Insulin Improved My Quality of Life
Attorney, copywriter and Beyond Type 2 community member, Alex Charnin, shares her personal journey of starting insulin for the first time, including switching doctors to do so after one of them put too much emphasis on her weight and not on her blood glucose levels, and how insulin improved her quality of life. If you’re nervous about starting insulin, let Alex’s story convince you that to see insulin therapy in a positive light and start having those conversations with your doctor. This interview has been condensed and edited but gain more insight into Alex’s story by checking out the full-length discussion with Alex in the video below.
When were you diagnosed with type 2 diabetes and what was your reaction to your diagnosis?
I got diagnosed at 19 with prediabetes and then kind of sent back off into the world to figure it out myself. It was terrifying because the first thing they said, which is a fallacy is, “Well, you’ll go blind if you don’t fix this soon or you’ll lose your foot,” my great grandfather had type 2 and he lost a toe, so that was very scary. It didn’t do anything. I spent three weeks not eating carbohydrates or trying not to eat carbohydrates and feeling bad when I did, and taking metformin, and it just progressed from there. It was scary, but it’s never been scary enough.
When were you prescribed insulin for the first time?
I’m going to be 35 soon and I just got insulin two months ago. I took metformin exclusively for seven years. Then I started running and I was able to control my blood sugars by running and eating a little bit better, so I got off it for six years. I don’t know if I actually should have been off it full time, but I stayed off it because a lot of people can’t get low blood triggers on the metformin, but I did a lot. It’s supposed to protect you from low blood sugars, but I would consistently have sugar levels in the 50s or 60s and it was really uncomfortable so I took myself off.
What types of education did you receive around low blood sugar from your doctor? Did you receive any?
Nothing. I lived in Boston when I was between 23 and 30. I got to go to the Joslin Clinic in Boston around that time, and I had meetings with a nutritionist but the line of information I was given was so different from what I’d grown up with. My parents were very into exercise and nutrition. The nutritionist wanted me to have 30 to 40 carbs at each meal and then 15 carbs in between. I grew up thinking that carbohydrates were bad so I would not do what she said, and then at the end of the day, be starving or having low blood sugar and eat 200 carbs in one sitting. I didn’t get enough help the way that I needed help, but also I didn’t listen very well. It really wasn’t until this past year in April 2021 that I finally started to dig deep and figure out what was going on and how to live like a diabetic.
What were your misconceptions or existing thoughts about medications especially insulin and type 2 diabetes? What had you heard from other people? Did you have a community of type 2 that you could confide in over the last decade?
No, not at all. The people that I knew that had type 2 were older. My grandfather has it. I have a lot of cousins with type 1, and now I know I have a lot of cousins with latent autoimmune diabetes in adults (LADA), which I didn’t know that they had LADA. In my family, if you had type 1, you just went about your business and took insulin. If you had type 2, you ate salads, basically had an eating disorder, you talked about food a ton and why you couldn’t have things. Recently, I had a conversation with my grandma about being on insulin and she was like, “I can’t believe you’re on insulin. My friends just eat salads to control their blood sugar. Can’t you just do that?”, and I had to be like, “Well, why should I have to live the rest of my life just eating a salad when there’s medication to help?” In my family, we’ve all had a lot of education in the last few months on why it’s okay to be on insulin, but my family was very much against it.
Who initiated the conversation to start insulin? Is this something that you knew was going to be an eventual reality or did your doctor suggest it at an appointment?
I had to push for it. In January of 2021, I’d always been able to take my metformin and my sugars were okay, but I didn’t check enough, I felt fine so I didn’t check. I had a hand injury and I had to have surgery, and I think that trauma, because it’s all hormonal, kicked my diabetes into a higher gear. In April 2021, I had a carb-heavy brunch and I fell asleep, and I was like, “Well, that’s not normal.” I checked my blood sugar and it was 220 mg/dL, which is the highest number I’d ever seen. A girl on Instagram was posting about her continuous glucose monitor (CGM) and offered an extra to me so I could track my glucose and show my doctor.
When you started wearing a CGM, what information did you learn that inspired you to go talk to your doctor about insulin?
I got to see more of how fat and protein affect your blood sugar, how just simple carbs, how I could eat a bagel and it wouldn’t necessarily affect me as severely as syrup, but I went to speak to a new endocrinologist last summer and I asked him about it and he said, “No, because it’ll make you gain weight,” and then told me to just stick with metformin. He gave me Tradjenta samples and Vascepa, which is a triglyceride medicine, and had concocted the schedule where if I was running, I didn’t take the Tradjenta but I would take the Vascepa, and then my sugars would be fine, but I still wasn’t able to run in the morning, and I live in Florida so it’s kind of important because I would wake up and my blood sugars would be 180. He was very focused on weight and didn’t really offer any other options other than weight loss surgery. Then towards the end of the summer, he offered Ozempic so I did take that for four months and that was the worst experience of my life.
The first time in my life that I learned there’s a nutritionist and I can’t think of her name on Instagram specifically for type 2, and she talks about how, even if they put so much emphasis on losing weight when you type 2, but it doesn’t necessarily mean that your blood sugars will be better. Weight doesn’t always equal better blood sugar. That blew my mind because that’s been the main narrative.
It’s also presumptuous to assume that a person wants to lose weight. I think in this case, we think of weight from an aesthetic point of view and not really asking someone about how they feel about themselves and their bodies at that point, and if weight loss is even a goal for them, does that sound about right to you? Is that how you felt?
Yeah. I think everybody struggles with wanting to lose weight to maybe. For me, I’d love to lose weight to get faster at running, or I’d love to change my body so that I have bigger muscles, and then there’s the diet culture brain that’s like, “Oh, I’d love for my double chin to go away,” and all that stuff, but at the end of the day, I’m a happy person, I am married to somebody who’s a happy person, and it’s not the main focus. I think that bothers people who may be smaller and it’s their focus, and it’s like, “Well, I’m smaller and this is my main focus, and you have diabetes so this should also be your main focus.”
I think that goes hand in hand with the insulin stigma. Even just in the diabetes community, there’s insulin stigma with type 2. I’ve seen people post like, “Oh, insulin’s so expensive because type 2 people need it.” My pancreas doesn’t work, either. It just doesn’t work the same way yours doesn’t work.
I’ve seen people say, “you should just lose weight, and then you won’t need insulin.” No. Yeah, that’s not true. There are tons of people who lose weight but still need insulin need. I think there are a lot of stigmas, and there’s a lot of stigma in people who have type 2 saying, “Oh, I got it from eating too much sugar.” No, you didn’t. Even, when I got diagnosed, I had just gone away to college for three months and I gained 30 pounds in three months. I also got diagnosed with polycystic ovarian syndrome (PCOS) the same day and the people around me made me feel like I got type 2 diabetes because I was finally in control of what I was eating after living at home for so long. It took until six months ago to realize, “Hey, I didn’t get diabetes from three months of emotional eating or being able to eat whatever I wanted to eat in my food at all.”
My diagnosis was 15 years ago, and it took that long for me to arrive at that conclusion. Me, personally, I have a lot of trauma to work through around diabetes and the stigma, and that’s part of what I talk about a lot on my platform, and it’s been helpful.
When you were able to convince your doctor to prescribe it to you and what type of insulin were you initially put on?
I fired that endocrinologist for other reasons. We had a fertility conversation when I got off Ozempic because we were trying to have a baby, and he was bothered that I got off Ozempic and just wanted me to suffer through the side effects, and then told me basically that if I had a baby, it was going to have special needs because I’m 35, and because I’m overweight, I wouldn’t be able to have a baby. Just because you’re overweight doesn’t mean that you have fertility issues. I left his practice and I found another doctor who is wonderful. I cried in his office the first day because I went in with my bullet points and my armor. I wanted to be on long-acting insulin because I have, I can never remember how to pronounce it, but I have this Somogyi effect, so overnight my liver just starts to throw out.
With my new doctor, at our first meeting, he agreed to put me on insulin and helped me decide which one was best for me. I started crying and when he asked why, I told him it was because he was the person to say yes and not ask me why I’m not eating more salads.
He put me on Tresiba overnight, and I’ve been on that since March 9th and I love it. It’s helped my overnight blood sugars so much. Then in April, I went back to check up about the Tresiba and I was like, “Listen, can we talk about rapid-acting insulin? Because I have a husband and sometimes we like pizza,” and he was like, “Pizza’s delicious. Of course, you should be able to have pizza.”
He was willing to experiment with me and said I could try whatever I felt would help. I feel much better and like I can live my life.
Long-acting insulin can be a game-changer for people with type 2. What are some words of inspiration you have for people with type 2 who are nervous about starting insulin, and also those who want to start insulin but are nervous about having these conversations with their doctor?
Just do it. Just ask because if they say no, they’re not the right doctor for you, and if they say yes, your life can change. I think making sure that you have real care and people who want to help rather than people who are just there to collect a copay and tell you not necessarily what you want to hear but what they want to hear and always giving you something to work on. You shouldn’t have to spend your whole life trying to fix a disease that’s going to be with you for your whole life. There are fixes that they can give you and they should, and if they don’t and you still want it, I would try to get a second opinion.
It’s changed my life, so I hope that other people take a chance and let it change theirs.