In our tiny town, Type 1 diabetics don’t make up a huge portion of our population. So, finding a diabetic support group (or even T1 diabetics) proved to be an issue after Milly’s diagnosis. Support groups are wonderful sources for inspiration and comfort, but we did not have the luxury of driving downtown for a JDRF meet-up. In fact, the nearest support group we could physically find was about an hour and a half away.
In the first few days after diagnosis, I spent my nights sifting through the information on the internet and found a few groups in social media outlets. I joined immediately and found good folks asking the same questions and getting the same 900 different answers as I was. In the Pediatric Intensive Care Unit, I had no clue where to begin to look for answers to questions that I hadn’t yet realized I needed to ask at the hospital.
The truth is that unless you are the caregiver of a child with diabetes very few people truly understand the depth of the change. Many try to understand. However, the sudden realization that food, lack of food, stress, sleep, anxiety, activity, etc……. could all cause harm to your precious child is overwhelming.
Table of Contents
Your Medical Providers
The first step in your support group must be your medical providers. While we were in PICU, a CDE (Certified Diabetes Educator) in addition to our brand-new endocrinologist and his team made regular rounds. In fact, our CDE came in with tons of new knowledge and explanations and totally overwhelmed us in our crash course on diabetes. BUT, she also stayed to answer questions and repeat those answers over and over again until we better understood what we needed to know.
Most doctor’s offices also have after-hours support. This is invaluable when the late night questions seem totally overwhelming. At first, I felt totally inadequate when I had to ask for help (especially in the late night/after hours when I knew I’d be waking someone), but sometimes you don’t know what you need to ask until it comes up in life experiences. Don’t be afraid to reach out during office hours or after. Diabetes is complicated, and going to bat (or phone) for your family is a good thing.
Never try to make changes to your diabetic treatment plans without checking in with your doctor or diabetes educator. If they are not working with you in managing your diabetic treatment plan, search for an office/doctor/educator who will!
Diabetic Support Online
Choose wisely when you search for information. Smart phones and internet searches are wonderful as tools to use moving forward. Many reputable groups such as Beyond Type 1 and Juvenile Diabetes Research Foundation have articles full of news and details. However, the downside of the internet is that too much knowledge can be acquired too quickly.
Rather than being encouraged at the star of our life with Type 1, I was often discouraged by the information I found. Diabetic complications later in life, horrible side effects, etc. In our society’s rush to dramatize every situation, I found myself going to places in my mind that I needed to avoid. Fear can be disabling, and we needed action.
So, if you find that after a few posts you are more discouraged than encouraged, move on.
Social Media
If you do a quick search for groups in your chosen form of social media, you will find that quite a few exist. Be cautious. There are some groups with amazing communities and resources to support you. Unfortunately, there are also a lot of sites that take a deep dive into pity and drama. I couldn’t handle drama. I had enough of it already happening with the diagnosis!
Take a look at the number of members and the tone of the advice. If you want people to give you a plan to move forward, you can find them. Groups exist for parents, caregivers, siblings, low-carb, no-carb and all-carb lifestyles. Ultimately you decide what strategy works best for your lifestyle. However, many of those groups are based on commonalities about life with diabetes. Eventually you can narrow down the information and find groups that best support your family. At first, you just need information!
In the beginning, I welcomed, as weird as that seems, hearing other people were as devastated as my family was. Misery loves company is a familiar quote for a reason. Just knowing we were not alone was worth its weight in gold, but after a few days I needed hope and action. I didn’t have time to wallow in pity, and I would not teach my daughter to do it either. So, I un-followed, un-joined, or deleted myself from quite a few groups, and we got to work.
By Device
Many diabetic devices have social media groups dedicated to specific devices. Dexcom support group, Tandem T-Slim support group, and Omni-pod all have groups where information can be gathered. More importantly, these groups are a place to ask questions and learn.
These groups can help educate you on the correct questions to ask in order to learn more about how diabetes and diabetic life work. When we wanted more summer flexibility, I found information on new ideas in online chats. I could then take the new information and new questions to our medical team and figure out what needed to happen moving forward.
My Personal, Atypical Diabetic Support Group
In the midst of all this, there were some friends who stepped right in and tried to help. In all honesty, there were also a lot of folks who couldn’t handle it. We learned quickly who our dependable people were.
Ironically, my personal diabetes support group includes no diabetics. My husband had a friend at work with T1D, but other than that we knew noone. So, my support came and comes through family and friends who cared enough to ask the questions and understand the answers. Precious people who would just check-in. Folks who cared enough to actually make a meal that was easier on Milly at family gatherings. Friends who all brought the same food to a dance because Milly could eat it!
Certain groups online and on social media who answered questions that I had simply because they had the same questions became part of my larger support network. Not all support groups have a physical meeting space. Sharing ideas and caring about others is the most necessary ingredient.
The most important thing is having access to inspiration and encouragement. If you can find answers and ask questions, that’s even better. Find people who care enough to check in with you again and again. Or find a place online that YOU can post or reach out to again and again.
What’s Next?
That will actually depend on the direction your family needs to move. The most common thing that diabetics share is the fact that every diabetic has a different version of diabetes. Just as there are no two people who share perfectly identical needs or looks or personalities or… your version of diabetic life will never be the same as anyone else. Accept that and experiment. Things will improve, and life will get easier with time and knowledge!
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