Dear Crucial Skills,
My 14-year-old daughter was diagnosed with Type 1 diabetes last year and we are always fighting in the home about her sugar levels and eating habits. She screams and shouts and blames us for everything. I try to be firm and not give in to her tantrums, but my husband is disgusted with her and speaks ill of her. I want her to see a therapist, he says she’s a lost cause. This breaks my heart. What can I do?
Signed,
Diabetic Drama
Dear Diabetic Drama,
My daughter was diagnosed with type one diabetes at age twelve. Much of your story brings back many feelings. I sympathize with your daughter, who is navigating an age when we’re all desperate to feel normal while dealing with a health issue that could make her feel abnormal. Some feel betrayed by their bodies when they get a startling diagnosis like this. Layer on top of that the conflict in your family and I’m sure it’s a tough time for her.
I’m sure it’s a tough time for you as well. I’m sorry that the division between you and your husband is adding to your stress. I knew little about the disease when my daughter was diagnosed, and I felt terrified of the unknown. I got incredible relief from learning that just a couple of good habits would promise her a healthy life. But it turned out that convincing me and influencing her were two different problems. For the first year she would frequently lie about her blood sugar, skip testing, and avoid adjusting her insulin when she was around friends. As a result, I panicked.
Things got better when I started to realize this was not a Crucial Conversations problem, but a Crucial Influence problem. The Crucial Influence framework reminded me that she didn’t just have motivation problems, she had ability problems we well. I grew more sympathetic and less impatient with her as I considered the host of personal, social, and structural barriers she faced.
An even bigger breakthrough came as Crucial Influence principles informed how I influenced her. For example, I realized that my attempts to motivate her were all forms of “verbal persuasion.” I’d remind her what her endocrinologist had said. I’d show her statistics about potential consequences of noncompliance. I reasoned, pleaded, and criticized. And nothing helped.
I got a hopeful idea when I read what I had written previously about intrinsic motivation in the book: When you want to motivate the unmotivated, nothing beats direct experience.
People don’t feel the way they do about certain behaviors because of the behaviors themselves. We don’t like or dislike doing something because of the task itself. How we frame it determines how we feel about it. Some people love cleaning house because they frame it as a way to achieve order or beauty. Others see it as a chore and loathe it. The task is the same; the frame is different. If you want people to feel differently about something, you must help them frame differently. And nothing shifts a frame like a direct experience—immersion in a reality that helps you connect your choices with their human consequences.
I invited my daughter on a Friday date after school. I let her choose a special place she wanted to have a treat, where I prepared her for what came next. Our stop would be an adult endocrinologist clinic where we would have a chance to visit with people who were years down the road with her disease. She was nervous but agreed it would be a good idea.
The visit changed her mental calculation about day-to-day decisions profoundly. She felt differently about testing her blood sugar because she had spoken with real people whose lives helped her see her decisions differently. One patient whose kidneys were failing and required weekly dialysis explained that easy testing was not available when she was first diagnosed. That one-hour experience changed how my daughter felt because it helped her to frame her decisions as protecting her kidneys, not obeying her parents.
Your husband may feel differently about your daughter’s struggles if he has an opportunity to attend a diabetes clinic to talk with those who share what it’s like for a teen to adjust to the disease. Your daughter may feel differently if she has a tangible experience with the longer-term consequences of today’s decisions.
And I hope you’re able to achieve better feelings in your home as you come to frame each other’s struggles in more sympathetic and effective ways.
Warmly,
Joseph
I also have a type 1 daughter, and your choice (people with health issues because of uncontrolled diabetes) would have backfired for her (similar to how Scared Straight from our childhood turns off this generation).
What worked for us was connecting her with her PEERS who were successfully managing it. This was through a diabetes camp that she attended, and the older teens (counselors) who were dealing with it every day was the example she needed and the impacts were huge.
For her, the motivation was not fear, but being able to see someone who was successful.
Hello! I’m a T1D myself (33 years), and I remember how it was when I was diagnosed. Its a time of high change for everyone, not just your daughter. The education programs really only cover the technicals of how to manage type I, not all the processes, issues, and dynamics that change with it.
One of the things my parents did when I was diagnosed was we did family therapy in addition to personal therapy for me. It helped all of us manage all of the changes, all of the grieving, and all of the feelings that are involved with such a massive change in our lives. Because diabetes doesn’t just affect one person, it affects the whole family in different ways.
The other thing that really helped me was joining a group of diabetics so we could just talk to each other. Seeing that I wasn’t alone was SO helpful! Making diabetic friends so I didn’t feel like I was always the oddball in the group helped me navigate those first years, and they were a sympathetic ear when I had trouble (and they also could say I was treating my parents unfairly and I believed them). Even if there are none in your area, there are online groups that are super helpful.
Good luck to you guys! Know that it does get better and your relationship will recover.
Jane McGonigal is a game designer and author of a book called SuperBetter where she talks about a game she designed for improving habits with children who need to take meds for health reasons. Very similar to the situation above. It’s worth looking into it.
The game has 3 tenets:
1. You are stronger than you know.
2. You are surrounded by potential allies.
3. You are the hero of your own story.
She tells one story about a boy needing to take meds for cancer and the game take him into his bloodstream showing him zapping all of the bad cells when he takes his meds. It’s a powerful visual for a kid to see the meds working inside them. When they can connect directly with what it does in their body not only does it increase their body-awareness but it helps them connect what they do with what they feel and what it’s doing for them.
Good luck!
I’m surprised this response didn’t address anything about the husband’s behaviour. If my husband “spoke ill” of my daughter, said she was “a lost cause” and especially if I thought he was actually “disgusted” by her, I’d view that as a very serious situation for our own relationship as well as his place in our family, and I’d need to have a Crucial Conversation with him ASAP about respect and responsibilities.
I agree with fkoziar. The parents’ conflict is telegraphing to their daughter that she’s broken and defective and this IS something to get really upset about. They need to project a calm, supportive, can-do attitude: “Yes, this is a bad break and we’re all trying to wrap our brains around it, but with the help of your medical team we’ll figure it out together so you can manage this successfully and live your best life.” I also agree with the posters who recommended getting in touch with other diabetic teens. The daughter will need some strategies to cope with challenging situations: What should she do when she’s invited to the team victory party with free pizza? How does she handle the person who shoves a slice of birthday cake in her face and won’t take “no” for an answer? I believe that kids today are more aware and empathetic than I was at that age, but she might run into a couple of mean and stupid ones who won’t invite her to get-togethers because “what’s the use, she won’t be able to eat anything we’re serving,” or won’t hang out with/date her because the glucose monitoring and insulin self-administration are just too “ick” for them. Mom and Dad will need to provide a soft, loving landing space for their daughter if she experiences those disappointments.
45 years of T1D here. I was fortunate because my diabetes was ‘discovered’ when I almost was comatose in high school after having lost 12 pounds literally overnight and walked to the family doctor’s office in town(rural setting), where I ended up hospitalized. Urine tests were the available option outside of the hospital; home bG testing wouldn’t become easily available for another two or three years.
Joseph’s suggestion(diabetic peer-group interaction) is great; it helps many individuals. Therapy with a psychologist who specializes in chronic disease is another option, as there can be a huge self-hating/self-destructive component from trying to imagine a rational reason *why* one develops the disease.
I love how you connected the Crucial Influence framework to this situation! As a mom of two kids with T1D, I resonated with the situation, and also appreciated the practical application of helping shift feelings by leveraging practical experiences. For my teen & pre-teen T1D kids, the social structures are incredibly influential; any advice as well about influencing the social structures?
Liz, when I was in that age range, my mom did little tutorials with the friends parents, and then she had me explain to my friends what I was doing, i.e. when taking my blood sugar, eating glucose tabs (back in the day, lol), etc. They even did little practice “shots” into oranges so they wouldn’t be afraid of the needles. It became part of the repertoire of our jokes – which is when you know you’ve made it with kids that age, they communicate via joke quite often. My mom kind of freaked out about that and thought they were being rude, but it was just a thing we did.
There’s a separate type of social support that I enjoyed, which was after they learned a bit, they learned not to treat me differently, which helped a lot. I wasn’t a weirdo to my friends, just me with diabetes, if that makes sense!
Lastly, hook them up with some folks who also have T1D. Summer camp with fellow T1Ds was fantastic because we all could look out for each other and it is such a refreshing experience.
Having a lifetime of perspective on this disease (56 of my 65 years) as a 9 year old child, first born, parent pleaser the transition was for the most part easy for me, but I can see now as an adult how stressful it was for my mother especially. She was the keeper of the clock, testing, injections, food selection and portions as well as physical activity. I just did as I was told. As I moved into my teen years I began to ask that hard question of why me? I was angry, but mostly at God. My daddy provided to me and my mother the counseling that several have recommended. Mom was able to gradually let go of her iron control born out of love and fear and allow me to suffer some relatively minor consequences enough that I was able to learn to manage my health. Both of us needed those changes. I too would recommend counseling for your family. Perhaps if your husband had a better perspective of who a “normal” teen is he would be able to develop some compassion and understanding for your daughter and be provided responses to her behaviors that would not damage their relationship. For my daddy it was a “This too shall pass.” approach knowing that as a teen the normal bumpy road between parents and their teens was going to be even bumpier for his diabetic, independent, head strong child. With the right support she will have the opportunity to grow into a place of acceptance. I could share SO MANY stories/lessons across the decades of my life with the disease, but have already gone on too long here. Support groups can be helpful in not feeling alone as a parent or as the diabetic child, but I would caution they are not for everyone. I did/do not do well in that environment as they seem/ed more of a gripe session with no positive influence. I never went to a special camp because my daddy wanted me to learn to navigate the world I would be living in with the disease the rest of my life. Despite my mother’s fears I flourished at church camp and I was heavily empowered by that experience knowing I as an 11 year old could do well for a week without my mom directing me. In closing, I will say that the life my mother envisioned for me, full of illness and any sense of normalcy, ending in an early death is not the life I have lived at all. I am frequently heard saying to people that diabetes has really just been an inconvenience in my life, not an inhibitor of it. I will pray for your family as you strive to navigate this difficult transition period. May your daughter come to a place of acceptance and responsibility for herself, that your husband learns how to best support you both through the transition and that for your loving and fearful momma’s heart for your family, may peace be yours knowing, with proper support, this transition period too shall pass.
I loved how you framed this within Crucial Conversations. I wish I had this when my kids were growing up. I would have been a better parent. I have a friend whose 6 year old daughter is going through a lying spell. It is harmless things like, Lying about brushing her teeth, taking a bath, cleaning her room. Nothing life changing. But what about when those lies become bigger. What can she do to curb this?
This was an awesome response. Thank you!