The Sibling Guide to Type 1 Diabetes

Editor’s Note: This content is a part of Beyond Type 1’s guidebook, which includes guides for everyone who has a type 1 in their life. Check out the rest of our customized guides for the different people in your life here!

The phrase “Type 1 diabetes runs in the family” has taken on a whole new meaning for me. Type 1 diabetes (T1D) has genetic markers and certainly runs in my blood. In 1991, my dad was diagnosed with type 1. 21 years later, I was diagnosed. In 2015, my brother. One year later, my younger sister, in 2016.

Type 1 diabetes ran in the family and through the family, hitting us one-by-one. However, we have learned together to not let diabetes run us. We’ve cried together, laughed together, tested our blood sugar together and have even shared some good vent sessions every once in a while—exclusive to only us T1Ds.

Every time we learned of a new diagnosis in the family, we were equipped and ready to help, armed with confidence, not fear. So what happens when a newly-diagnosed sibling of yours suddenly learns they have type 1 diabetes? How can you help? Whether you are a T1D or not, here are five simple ways you can help your recently-diagnosed sibling:

Do your homework!

Do your own research to understand what T1D is and what it is NOT to guide you in best practices in offering the best support for your sibling. Your sibling will truly appreciate investing in their life by taking the time to learn their disease and how it will affect their “new norm.” Diabetes is a complex web and the internet and literature out there can be quite overwhelming. Take it one day at a time and perhaps commit yourself to learning one new concept a week. Diabetes is a marathon, not a sprint! For starters, here is a list of major concepts to learn:

1. What is T1D? What are the other types of diabetes?
2. How do you treat T1D? What is insulin? How often does a T1D need to test their blood sugar?
3. What is the difference between a high (hyperglycemia) and a low (hypoglycemia) and what are the treatment methods? Warning signs?
4. What are T1D-friendly foods? What should I look for in foods in terms of nutrition? (carbs, sugars, ingredients, etc.)
5. What is insulin resistance? What is considered a healthy blood glucose (BG) range? What outside factors influence BG levels? (hormones, stress, medication, sleep, etc.)
6. What products and technologies is my sibling using in their management insulin delivery method? (pumps, injections, continuous glucose monitor (CGM)?) What do these gadgets do and how do they work?
7. What is an A1C and what does it measure?
8. What forms of safe exercise can I participate in with my sibling?

Show empathy, not pity

Empathy is sharing in someone else’s perspective and emotions. Pity is a feeling of discomfort and nothing more than an acknowledgement of one’s distress (Please don’t use the expression, “You Poor Thing!”) Empathy comes from a place of understanding and compassion, whereas pity only magnifies the pain one may be experiencing, almost in a condescending way. It is okay to acknowledge the difficulties your sibling encounters with T1D, but follow it with praise for their courage and strength. Don’t forget to remind your sibling of how great they are!

Understand the changes T1D brings to the family

1. Meals, family gatherings and holiday routines may change to accustom the new needs of your sibling living with T1D. It’s always appreciated by the T1D when there are food options that work for them. Nothing worse than showing up to a party or dinner and having little to no options! If you’re a family that cooks together, try finding healthy alternatives that will satisfy everyone.
2. T1D may cause mood swings and a likelihood of increased irritability in your sibling. Try to not take this personally! Rather, come from a place of understanding as T1D can be frustrating. There are days of unexplainable highs and lows, wild fluctuations, and the inability to find the energy to accomplish some of the smallest tasks. Sometimes all your sibling needs is space or just a listening ear to vent to.
3. Learn to adjust to your sibling’s new priorities and time management. T1D is often compared to a newborn baby that needs ongoing love, nurturing and attention—24/7. Your sibling may be investing more of their time and attention on their health. Be respectful of this and be patient with them. Allow them to adjust on their own timing.

Discover joint activities

Here are just a few ideas you and your sibling can do together that a) allow bonding time/quality time and b) support your sibling on their T1D journey:

1. Take cooking classes or try out your own recipes in the kitchen. If you are foodies like my siblings and I, we like to find healthy alternatives to all our favorite foods.
2. Get involved and show your sibling support through opportunities in the T1D community. Attend local events, volunteer, and help raise awareness alongside your sibling. That is true love!
3. Exercise! Spin classes, Yoga classes, Pilates classes, Barre classes, CrossFit—

The list goes on and on. In today’s world, the phrase “there is an app for that” can be translated to “there is a class for that” based on your fitness preferences. Find activities that you enjoy together. My sister and I love outdoor activities—hiking, biking, SUP, surfing. Our family also loves going to sporting events and concerts together!

Multiple T1Ds in the Family

For those of who you have multiple family members with T1D, like me, the best way to show support is to keep a clear line of communication open. In our family, we often FaceTime or text one another when we have questions. We have our own “T1D-only” group texts where we exchange ideas, advice and mix in a little T1D-humor. We refer to it as our own little T1D hotline.

Having four T1Ds in the family, you are guaranteed an immediate answer within minutes. The best part is that each one of us is in a different phase in our journey, we have varying approaches to our T1D management, and we come with our individual sets of struggles. However, we all share in the fact that our pancreas decided to ditch us.

T1D doesn’t define us, but rather unites us. If you are a T1D and discover that another sibling gets diagnosed with T1D, offer to be your sibling’s best resource for all things-T1D related and link arms and strive for positivity together. This disease is not easy, but you don’t have to go through it alone. My sister recently got diagnosed, so I offered to be her diabetic coach to help mitigate the overwhelming feelings you’d expect during the weeks following a diagnosis.

See the rest of our customized guides here.