Your home should be a peaceful place for you to manage your diabetes and practice self-care, but that requires some communication with family, friends, or roommates. For this week’s community discussion, we welcomed Dr. Gary McClain, PhD, therapist, author, and patient advocate, to chat with members of the diabetes community about communicating about chronic illness at home. We were also joined by Jewels Doskicz, RN and T1D, as our chat moderator.
Q. Diabetes is a family disease. How has it affected yours?
A. Dr. Gary: I always say to clients, when one member of the family has a diagnosis, everybody has a diagnosis. Everyone is affected. Diet is affected for sure, but also daily household routines, finances, and planning for events. It can have an impact. Kids may take responsibility for how their parents feel. They may feel a bad day is somehow their fault. Talk it out! Plans may have to be modified or canceled if a diabetic parent is having a bad day. Kids need help understanding. Kids can benefit through sharing household duties and learning how to be supportive of a parent who needs extra help.
Jewels: Raising a five-year-old with type 1 diabetes (and having it yourself) is basically a circus act. There’s something diabetes going on all the time.
• The more I am willing to let them into my diabetes life, the closer my family becomes and the better my health. Support at home is crucial.
• They are all more aware and more cautious, but also stronger.
Q. Are your family members open with their diabetes concerns and frustrations? How do things left unsaid change your relationship?
A. Dr. Gary: I ask clients, “What would a fly on the wall say about your house?” Teens are so moody, you kind of have to duck and dodge to figure things out as you go. The emotions that diabetes brings up can be like an elephant in the room if nobody wants to talk about feelings. Unspoken thoughts and feelings can lead to shutting down with no one communicating. That leads to stress. Kids may be aware of when their diabetic parent is having a bad day or a good day. They may feel uncertain. The elephant in the room doesn’t go away. What’s left unsaid may find its way out sooner or later. The partner of a person with diabetes can feel like they are a low priority. Balance isn’t easy. Here’s an article on encouraging members of the family to share feelings.
Jewels: Dialogues about concerns are ever present with a T1D teenager. Being helpful and vocal works well sometimes and not others. We are always adapting.
• My family and I don’t talk about my diabetes much. I don’t treat it like it’s something that needs to be talked about.
• They are very supportive, but the less it intrudes, the better.
• I live with diabetes on the inside. They live with what I offer on the outside. They are affected and deserve a voice. Communicate.
Q. In what ways does your support system shape your dietary choices, or is it all you? Explain.
A. Dr. Gary: I talk to clients so often about diet and their family members. This is an area where people with diabetes really struggle. On one hand, they have a diet to follow. On the other hand, their family members want to eat what they enjoy. The diabetes diet is a healthy way to eat for anyone. But of course, kids don’t always see it that way and partners may not either. This is an issue that brings up a lot of guilty feelings in people with diabetes who don’t want their family members to feel deprived. But also, I hear stories about how family members who refuse to compromise may make it harder for the person who has diabetes to follow a diet.
Jewels: It’s not secret—we eat what I buy. Making a weekly menu for grocery shopping is a thoughtful way to shape our household choices.
• I try to make sure whatever is for dinner is liked and enjoyed by all. If it’s too much for me, I’ll either adjust or replace mine.
• I know what I want vs. what I need. I communicate that and my family has permission to help me stay on target. I get the ultimate say. It’s good.
Q. Regarding children in your life: Do you communicate with them about your diabetes? How open are your answers to their questions?
A. Dr. Gary: This can be a struggle. Parents can be afraid to raise alarms with their children, so they may hold back. Kids can tell when their parents are holding back. They may not articulate it, but they know. Kids may also hold back on questions, but may be worrying about a parent. This can lead to assumptions. Answers need to be age-appropriate. Parents can usually sense what their kids will understand. Keep in mind that with lack of information, our minds create stories—often scary ones. Kids do that too. Be aware of teachable moments, and make use of them.
Jewels: I’m an open book with my kids about diabetes. In a family, it’s vital that we understand, help, and celebrate each other.
• Very open! Children are some of the best question askers. They rarely have any judgement in their words.
• I do! My kids know a lot. My oldest says, “I wanna be a scientist so I can invent something to make diabetes go away for everybody.”
Q. What areas of your “diabetes life” are family members most helpful with? How did that evolve?
A. Dr. Gary: The person with diabetes in the house may feel unsupported by other family members. This can lead to sadness and anger. Family members who have diabetes may also feel guilty about how their needs impact the rest of the family.
Jewels: My family is most helpful and understanding with low blood sugars. I’m appreciative of their help when I’m not feeling well.
• Support. My family will always help.
• They are most helpful with not making diabetes the focus of everything. It took a lot of, “I’m not just diabetes!” to get here, though.
• Kids haven’t learned to be helpful yet. Wife gets my prescriptions, has me covered in emergency lows, and provides amazing empathy when I struggle.
Q. Diabetes is a disease often laced with emotion. How do the two mix for you?
A. Dr. Gary: I think we are often afraid of emotions. Afraid of what might happen if we express them or talk about them. It’s easy to feel defensive when issues arise. This article explains how to assume goodwill. Just asking what you can do for your partner can open the door to a dialogue. I encourage families to speak out of kindness and love.
Jewels: Worry is a common emotion for parents of a child with T1D. Learning how to tuck it in doesn’t come easy.
• I am full of emotions all the time! I’ve got tighter control, so less mood outbursts and freak-outs from lows and highs.
• Frustration. That’s a big one. I still can’t overcome that emotion. Frustration with devices, with physiology, just everything.
Q. What are the best support and advice ideas you could give family members of a newly diagnosed person?
A. Dr. Gary: If you want to know how a family member is feeling, ask. This shows how much you care. I always encourage my clients to be patient. Nobody is perfect.
Jewels: Greet your loved one first, talk about diabetes second, especially with children. People first, disease second.
• Don’t treat them differently than you did before. They are still them! Be supportive, not naggy.
• Don’t try to solve problems. Be there to support ideas. If you want to be involved, ask if that’s alright, don’t just assume.
• Ask questions, listen to answers. All people with diabetes have different needs to a degree. Remove judgement, focus on empathy. All will benefit.
Thank you to everyone from the diabetes community, especially Dr. Gary McClain and Jewels Doskicz, for joining in on this week’s chat.