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Nowadays, we have the power of social media to glamorize our insulin pumps and help connect a ton of type 1 diabetics (T1Ds) all over the world! However, I am still a huge fan of real-life diabetic support groups.
I know, I know, I know, it sounds cheesy – and I thought so too at first, just ask my mom 😉 but, over the years, I have come to find support groups absolutely essential, and I’ll tell you why.
Diabetes support groups play a crucial role in the management and well-being of individuals living with diabetes. I cannot express the number of ways diabetes support groups helped my family and I learn and grow!
I’ll be honest here, initially, I was ashamed and embarrassed of my diabetes, thus resistant to participating in a Diabetes Support group and balked at the idea of actually attending one!
Two of the biggest obstacles in starting your T1D journey are:
1. ACCEPTING your diagnosis.
2. TALKING about it.
So, ok. Yep. I HAVE TYPE 1 DIABETES. Boom. I said it. It’s out there. *Gulp*
When I was a newly diagnosed ‘betic, my childhood bestie’s mom was a doctor. Dr. Rice could tell that I was struggling – hell, maybe she could tell my parents were, too. She connected us with a local support group, and because she is an angel, even took us there the first time.
Naturally, I didn’t want to go, because I was SCARED. I was in complete denial about my diagnosis; and really, who wouldn’t be? That’s a huge thing to try to wrap your head around! The numbers, the needles, the NERVES – it’s so much to process when you just want to be a “normal” 12-year-old.
I objected so much to going that my mom promised me that we would only have to go this once, since we were obliged to join my friend and her mom, but after that we didn’t have to go again if we didn’t like the vibe.
As much as I wanted to run and hide, I had to face my fears. And surprise surprise, it wasn’t as bad as I thought! There were other teenagers there! Real life Diabetics, who aside from my T2 grandpa, I had never met in real life! Plus, in this particular group, they separated the kids and the adults. So, while Mom and Dr. Rice got some great (but boooooring) information about how to get your kids to count their carbs, or how to speak with teachers about treating lows, I got to talk openly with kids JUST LIKE ME about managing sleepovers, birthday parties, and team sports. Sometimes it wasn’t about Diabetes… sometimes we just got to be ourselves with people who knew what it was like.
I cannot emphasize enough how life changing this experience was for me, and I think the support group was life changing for my parents as well, in different ways.
Getting to Know other parents who initially had the same concerns and navigated through them, provided living proof that life with T1D is manageable, was a huge weight lifted off their shoulders, in some ways.
As I’ve already confessed, initially, I thought it was silly to go, and thought only babies need to do that. My mom was out of her comfort zone too, because she was raised to handle everything at home and not admit you are silently struggling. (Side note, this is a very old school and unhealthy thought process, that I am working very hard to heal this generational wound and reverse this mentality. I can’t express to you enough that you should never have to suffer alone or carry heavy emotional baggage alone. The impact is profound and takes a toll on your mental health. Please seek professional guidance as well as lean into your personal support system. People care, and it is more than ok to reach out or ask for help if you are struggling.)
Anyway, back to the story. We took the plunge and went to the first diabetes support group meeting.
The following week was “Bring a Friend” week, which was sooo perfect. So, we showed up for a second time. It helped to “normalize” this awkward situation, because I had someone who cared about me and supported me right by my side. Not to mention, she and her own mother got to ask questions they had, whether it be about Diabetes in general, or how to help during lows.
I genuinely hope you have a friend like that too, who shows up for you, when you don’t know how to show up for yourself, and who helps pick you up and hold you up when you are too scared or frozen and don’t know what to do next.
Being diagnosed as a teenager brought a whole extra layer of drama to the mix. I think I’ve lived with a low-lying level of anxiety since I was 12 years old. Until I had my 1st kid at age 35, I was always slightly worried that I wouldn’t be able to achieve my dream of being able to have a baby. I felt a desire within my heart from a young age to become a mother one day, and this weighed heavily in the back of my mind.
Not only that, but I know that when I was a teenager, I cared so much about what other people thought about me, and I was so afraid of being judged by others, I would do anything to avoid having to tell people about my diabetes. The problem with that is, there’s NO WAY to hide this diagnosis forever: flashback to when a friend’s boyfriend LOUDLY whispered what was all that “stuff” on me. I saw him looking, I saw him asking, she saw me see him asking, it was an awkward mess.
Or another time, when my friend’s older sister asked me condescendingly, “why’d you bring your pager to the beach? You think you’re so cool that you’ll need your pager here?”
And, as ridiculous as it is, at the time, I was ashamed to speak up and say it’s my insulin pump.
After that, I felt so embarrassed and humiliated, that I would remove my insulin pump tubing before going to the beach or pool. I would be disconnected from my pump for hours or all day. My blood sugar would skyrocket, and I would feel awful. Looking back, I feel terrible that I neglected my diabetes and health due to worries about other peoples’ judgement.
I am glad that I have come such a long way on my diabetes journey, and today, I am thankful to have such wonderful medical technology and am now thriving and confident in who I am with diabetes, and I am proud to wear my medical devices for all to see.
I’ve learned from the above experiences that being open, honest, and transparent about my day-to-day diabetes journey is hands down the better route.
In fact, I’ve had a few people notice my devices in public and approach me with questions.
One mom spotted my insulin pump that was clipped to my bikini on the beach in the Caribbean and came running over. Thankful to encounter another diabetic, she asked me questions about how she could keep her young son’s blood sugar from going low with so much swimming and activity and him not wanting stop and take a break to eat.
Another mom noticed my pump and CGM while on vacation at a resort pool and stopped by to ask how long I had had diabetes and asked if I liked my pump and CGM? By the end of our conversation, she told me that she had diabetes for about 30 years and had always been curious about trying the same pump I had and was now convinced to give it a try after talking to me!
I love meeting other diabetics “in the wild”! It’s an instant connection with a stranger. Your heart can relate to a stranger’s because you understand aspects of their life on a deeper level. If you know, you know.
OK, so we’re talking about all this “Acceptance”. And now there’s more “Talking”?
In the beginning, I had a very difficult time talking about my diabetes without breaking down and crying. I absolutely believe that I went through the five stages of grief .
I won’t lie to you, my friends, it can be kinda strange to just randomly tell a person you just met, be it a co-worker, your friends, or even a loved one, that you have or have recently been diagnosed with diabetes. Most people don’t know what to say or what to do, and I get it. Like, what should a person say? Some of my favs are: “Um, ok?” and “That’s rad”. Sometimes you get a little luckier with the supportive “Thanks for letting me know?” (yes, as a question lol) or “Ok, what do I need to do?” Oh man, what about the “Brave” speech? “I can’t imagine pricking myself 5x a day, I don’t know how you do it!” Well, I’ll tell ya that it has A LOT to do with the fact that if I don’t, I’ll die. *shrug*
The fact is, the more you TALK about your diagnosis, the more comfortable you ARE talking about your diagnosis. And let’s be frank – even if you don’t get it out in the “open” initially, if you wear visible insulin pumps and CGMs on your arms/legs, it’s pretty obvious to people anyway. I’ve found that sharing my diagnosis with newbies helps avoid those stares or uncomfortable attempts at “taking care” of you at the company potluck (seriously, Karen, I think I’ll be the one to decide if I’m going to eat your homemade coconut cream pie, thanks).
If you can’t already tell, I am 100% here for social awareness! Having diabetes is NOT the end of the world. It doesn’t change who you are or your value as a human being, it’s not contagious, and it is nothing to be ashamed of. I get it that people don’t want to be offensive, but to me, asking questions is not offensive! I want all the questions asked! I want to share all the knowledge! I want people to know so much about T1D, that it becomes as common as discussions about how cute baby monkeys are on the internet (for real though, look at this adorable babe). It’s a hard topic to navigate, I know – but I believe in you!
Another time I joined a diabetes support group was when I was pregnant with my daughter. I had just left my first doctor appointment with my perinatal specialist. He made me feel that I could not get happy or excited about my pregnancy and having a baby because of my diabetes. He lectured me on ALL of the complications of pregnancy and delivery with T1D, even if it was well controlled. He basically said I wouldn’t be able to take a sigh of relief until my baby was born, and indicated even then, the baby could develop complications or birth defects because of my T1D. I was horrified. I had already suffered two miscarriages. My diabetes was well controlled. My A1c was the best it had been, like ever, in 20 years, it was 5.8! I fully understand that it is part of the doctor’s responsibility to educate the patient on potential risks, however, have some bedside manner and review the labs and base your stern discussion on facts. He treated me like a negligent, uncontrolled diabetic with A1c of 12 and average glucose reading of 300. I left his office and called my husband and mom crying. After calming down, I decided that I am a human and a patient and I have the right to find a provider who is a better fit for me, and I did just that!
One of my husband’s clients also had a rare health condition and raved about her specialist and knowing his wife is a T1D, told my husband, “if you guys ever decide to have kids, go see Dr. Francois! She is the best in town!”
The rest is history. Best in town is an understatement, BEST in the country is more like it! She is probably the BEST provider I’ve ever had! I love her dearly. If you live in the Phoenix/Scottsdale, AZ area, do yourself an favor and look her up! Plus, she has an amazing spa right inside her clinic! Does it even get any better then that???
Back to the online support group. After seeing the first really terrible pregnancy specialist and having him scare the crap out of me, my sister suggested that I join an online Facebook support group. She reassured me that plenty of other diabetic women have had very successful pregnancies and delivered healthy babies. She thought it would be really helpful for me to be able to connect to other women who have walked the same path before me and could be a great resource for me to ask questions and feel encouraged. She mentioned to me that she had joined an online support group that really helped her navigate her thyroid cancer journey.
As I mentioned at the beginning of this blog post, nowadays we have the amazing power of social media, and I am so grateful for it bringing me the ability to connect with other T1Ds “in the wild”. It’s incredible to be able to research and look up hashtags on Instagram and Pinterest and instantly be connected to another T1D. You can message each other and bounce questions off each other, etc. The T1D community is so strong that you can even reach out to find people to help loan you supplies if you run out or in crisis times.
The overwhelming sense of love you can share with a stranger that you just met, but both are connected by one common thread, is a beautiful thing to me. I love how much other amazing T1Ds bare their souls and let their guards down enough for the whole world to see. Building each other up and lifting each other up is what life is about. I can’t tell you how many cool “life hacks” I have learned through social media connections.
Even now, I go to support groups, only we don’t really call them support groups, cuz you know, that sounds kinda lame. It’s funny, because I’ve actually been connected, through the power of social media, to other T1Ds in my area, and then we have “meet ups”. It’s so cool and casual and chill and low key. Sometimes we meet at parks, or restaurants, or big events. It’s fun, and you get to share and learn a lot. It really makes my heart happy!
Whether online or “in-person,” diabetes support groups are so important for many reasons because they provide:
- Emotional Support: Living with diabetes can be emotionally challenging. Support groups provide a safe and non-judgmental space where individuals can share their feelings, fears, and frustrations. Connecting with others who understand their experiences can help reduce feelings of isolation and depression.
- Information and Education: Support groups offer a valuable platform for sharing information about diabetes management, treatment options, and lifestyle changes. Members can exchange knowledge, tips, life hacks and advice that can improve their quality of life while navigating diabetes.
- Peer Inspiration: Meeting individuals who have successfully managed their diabetes can serve as a source of inspiration for others. Seeing real-life examples of people who have overcome similar challenges can motivate individuals to take control of their own health. This “hits home” for me especially, because I have first-hand been inspired to skydive, scuba dive, and take on a 3-day mountain hiking and camping trip in the wilderness.
- Accountability: Being part of a support group can help motivate individuals set and maintain health-related goals. The group can provide accountability and encouragement for managing blood sugar levels, adhering to medication regimens, and making positive lifestyle changes.
- Practical Tips and Coping Strategies: Members can share practical tips and coping strategies for dealing with the daily challenges of diabetes. This might include meal planning, exercise routines, or strategies for managing stress and complications.
- Sense of Community: Joining a support group fosters a sense of community and belonging. It helps individuals feel that they are not alone in their journey and that there are others who are willing to support and empathize with them.
- Empowerment: Support groups can empower individuals by providing them with a voice in advocating for diabetes awareness and policy changes. These groups can collectively work toward better diabetes care, access to resources, and reduced stigma.
- Networking: Participants can build a network of contacts within the healthcare system, connecting with healthcare professionals who can provide guidance and expertise. This was huge for me. Through networking, I have been connected to so many amazing healthcare providers from dieticians to Endocrinologists and other specialists that I never would have been able to find on my own!
- Reducing Stigma: Support groups can help reduce the stigma associated with diabetes. By sharing personal experiences and information, they can raise awareness and understanding about the condition in the wider community.
- Family and Caregiver Support: Diabetes doesn’t just affect the individual living with it; it also impacts their family and caregivers. Support groups can provide resources and assistance for those who support someone with diabetes. I love this because so much of the focus is usually on the individual living with diabetes, and we tend to forget how much our loved ones are impacted by T1D as well. As a parent now, I often times find myself taking a step back to reflect and look at how I would feel as a parent helping manage a T1D child. I have profound respect for my parents, as well as other parents who have had to add that complex layer to navigating the already challenging aspects of parenthood.
Additionally, although Diabetes Camp is not technically considered a “Support Group,” I still thought it was worth mentioning in this blog post because attending a diabetes camp shares many of the same benefits that attending support groups do.
Both support groups and diabetes camps have a positive impact and help facilitate greater knowledge of diabetes management, manage behaviors, increase confidence to manage diabetes, and improve emotional well-being.
Each year, more than 18,000 children are diagnosed with type 1 diabetes, a life-changing disease that requires 24/7 control for the rest of their lives. Children with diabetes and their families walk a tightrope to keep blood glucose levels not too low and not too high.
Diabetes Camps are designed to facilitate a traditional summer camp experience in a medically safe environment, while creating opportunities for children to forge life-long relationships, overcome feelings of isolation and gain self-confidence. Spending time at summer camp is a rite of passage every child should have the opportunity to experience.
Because the American Diabetes Association (ADA) and camp team understands exactly what it takes to keep your child safe, the staff of physicians, nurses, dietitians, and counselors provide round-the-clock care, so you have peace of mind while your camper is away.
Financial assistance is also available, so no child will have to miss out on camp just because of the cost.
I personally attended a diabetes camp in Michigan (Camp Midicha) as a camper when I was about 13 years old and had the time of my life! As a result of attending diabetes camp:
- I was able to share adventures with peers who could relate to my experiences with diabetes
- I rose to the challenge of achieving a few diabetes “firsts” in a medically safe environment, like giving myself an insulin injection for the 1st time (prior to camp, my mom always gave me my injections, but with encouragement from my peers I was able to take the plunge!
- My confidence increased at camp and after as we celebrated every milestone and how far we’ve come
- I made lifelong friends and memories that I will cherish forever, which is priceless to me!
I was lucky enough to return to diabetes camp as a diabetic counselor (DC) for the teen adventure program (TAP) through Camp AZDA at Friendly Pines Camp in beautiful Prescott, AZ.
Because of diabetes camp, as both a camper and counselor, my life has transformed!
I am blown away by some of the following statistics that having your child attend diabetes camp brings:
- 99% of campers are able to perform at least one diabetes management skill independently
- Rotating injection sites increased by 13% (I love this because before camp, I would only let my mom use my arms for injections, and after camp, I used my stomach and legs!)
- Ability to change pump site/sets increased by 16%
- Ability to draw up insulin without assistance increased by 16%
- Recognizing low blood glucose levels increased by 17%
- Gave own injections increased by 9% (I am living proof of this statistic, as mentioned above)
- Understanding insulin to carb ratios increased by 12%
- 42% of the youngest campers increased their knowledge of when to check blood sugar
- 45% of parents and caregivers stated that their family communication improved or significantly improved after their child attended Camp
- 33% increased their confidence to manage their diabetes
- 33% increased their confidence to interact with their peers
- Feelings of anger about having diabetes decreased among 33% of campers
- Feelings of loneliness with having diabetes decreased among 36% of campers
- Feelings of sadness about having diabetes decreased among 31% of campers
In summary, diabetes support groups, online support groups, and diabetes camp all provide a holistic approach to managing the condition. They offer emotional support, practical advice, a sense of belonging, and a community of like-minded individuals who are navigating similar challenges. These groups can play a significant role in improving the overall quality of life for people with diabetes.
Moral of this story, find yourself a good support group!
If you are local in the Phoenix/Scottsdale area, check out: Diabetes Network of Arizona the amazing non-profit group that I am proud to be a part of! With the main goal to serve and support those living with or supporting someone with type 1 diabetes. From donut days and kickball at the park, to game night meet-ups they aim to be inclusive of all ages, inspire and uplift those living with T1D, and redefine what living with chronic illness looks like! Join us!
So, what questions do you have? Do you have anxiety about sharing your diagnosis? What has helped you overcome it? Got any super sweet tips you’d like to share?! Let’s talk about it in the comments!
P.S. If you’re curious which insulin pumps and CGMs I’ve tried and LOVE, check out my blog post review here!
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