This content originally appeared on Beyond Type 1. Republished with permission.
By Liz Cambron-Kopco, PhD
An essential tool for managing diabetes is insulin therapy. With several different types of insulin and delivery methods, insulin therapy can be highly personalized. Despite the benefits of insulin for diabetes management, many people have reservations about getting started with injections.
A Beyond Type 1 content manager, Liz Cambron-Kopco, sat down with diabetes community members, Damaris Palacios and Rachel Lalonde, to talk about insulin injection and self-administration fears and the false, negative perceptions about the role of insulin therapy in diabetes management.
The transcript below has been edited for length and clarity.
BT1: We want to talk to community members about the fear behind insulin and insulin injections. Tell us a little bit about yourself, where you are, what type of diabetes you have, when you were diagnosed, and whether you take insulin.
Damaris: My name is Damaris. I’m living in Houston, Texas. I was diagnosed when I was 11, close to 12, and right now, I’m on Lantus and Fiasp. I have type 1 diabetes, and I was diagnosed in 2005.
Rachel: I am Rachel, and I am in Baton Rouge, Louisiana. I have an interesting diagnosis story because I was originally diagnosed as a type 2 diabetic and later discovered that I’m actually latent autoimmune diabetes in adults, LADA. When I started taking insulin, that was a big shift for me. I currently take insulin with a Tandem diabetes pump, the t:slim, and I use Fiasp with that.
I’m excited to have two different perspectives share their side of the story here. What was your impression of insulin before you started using it?
Rachel: I was diagnosed with type 2 in my twenties. When I was 30, we found out it was LADA. I started taking insulin before we figured that out, and up until that point, the only conversations that happened around insulin with type 2 diabetes was that it was a last resort if you’re failing.
It was seen as a failure of control. It was just like—you don’t want to have to go on insulin because that’s the last thing. My perspective is very different now, but it was never presented as a tool that could be used. It was always presented as an end result of not being good enough.
Is that the same perspective in the type one community?
Damaris: In a sense, it is, just not as far as taking [insulin], but the amount that you’re taking, because there’s always that resistance. It’s like, “What’s your insulin to carb ratio?” That makes you see if you’re getting any better or if your management is perhaps getting worse, or if other factors such as weight gain can impact how much insulin you’re taking.
I didn’t even know what insulin was before I was diagnosed. I mean, I’m Mexican-American, so type 2 is very common. As far as type 1 diabetes, it didn’t run in my family. I just remember them coming with the little vials while I was in the hospital at my diagnosis. It’s like, “you’re going to mix these.” And I’m just like, “What is that?”
It was a lot to take in because my parents are immigrants. So them having to understand everything and me trying to process everything while translating and figuring it out was a lot.
As a kid, you’re like, “Wait…this will go on forever? Is there a time that I can just turn it off? What does this mean for the future?”
Did you fear when you were finally told, “Okay, this is something you’ll have to take?” How did you handle having to take insulin?
Rachel: I started insulin with a pen on Lantus, and I think NovoLog. When I got pregnant, and suddenly, my fasting blood sugar was in the two to three hundred [range]. They were extremely high. My endocrinologist started me on insulin immediately, and it was just the pens, and those were easy. That was not scary at all for me.
But when I switched to maternal-fetal medicine for the care because I was pregnant, they switched me to vials with syringes. Something about just looking at the syringe was so terrifying for me. I had always been afraid of needles, and pen needles didn’t really count as needles in my brain because they’re so small.
When I had to use syringes, it was three times the size. I cried for hours before I did my first injection. Yeah, I was a grown woman, and I was terrified.
That’s valid. A lot of people are scared of needles. My mom used needles and syringes, and vials for insulin. When I saw the syringe, I got flashbacks to the DARE program, like, “Don’t do drugs,” and they would show us pictures of it. Many people have never seen a syringe. Do you remember what you felt like when you had to start injecting insulin?
Damaris: Funny enough, my older sister used to work as an assistant in a clinic. She was used to needles and giving flu shots. She was very helpful. She would give me a couple of my shots, which would hurt the most because some insulins sting a bit more.
Slowly but surely, I stopped depending on her so much. I was still her baby sister, so she was doing it out of love, and I’m always grateful for that. I’m glad I could slowly take off the training wheels because it’s a bit overwhelming whenever you think of injections as a daily requirement.
I tried the pump for a while, but something about just having control of the insulin and how much you administer and seeing it, the syringe, made me more confident and more comfortable after a while of trying both.
Rachel: When I first used a pen with a pen needle, I had some apprehension, but nothing like seeing the syringe. I cried for hours and hours and hours until my husband got home from work.
He held my hand while I gave myself the shot. I think [I felt] the motivation in knowing that I was pregnant and the child inside of me needed me to do this helped a lot. But I mean, even that wasn’t enough for me to be like, “Okay, this is fine.”
It’s almost like exposure therapy. Once you do it so many times, it’s just like this thing I do. Like any new skill you would learn, it has a learning curve.
I had done it so many times that it was just second nature. Especially because while I was pregnant, I was on a very aggressive insulin regimen. It was a lot of injections every day. I think this sheer amount of them just was like, “Okay, I’ve done it X amount of times, and nothing bad has happened yet.”
What advice do you have for someone who is afraid of starting insulin therapy?
Rachel: I would say the biggest thing for someone who’s just been diagnosed is— regardless of what type [of diabetes] they have— explaining to them that insulin is just a tool. Having to use insulin or not use insulin is not a reflection of your morality—whether or not you’re a good or bad person. It’s just another tool available to us, and thank God because it’s amazing!
So many people with gestational diabetes talk about how they “failed” the glucose tolerance test. You didn’t fail anything.
My biggest piece of advice to anyone who’s starting insulin is that it’s going to be scary, and it’s going to suck, but then it’s going to get better. It’s just a tool. It’s not a failure if you’re on insulin.
Damaris: I think it’s important to realize it’s my human body needing something. I shouldn’t feel any shame for that. It’s just an extra task that has to be done to maintain good blood sugars. If you’re newly diagnosed, I would say maybe try injections. I remember there were a few friends that told me that whenever they were first meeting their diabetes educator, they would practice on fruit and things like that.
It’s like your skin, so you can get a feel for how much to push down or how it feels physically in your hand. And if you absolutely can’t do injections, try a pump. Obviously, it’s not always the easiest thing with accessibility and affordability, but as long as you’re getting your insulin and what you need for your management in some way or another, that’s what matters.
Thank you for sharing your story with our community, ladies!
Read more about diabetes community, fear, insulin, insulin injection, insulin pump, Intensive management, Lantus, NovoLog, Tandem.