“Sometimes I think I care more about his diabetes than he does,” says Ellen R. of Santa Clara, California. “I try to cook healthy, but he says he’ll eat what he wants. I’m scared about what will happen to him, but if he doesn’t care, what can I do?”
Her partner Mario sees it differently. “I’m trying my best,” he says, “but she wants me to stop eating everything I like. I work hard, and if I couldn’t have my pasta and pizza sometimes, I couldn’t get through the week.”
Debra is 60 years old with Type 2 and takes glipizide, a drug that lowers blood sugar by stimulating insulin. “I hate how he bugs me about checking my sugars,” she says. “He’ll leave the kitchen or bathroom a mess, and when I complain about it, he says my glucose must be low. I have gone low a few times, but I still need my husband to take me seriously.”
Albert has a different view. “A couple of times, Debra has gone low while driving and almost wrecked the car. I don’t think she checks her sugar enough to be safe. When I see a sign that she might be going low, I ask her to check, and she thinks I’m nagging her.”
When one member of a couple has diabetes, the other lives with it, too. Approaching diabetes as a team makes things better for both partners, so invite your partner to read this article with you.
“Partners of people living with Type 2 diabetes often have higher levels of distress than the person with diabetes,” said psychologist Lawrence Fisher, PhD, who studies diabetes in families. “This is especially true of female partners.”
“Partners often feel helpless,” he said, “especially if their loved one is struggling with their diabetes management. They may think, ‘I can see you’re not eating well. You’re not exercising or taking your medicines regularly. You’re going to get complications and who’s going to take care of you? Me!’”
And it works both ways — diabetes can affect a marriage, and marriage stress can affect diabetes. According to psychologist Paula Trief, PhD, “Studies show that your immune system, heart, and blood glucose control can all be damaged if you have a high degree of conflict and stress in your relationship.” Other studies report that marital stress interferes with people’s diabetes self-management.
Managing diabetes marriage stress
You probably have experienced some of the stresses diabetes can put on a marriage. To successfully manage these problems, couples must do two things: talk honestly about the issues and get help.
Start with communication. “Have a discussion about what you each need,” said Trief. “Start with, ‘One way you could help me manage…’ or ‘One way you could help me cope….’” This will not be a one-time conversation, but a series of talks over time.
These conversations can be difficult, though, and many couple prefer to avoid them. William Polonsky, PhD, president of the Behavioral Diabetes Institute, said, “Most people never have this discussion ever. They would rather smooth things over than work out the underlying problems.”
Couples can get on the same diabetes page, but they need some skills. The important thing is listening. Trief recommends the “speaker-listener technique,” a marriage counseling practice quite different from our typical back-and-forth conversations. “One person speaks at a time,” she said. “The speaker says, ‘This is what I feel or think,’ and the partner’s role is just to listen, then repeat back what the speaker has said.”
Don’t argue or defend yourself, just repeat or paraphrase what the speaker has said until the speaker agrees he or she has been heard. Then the listener becomes the speaker.
“That way,” Trief said, “you get to hear from each side. Too often it becomes all about the patient and how to help him, but the partner has issues and needs, too. Couples have to help each other.”
If the challenges of diabetes seem overwhelming, discuss situations or obstacles you have overcome in the past. You might find sources of strength and ideas that will help with current problems.
Things to talk about
Here are some of the common issues diabetes brings to marriages.
How involved should the partner be in diabetes management?
Every couple is different. Some people with diabetes want near-complete independence. (“This is my condition. I’ll manage it.”) Others want all the help they can get. They want to share their glucose numbers and plan meals with their partner.
Some partners want to be intimately involved in diabetes management. Others want as little to do with it as possible. Some couples want to focus on diabetes; others want to minimize it. Any pattern is OK, as long as you agree with and understand each other.
How will I support you?
Trief said families need to learn “non-directive support. The partner assists and cooperates with the person with diabetes’ requests, but the responsibility for his behavior lies with him; she has not taken it on.”
Less effective is “directive support,” in which the partner tries to manage the other person’s diabetes. The partner takes responsibility for tasks that really are the patient’s, and he of she often tells him or her what to do, feel or choose. (“You shouldn’t be eating that, should you?”)
Polonsky calls directive support “diabetes policing.” It doesn’t feel good for either party. One partner told me, “I prefer to let the doctors and other people nag him instead of me. I don’t ever want to get into a situation where I’m policing someone’s food, because that’s not helpful.”
If diabetes policing is a problem for you, discuss the issues and work them out. Polonsky said, “If your spouse is bugging you to do something, or doing too many things for you, they’re usually coming from a place of caring and love, even though they’re driving you crazy. Don’t just ask them to stop. ‘Leave me alone’ isn’t going to work. Instead, guide them to how they actually can be helpful.”
Techniques for talking about diabetes
Just listen, don’t interrupt. Just look at your partner and focus on feelings and body signals as well as words.
Use encouragers: “Mm-hmm,” “I hear you.”
Repeat back exactly what you heard. “So I hear you saying that you don’t like the vegetables I’ve been cooking.”
Paraphrase: “I want to go to the party, but I’m nervous about all the sweets they’ll have there.” “So you’re afraid you’ll eat sweet stuff if we go to the party?”
Say what “I” think or feel, not what “You” did wrong. Include how the concern makes you feel. “When you ask me to check my blood sugar in front of other people, it makes me feel like a baby. Let’s work out another way.” (Note: Not “Why don’t you treat me like an adult?” or “You don’t respect my independence?”)
Put hard things in a sandwich.
Start with a positive, then voice your complaint (in an “I” message) and finish with another compliment or stroke. “I’m so happy that you are watching what you eat and cutting down on carbs. I know that’s hard for you. But I’m worried that you seem to be smoking more. I love you and don’t want you to get cancer.”
Diabetes can bring difficult emotions for both partners. Chronic illness expert Maggie Strong says patients and partners are both likely to feel:
• grief over the patient’s losses and the loss of the life he or she used to have;
• frustration with not knowing how to help, or with nothing they do seeming to work;
• guilt over the partner’s suffering (“Why is it him and not me?”) or thinking he or she may contribute to the partner’s problems;
• anger with the partner for not taking better care of him/herself, or with other people who are perceived as making things worse;
• fear over the progression of illness and what it might bring;
• jealousy of healthier couples or of the partner with diabetes getting all the attention; and/or
• boredom with the loss of spontaneity and limits on activities.
If emotions are not expressed, each partner starts to feel alone, helpless and sometimes hopeless. If you can express feelings to each other without blaming, you will better understand what your partner is going through. Each partner also should have other people he/she can talk with about his/her feelings.
The check-in checklist
Ann Steiner, PhD, recommends some topics to discuss with your partner in a regular check-in. Decide if you want to check in monthly, weekly or on an as-needed basis. Both partners should report, not just the partner with diabetes. Just listen as your partner checks in. After you have both spoken, you can problem solve and bring up whatever else you want to discuss.
• How I’m feeling. How are my symptoms and abilities these days? What are my biggest concerns?
• How I’m doing emotionally.
• What you are doing now that helps me.
• What you are doing now that doesn’t help me.
• What I most need from you.
• Always ask, “How can I support you?”
How much are you and your partner willing to change your diet? Diabetes wants you to cut way down on starches and sugars, and people don’t always like that advice. It might be the person with diabetes who resists changing foods; it might be the partner or other people in the family.
Sometimes couples will try to prepare separate meals for the person with diabetes, but it’s usually better if the whole family can eat the same food. Healthy for diabetes is healthy for everyone, and separate meals put huge demands on the food preparer. “Time-wise and cost-wise, cooking two separate meals can be impossible,” said Fisher. “The family usually comes first, so the person with diabetes might wind up eating a lot of rice and beans if that’s what the family eats.”
Couples need to talk honestly about their food concerns. It helps to plan a menu together and make a shopping list based on that menu. You might want to include your children in that discussion. Going food shopping together helps couples cooperate on food.
Get help with this. Make an appointment or take a class with a diabetes educator or nutritionist to learn about healthy diabetes eating. Learn how to read Nutrition Facts labels. It’s good to do these activities together.
Preventing hypos or low blood sugars
Hypoglycemia (low blood sugar) is a big problem for partners of people with Type 1 or Type 2 who inject insulin. Hypos also are a risk for those who take sugar-lowering sulfonylurea pills (glipizide or glyburide, among many others) or shorter-acting glinides such as Starlix or Prandin.
Patients tend to not remember hypos or to downplay them. They’re a much bigger issue for partners. “It’s a big, big fear,” said Fisher, “because the partner has to pick up the ball if something happens.”
Patients on insulin or sulfonylureas need to carry glucose drops or sweets with them at all times and check their sugars when there’s any doubt. Couples should work out ways for the partner to remind the patient without making him/her feel like a child.
Trief said one of her patients’ partners reported, “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 he needs to check his blood sugar, I try to say something to him nicely.”
When a person injects short-acting insulin, he/she needs to eat very soon. Food can’t be late. According to one of Trief’s research patients’ partners, “I’ve learned that he needs to eat within 30 minutes after the insulin. So I am sure to let him know when I’ll be serving supper so he can time his injection correctly.”
Sex and intimacy
Diabetes can interfere with a couple’s sex life through loss of function, loss of desire, the effects of medications, and other symptoms such as fatigue and pain or depression. For many couples, restoring and maintaining physical intimacy is an important part of keeping love alive.
These issues are rarely talked about. This is sad, because sexual function can be restored or improved with various management techniques or medication changes. Talking with a diabetes educator, sex educator, or doctor might help to approach these issues.
A good online primer at About.com
The Well Spouse Association
Support and information for spousal caregivers
Maintaining or restoring intimacy and passion in long-term marriages
Messages: The Communication Skills Book
By Matthew McKay, Martha Davis and Patrick Fanning.
New Harbinger Publications 2009
Sex and Diabetes: For Him and for Her
By Janis Roszler, RD, and Donna Rice, MBA
American Diabetes Association 2007
The Secrets of Living and Loving with Diabetes: Three Experts Answer Questions You’ve Always Wanted to Ask
Janis Roszler et al.
Surrey Books 2004
Diabetes costs money and can cut into your earning power. Roles may change; the partner with diabetes may go from being the primary financial provider to doing more household managing and childcare. People sometimes can work from home. If necessary, a person with diabetes can apply for disability pay, which can ease financial pressure. All this requires communication.
Including partners in your diabetes world
If you both agree, having your partner at medical appointments, diabetes training and support groups can benefit both of you. You will learn the same things and give each other support.
Support for both of you
Therapists, diabetes educators, nurses, clergy or others can help couples communicate. Doctors, support groups, educators and the internet can help you find information. Friends and family can provide practical support. Ask them.
For a couple to thrive with diabetes, the needs of both partners must be met. Both partners need support; both need their own lives. Some compromises may be necessary, but the goal is to maintain a balance so that both partners feel loved and fulfilled.
Value your relationship
Maximize the good times you can have together. Perhaps you can generate a list of fun things you can do, and set dates to do them soon.