar in their diet, but Mr. Smith gets mad if she says anything about his reaching for a second helping or getting ice cream when they are out. She responds by telling him he should feel grateful that she is trying to help. They fight about his diabetes a lot. With all of the tension, they have both decided that it’s better to avoid the topic of diabetes altogether, so they try not to talk about it.
Mr. Jones has a different attitude about his diabetes. He also hates having it, but he’s determined to “lick it” by “being the best darn diabetic I can be.” He regularly meets with his health-care team. He is careful about what he eats, and he has asked Mrs. Jones to join him in following his diabetes meal plan. At first, she cooked special foods for him, but now the whole family follows the same meal plan as Mr. Jones. The Joneses try to take a walk together after dinner. Mrs. Jones is also worried about her husband, but she trusts that he is doing the best he can, and if he slips once in a while, she doesn’t say anything. They talk about his diabetes when one of them wants to, but they try not to focus on it too much.
You can readily see that for the Smiths, diabetes is a big problem, and how they cope with it causes stress and conflict in their marriage. Mrs. Smith is trying to be supportive, but she is offering “directive support.” This means that she takes responsibility for tasks that are really her husband’s, and she often tells him what to do, feel, or choose.
In one study of adults with Type 1 diabetes, psychologist Edwin Fisher, PhD. and colleagues found that directive support causes more negative moods and is probably counterproductive. Partners who provide this type of support run the risk of joining the “diabetes police,” a term coined by psychologist William Polonsky, PhD, CDE. The diabetes police are always watching to see if you eat the right things, check your blood glucose at the right times, and have the right blood glucose numbers. While they are usually doing this to protect you, it can be annoying and, by making you feel like a diabetes criminal, breeds anger, resentment, and shame. The way they are coping with diabetes leads to greater distance and will probably affect other aspects of their relationships.
In contrast, for the Joneses, diabetes is also a problem, but one they have both accepted as a challenge. They collaborate on how to deal with it. Mrs. Jones is providing “nondirective support.” She assists her husband and cooperates with his requests, but the responsibility for his behavior lies with him; she has not taken it on. She tries to be actively involved in his self-care regimen, and she also recognizes that it’s good for her and the whole family. Their nightly walks and talks contribute to more closeness and intimacy, so that they are ready to deal with the next problem that develops and work it out together.
In these examples, the husbands’ attitudes play a big role in how the diabetes affects the relationship. But it’s also true that the partner’s attitude is very important. Even though Mr. Jones takes responsibility for caring for his diabetes, the Jones’s relationship could still be marked by strife and tension if Mrs. Jones resisted making the changes that he requested or chose to simply ignore her husband’s diabetes.
What is support?
To better understand what people with diabetes and their partners need as they cope with diabetes, my colleagues (Drs. Ruth Weinstock, Jonathan Sandberg, and Roger Greenberg) and I interviewed 42 people with diabetes and partners and asked them what is helpful and not helpful in their interactions with each other.
We found that help with diet is most important. Some partners help with grocery shopping and meal preparation.
One woman with diabetes said: “My husband likes to cook a lot of meat. I ask him not to fry my portion, and he is fine with that. He sautés it or broils it instead. He is very accommodating of my dietary needs.”
Others focused on being sensitive to the need to time meals, especially if the partner injects insulin.
One partner said: “I’ve learned that he needs to eat within 30 minutes after the insulin, now that he is on that. So I am sure to let him know when I’ll be serving supper so he can time his injection correctly.”
Sometimes conflict develops, even with a supportive spouse.
One wife said: “I try to buy healthy foods. Unfortunately, my husband goes and buys other stuff that he likes to eat. I try to teach my kids how to eat healthy, how to live healthy. But my husband tells me not to tell him what to eat because he is going to eat what he wants.”
Next most important is emotional support — not what your partner does for you but how it makes you feel.
One person with diabetes said: “She is very cooperative. She thinks of me. I can’t ask for more than that.”
One partner said: “Talking nicely and asking him how he feels instead of telling him helps him feel better.”
Another person with diabetes said: “[I value] that discussion, that back and forth to try and figure out something that doesn’t make sense right away, and sometimes it still doesn’t make sense at the end. But sometimes there is a possible explanation, or we’ll discover a pattern. It is helpful having a sounding board.”
Finally, even though you want to avoid becoming a member of the diabetes police, our group said that it’s helpful if a partner reminds the person with diabetes about things like when it’s time to check blood glucose levels or take medicines or to pack a snack.
One person with diabetes said: “I am really active. I ski and bike, and I am out alone a lot. My partner is always asking me whether I have candy with me and whether I have my cell phone.”
But crossing over to “nagging” or “bugging” or constant “critical” reminding was the least helpful behavior. It’s often difficult for partners to find the line between helpful reminding and unhelpful nagging.
One partner who has struggled with this said: “[I have found that] nagging and being scared and nervous hasn’t been helpful. I think [it’s more helpful] if I am calm about things. If I see signs that suggest that he needs to check his blood sugar, I try to say something to him nicely. That basically helps and still makes him feel like a person, too.”
Dealing with low blood glucose
Low blood glucose (hypoglycemia) can develop when people who use insulin have injected too much insulin, have eaten too little food, or have exercised without extra food. Some oral medicines can also cause hypoglycemia under similar circumstances. These include the sulfonylureas, which include glyburide (brand names Diabeta, Glynase, and Micronase), glipizide (Glucotrol and Glucotrol XL), and glimepiride (Amaryl) and the drugs repaglinide (Prandin) and nateglinide (Starlix).
Hypoglycemia can cause shakiness, weakness, nervousness, headache, hunger, mental confusion, and blurred vision. If blood glucose levels get very low, a person can have convulsions or become unconscious. A partner who notices such signs and symptoms may need to act fast by giving the person food or a beverage that contains carbohydrate. However, if the person with diabetes has become confused and is not thinking clearly, he may resist the help. If the person with diabetes has lost consciousness and can no longer safely swallow foods or liquids, the partner will need to inject glucagon, which makes the liver release stored glucose into the bloodstream. In some cases a partner might also need to call emergency services.
Hypoglycemia is upsetting, both for people with diabetes and their partners. Both get scared, both get frustrated, and both can get angry, at each other and at the diabetes.
One partner’s comments captured the mix of emotions that can accompany a hypoglycemic episode when he said, “I get very concerned about her having a low sugar and I become very annoyed at the fact that it is going to go down or is down. We had an incident this morning. I woke up, went in the shower and came out, and I generally check her blood sugar before I come down and have breakfast. Well, she is laying there in a cold sweat and she has a 36 blood sugar. I get aggravated because I am on a tight schedule [and now] I’ve got to feed her something.”
A person with diabetes remarked, “Sometimes I get angry because of something that has happened. But sometimes it is a direct function of my sugar getting too low and affecting my mood and my thought processes. On at least one occasion, I more or less came to my senses to find myself sitting at the kitchen table and my wife sitting on the couch at the other end of the house crying because of something I did. I still don’t know exactly what happened.”
Another person with diabetes said, “If I developed hypoglycemia while we were out because the meal was late or for some other reason, he would get very angry and say, ‘This is why I don’t take you out anyplace.’ Then I would cry and cry and cry.”
Ways to collaborate
Having diabetes puts unique strains on a relationship, but it can also bring you closer together if you learn how to work together. Here are some ways to do that.
Get educated. It helps if both partners know what diabetes is, what must be done to manage it, and what to expect in the future. Your health-care team can provide the information, but in some cases, the person with diabetes may have to encourage his partner to join in the learning. If this is true in your case, ask your partner to come to a medical visit with you. Ask your partner what questions he has, and decide together how to get the answers. In addition to presenting general information about diabetes, educate your partner about your own specific self-care plan. If you set achievable and realistic goals and share them with your partner, he may be able to help you work toward achieving them.
Communicate. Talk about what you both need from each other. Talk about what is helping and not helping. Try not to be critical of each other but to approach this conversation with an open, nondefensive attitude.
Listen. Ask your partner how he feels about the changes you are making, then listen to the response. Don’t interrupt, don’t argue, don’t try to convince him that he’s wrong; just listen, not just to the words, but also to the feelings that are being shared.
Set shared goals. If you work together, you will probably get closer. So set goals for your diabetes management, like walking together after dinner, and talk about how to achieve them. Also, set goals for your relationship, like improving communication, and talk about how to achieve that, like setting time aside to talk.
If you and your partner are not working toward the same goals, you will get frustrated and angry. If, for example, you are doing your best to prepare nutritious meals, but your partner who has diabetes eats a lot of junk food and then gets angry when you criticize, you know what I mean. A frank discussion about what each of you sees as the problem, what goals you have, and what you are each willing to do to work toward those goals is essential.
Make room for negative emotions. Dealing with diabetes can lead to depression, anger, guilt, and fear, for both the person with diabetes and his partner. Sometimes, people get persistently angry or depressed, causing fights and emotional outbursts. These feelings become barriers in your relationship.
While it helps to be positive, recognizing negative emotions is part of the coping process. By accepting and experiencing these emotions, you can come to terms with the emotional impact of diabetes. And by sharing these feelings with your partner, you will decrease conflict and build intimacy in your relationship.
Get support from others. Even though your partner may be your main source of support, allow yourself to turn to other family members and friends, too. Doing so decreases the stress on your partner and provides an opportunity for other people in your life to feel involved and important and to experience the gift of giving.
Commit to nurturing the relationship. If your relationship is in trouble, admit it, talk about it, and recommit to nurturing the relationship. You can set aside time to take a daily walk and talk, go out on a weekly “date,” find ways to be thoughtful of each other (such as offering flowers or doing your partner’s chores), kiss good night, and make an effort to express physical closeness.
There is no standard for a healthy, satisfying relationship, and there are no limits on ways to develop and maintain one. Think about what happens in your relationship, and come up with creative ways to make things better. If you need some help, see a couples therapist. Often, a few sessions with an impartial observer can help you clarify the issues and develop a strategy to address them.
If you and your partner think of diabetes as a challenge that can either help or hurt your relationship — and choose to focus on what you have, not what you don’t have — you can be grateful that there is someone in your life to walk with you on this road that includes diabetes toward a healthier and happier place.