I’ve known of my Type 1 Diabetes diagnosis for several years now. And even after all these years, I’m still learning about my disease and researching it on an almost daily basis. And ever since my stay in the ICU in late 2015, I’ve made it a point to continue to raise my own awareness, as well as that of the people around me so that when another Type 1 comes around, they don’t have to experience the same stigma, prejudice, or judgement that I’ve had to endure (and my case is not unique).
Many times when I tell people I am a Type 1 Diabetic, I am confronted with some very interesting responses and bits of information. Here’s a list of things people have told me (these are paraphrased because I can’t recall exact wording):
Oh, I have a relative that takes Spirulina capsules and they are off all their medications now! I’ll send you a picture of the bottle!
I’m so sorry!
Yea, I mean, all of us are nowadays.
Have you tried Herbalife?
Well that’s what happens when we love good food!
But you’re so young!
I can’t even tell!
That type of diabetes is the curable one right?
That one is probably easier to manage than type 2.
Do you exercise?
Maybe you’re allergic to gluten?
These are just a few things I’ve been told. And although they may be annoying at the time, I try to understand that the majority of the world has no idea what Type 1 is or what it means to manage this diagnosis. My hope with these posts is that people become informed about what Type 1 Diabetes is so that these comments are less common, but also for Type 1’s to have the information available to turn an uncomfortable moment into an educational one.
I’ve received many messages explaining how they have relatives with Type 2 and so they want to know more about Type 1 as well. That always gets me so excited because it shows me that I'm not the only one anxious to learn!
So how can we begin to address the issue of lumping all Diabetics together if we are not first providing the education and raising Type 1 (and Type 2, for that matter) Diabetes awareness?
Something I always remind my friends and followers of is that although I may not be an expert, have the resources to help the Diabetic cause as much as I wish I could, I always try to raise awareness of what a Type 1 life might look like.
A major form of education, inspiration, and awareness are the many Type 1 "Instabloggers" that hide nothing, are comfortable in their own skin, while still showing the good, bad, and ugly sides of their journeys. I shared some amazing Instagram accounts to follow in a previous post (My Type 1 Life: My Diagnosis and Support System) that may help you or someone you care about realize that there is a community out there to provide support!
Many fellow Type 1's on social media are totally open to questions and can be great resources when you're in need of advice or just need perspective from someone who has been in your shoes before. I think especially for younger Type 1's social media can be a great catalyst to launching a lifetime of embracing the challenges, as well as the opportunities that this chronic illness can provide.
Social media is also a great way to find online support groups and pages. I also mentioned this resource previously (My Type 1 Life: My Diagnosis and Support System). These support groups not only provide input from other Type 1's but you can gather information and Type 1 news that you can bring in to your next doctor's appointment for ideas on how best to treat your Type 1 Diabetes.
Type 1 Organizations
Other places to look for educational resources would be organizations that focus on Type 1 Diabetes concerns. I previously listed some organizations and non-profits that you may be interested in checking out (My Type 1 Life: My Diagnosis and Support System). These organizations may provide online or in-person conferences and presentations about topics of interest to the Type 1 community. I know that I found out about a presentation at a local venue once just from looking on the JDRF events calendar.
If you want to focus on finding events or resources close to home, check in with your primary doctor, endocrinologist, or nutritionist to see if they know about anything that could be beneficial.
I was lucky enough to have an incredible nutritionist when I was newly diagnosed. She held classes that focused on how to manage diabetes. The classes were in-depth conversations about things from everyday diet to how to properly check blood sugars.
Again, I'm grateful to have had those in-person classes, but there are many online resources that cover these topics as well.
I would love to recommend books covering the topic of Type 1 Diabetes, but I haven't come across one yet. Unfortunately, many books aren't specific in naming whether they're talking about Type 1 or 2. That makes it a lot harder for me to know if indeed what I'm reading is accurate for my life. So, I'll keep you posted on this part.
Accuracy is Key
Once we begin learning about our Type 1 Diabetes, it is almost an innate feeling to want to spread awareness. So how do we do that effectively? Well, again, social media is awesome! It's free and you can reach hundreds, thousands, maybe even millions! Just be aware of posting accurate information from credible resources. We don't want to confuse people!
Another way to raise awareness is to just be mindful about when situations can be teachable moments. For instance, if I'm wearing my pump on my waistband and someone is staring at it, I'll jump in and say something like, "It's an insulin pump. I know it looks like an iPod, but it has my medicine in it." Sometimes you'll get blank stares or someone who looks like they want to run as far away from you as possible. But for the most part, people will start asking questions.
Now, I advise you to repeatedly mention that you're dealing with Type 1 specifically. It's important to make sure we're as clear as possible when talking about any type of Diabetes. We don't want to perpetuate the belief that Diabetes is one thing. That isn't fair to any Diabetic Type!
Be an Advocate
Another opportunity to raise awareness is when you notice that something isn't right or accurate. A first hand example would be when I noticed a Diabetes awareness campaign around my town that was using scare tactics to get people's attention. Although I couldn't stop the organization, I was able to speak to their entire team, explain my concerns with what they were doing.
Speaking up can be really scary. Especially when you're not the professional or expert in the room. But, it can be the most effective form of awareness.
Other instances where speaking up may be uncomfortable could be when family, friends or even strangers try to provide tips or "cures" for your Type 1 Diabetes. Most of the time the advice comes from a loving place, but it doesn't mean you shouldn't say anything. If your mother-in-law tells you that cinnamon will help you get off of insulin, kindly explain that you are Type 1, you are insulin dependent, and unfortunately that is the only ailment that will treat your disease, but that you appreciate their concern.
As I've said before, you are your own best advocate. So educate yourself constantly. Check out all of the resources you can. And then start small and spread Type 1 Diabetes awareness, even if it's just among your household!
I'd love to know about any resources you recommend to continue to learn about Type 1 or how you raise awareness. Do you have ideas? Let's share! Maybe we can team-up and come up with something new!
Thanks for reading!
-The B of V