Diabetes Support Groups and Resources: Where Can You Find the Help You Need?
When I was first diagnosed with Type 1 Diabetes, I felt like I was alone. I did not know anyone else that had the disease. No one in my school had ever heard of it. I felt isolated and I thought I was weird. I didn’t have any diabetes support groups to attend.
It wasn’t until my first time at Diabetes Camp that I realized there were many other people going through the same ups and downs I was going through. Read on to discover more support resources for people and families living with diabetes.
You Are Not Alone!
Being diagnosed with a disease like diabetes can be extremely overwhelming. Besides having to learn how to care for yourself or parents having to learn how to care for their children, you can feel like there’s no one else out there going through the same struggles as you.
As sad as it sounds, back in the day when I was diagnosed, a lot of my classmates thought I was contagious. Therefore, they would not play with me anymore. Even the parents were skeptical.
Back then, there was no public internet. Knowledge about things like diabetes was not as widespread as it is today. My pediatric endocrinologist came to my school and did an assembly to teach everyone about diabetes. Things became much easier after that. (The kids started playing with me again!).
Diabetes Support Groups
These days, you can go on Google and find any kind of support group you want. There are many diabetes support groups in your local area. In fact, there are even support groups online.
One great resource for support groups is HERE at dlife.com. They have a comprehensive list of support groups and sites where you can search for diabetes support groups in your area.
The ADA (American Diabetes Association) has a wonderful website (HERE). On this site, you can learn about diabetes, find support groups, find care providers, and find just about anything related to diabetes.
They even have diabetes friendly recipes to help you with your meal planning!
Support for Kids
Usually, you can reach out to your child’s pediatrician or endocrinologist. See if they treat any other children with diabetes. Alternatively, look into Diabetes Camps.
One of my fondest childhood memories is going to Diabetes camp in the summer. There, I didn’t have to be “the kid with diabetes,” because we were ALL the kids with diabetes. Having diabetes was “normal” at camp.
Consequently, we didn’t have to overthink anything. We had trained medical professionals there to help us every day. Our meals were planned out. In fact, the carbs were already counted for us.
Overall, we did archery, swimming, arts and crafts, and many other activities. We went to the beach and played in the ocean. We had campfires and sing-alongs.
As a matter of fact, we bonded over a disease that used to separate us. Not to mention that within the experience, we made lifelong friends.
It is true that more and more “regular” summer camps are equipped to handle children with diabetes these days. However, Diabetes Camps are a unique experience that every child with diabetes should engage in at least once, especially if they’re newly diagnosed.
How Does Diabetes Camp Work?
Usually the summer is divided into several 1-or-2 week camping sessions. They are usually co-ed but sleeping arrangements are separate (and typically far apart!!). Counselors are assigned to groups of kids and they eat, sleep, and do the day’s activities together.
Many diabetes camps even have “Family Camp” for younger children, where your entire family attends camp with you. Some have family weekend retreats. Most Diabetes camps have sessions for children ages 8-12, and sessions for teens ages 13-15.
One of the greatest experiences a teen can have is the Counselor-In-Training experience. Starting at age 15, teens can transform their skills learned as a camper into skills as a counselor for other kids!
The Teen Age Diabetes Dilemma
Generally speaking, teens with diabetes tend to feel a lot of pressure to be “normal.” I know I did…I did not want anyone to know I had diabetes. I would hide in the restroom when it was time to take my medicine and test my blood sugar.
Teens with diabetes often purposely drive their blood glucose levels high in order to lose weight. In fact, there is a term that is catching on in the diabetes and dietetics communities. It is called “Diabulimia.”
Diabulimia is defined as “the manipulation by diabetic patients of insulin treatments in order to lose weight.”
According to the National Eating Disorders website (HERE), the following are the warning signs and symptoms of Diabulimia:
Emotional and behavioral
- Increasing neglect of diabetes management
- Secrecy about diabetes management
- Avoiding diabetes related appointments
- Fear of low blood sugars
- Fear that “insulin makes me fat”
- Extreme increase or decrease in diet
- Extreme anxiety about body image
- Restricting certain food or food groups to lower insulin dosages
- Avoids eating with family or in public
- Discomfort testing/injecting in front of others
- Overly strict food rules
- Preoccupation with food, weight and/or calories
- Excessive and/or rigid exercise
- Increase in sleep pattern
- Withdrawal from friends and/or family activities
- Depression and/or anxiety
- Infrequently filled prescriptions
- A1c of 9.0 or higher on a continuous basis
- A1c inconsistent with meter readings
- Unexplained weight loss
- Constant bouts of nausea and/or vomiting
- Persistent thirst and frequent urination
- Multiple DKA (Diabetic Ketoacidosis) or near DKA episodes
- Low sodium and/or potassium
- Frequent bladder and/or yeast infections
- Irregular or lack of menstruation
- Deteriorating or blurry vision
- Fatigue or lethargy
- Dry hair and skin
Of course, if you notice any of these symptoms in your child or teen, seek help from his or her doctor immediately.
All-in-all, if teens have positive diabetes support groups, they will be more likely to take care of themselves. They will not be as likely to skip insulin injections or glucose monitoring to “fit in,” or to lose weight.
All things considered, having diabetes support groups available to you (or your child) is an important aspect of diabetes management.
For the most part, adults with diabetes benefit greatly from shared knowledge and friendships formed from support groups (Not to mention stress relief!).
For children, seeing that there are others out there like you is, I believe, paramount in developing a sense of self-esteem. Speak with your kids. Make sure they have enough support and see that they have contact with other kids that have diabetes.
I believe that children who have support will realize they’re not alone in this disease. Consequently, they will develop a better understanding of why they need to control their blood glucose levels and take their insulin.
Thanks for reading, and have an AWESOME day!
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