The message came this weekend: a young woman who has long known she’s one of my personal heroes was facing a new challenge in her life and her adorable son’s life: helping him adapt to a Type 1 Diabetes diagnosis.
I was so glad she reached out to me immediately. I hate that I have 15 years experience being a D-mom, but I’m thankful that I can help someone new to all this move along the learning curve quicker.
But as I thought about it on my JDRF Ride to Cure training ride this morning, I realized it’s not just the family we all need to help out when a diagnosis hits.
We need to help their entire community. Since this young woman had a rocking group of solid friends, some of them had already reached out to me and asked for input. But I decided I needed to post a primer; a kind of Diabetes 101 that hopefully covers enough that when and if Type 1 strikes someone we know (or come to know), we can share this with their friends and family to get them started. Here’s my take on the basics friends and family of the child and the parent need to know from the start. Feel free to add more tips under the comments section, and share this post as needed. And to my dear new D-Mom: I hope this begins to help. We are here for you until the cure.
*There is a big difference between Type 1 Diabetes and Type 2 Diabetes. Type 1 is an “autoimmune disorder,” when the immune system gets confused and attacks the beta cells of the pancreas, whose job is to make insulin. In time the person with T1D has so few beta cells that their only way of survival is to inject artificial insulin. No matter how hard they exercise, lose weight or how they eat, this will never change until a cure is found. Type 2 Diabetes is a metabolic disorder in which a person still has a good amount of functioning beta cells, but the body has trouble knowing how to use the insulin they secrete. This is why in most cases but not all a person with Type 2 Diabetes can “train” their body to use insulin better. Which would you pick to have? Ummm, neither. I am very impressed that my new D-Mom friend’s friends are already saying “Type 1 Diabetes” each time they discuss her son. T1D is okay to say too, a new way of calling it. And keep in mind: A person with T1D did nothing to “Cause” his or her diabetes. Nothing at all. It’s just bad luck.
*And while we are at that, do not call the newly diagnosed person “A Diabetic.” They are a “Person With Diabetes” or a “Child with diabetes.” Labeling is just kind of yucky. Start out with those terms and stick with them. No matter what Wilfred Brimley says on TV. Oh, and here’s a FUNNY clip about what else not to say. Ha ha diabetes can be funny!
*Do not ask if numbers are “good” or “bad.” With T1D, numbers are what they are. Each person has their own “Target range” that the family and the medical team decide on. It can change from season to season and even week to week sometimes. And here’s the kicker: it’s near impossible to stay in “range” 100 percent of the time. So all we view numbers as is “Information to work from.” If a number is high, that means insulin is needed. If it’s low, food is needed. By embracing this, you can help the new D-family learn to not panic at numbers. It’s a hard thing to master! But the reality is, highs and lows are going to come. The good news is, they can be dealt with and all will be well.
*Do not go out and buy all the sugar-free candy and cookies you can find. It’s a lovely notion, but the reality is: those foods usually have as many carbs as regular choices, and it’s all about the carb count when you are dealing with T1D. Plus, some of those additives can give kids an…ummm, yucky stomach to put it delicately. Kids with diabetes can eat what other kids eat – so long as they take insulin. There are some sugar-free choices that are good for quickies. But if you are having a party, just make the cake and see if you can get a carb count for a serving for the mom to figure things out. No need for a broccoli cake! Ha ha.
*Don’t say things like ‘It could be worse. Suzy has cancer.” Of course there are things that are worse: there are things that are worse than almost anything. But right now, this is a trauma for the family, and it’s their personal trauma. Give the D-mom and the child time to be sad. I remember one friend calling me in the middle of the night when Lauren was sleeping and saying “Okay, I want you to just cry for a half hour.” And I did. It felt so good. Understand this is a big deal. It’s forever until a cure. They are going to rock it, but it takes time to accept it.
*Get educated yourself. I am so impressed that this new D-Mom’s friends are going to have me do a “Diabetes 101” For them all. They have always been an amazing and supportive group of friends – I’ve known them all like family most of their lives – and they are continuing that. Really learning is the BEST gift you can give a friend. I do recommend my book “The Everything Parent’s Guide to Diabetes” (and I don’t get a cent from it – JDRF takes all my profits and funds research with it! Yay!) It’s a nice basic book that gets you understanding things. It should be at your library if you cannot afford it; it’s cheap on-line though. But get the children on board too. My daughter has a similar group of friends to this D-Mom and part of the reason she’s had such a successful amazing life despite diabetes is absolutely those friends. Read here about them. Get the friends to understand – on their level – what is going on and they will lead everyone to helping the child just live life with this on board.
*Take action. The new D-Mom is going to need some time, even a year or more, before she can reach out and take action and start working toward a cure, but friends can do it right away. Make a donation (to my ride would be great ha ha), or tell your friend you are going to start a JDRF Walk to Cure team in her child’s honor (message me on comments and I can help you). Lead the way in working toward a better tomorrow while your new D-Mom friend and family work at learning all they need to learn to keep their child happy and healthy. I’m 15 years into this and every time I get a donation or see a friend helping out, I cry with joy. It’s an amazing gift to give: to show you care.
That’s a start. And trust me, just knowing you care will go a million miles for your friends as they adapt to this new way of life. Friends and family who are on board can make all the difference. Here’s to you doing just that.
9 thoughts on “Diabetes 101: Primer for the Friends and Family of the Newly Diagnosed”
What a fabulous blog! You are such a great person. Xox
All great! If ONLY we never had to hear “Did you give him too much sugar?” ever again.
Why do people keep saying this? Or when people say can’t he just not eat carbs? Or if he eats vegetables, fruit, vitamin e, cinnamon, etc you can get rid of his diabetes….sooo infuriating!! Its hard enough with a new dx why do ignorant people have to torture and blame the parent?
Well, Julie: have you TRIED The cinnamon? 😉 tee hee! They are just clueless. Like — wow wait until I tell the entire pedi endo program that there is a CURE! duh!
I love hearing stories about friends and families who rally! My parents have been too scared to learn much, but two friends have jumped in – that really makes a huge difference.
A great article. I have Type 1 diabetes myself and I remember having people asking if I ate too much sugar. No it just happened and I am living with it. My friends and family are really supportive which helps a lot.
Moira- Please let this Mom know about the Monthly Moms group in Hanover. The next meeting is July 25, at 7:00PM. So far I have learned a lot from these women who are all willing to share how their families face the challenges that come with Type 1. It is especially good in the beginning to know that you are not alone….
Nancy I’ll be bringing her! Such a great place for support! Thanks for all you do
Great article, most people never realize what Mom’s have to go through with a diabetic child. Mom has to become an expert in the disease and nutrition.