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Since being diagnosed with diabetes, I've had a very difficult time, and most of that confusion has come from my interactions with healthcare professionals.
Like the people who said when I was first diagnosed in 2016 that I should never have had this diagnosis, that I was destroying my body.
Or people who didn’t listen when I kept saying, “I think something else is wrong,” and accused me of lying about what I was doing to take care of my health.
Despite pulling data from MyFitnessPal and continuous glucose monitors, doing my due diligence, studying, digging deep, and trying to understand my body and its unique needs, healthcare providers still looked me in the eye and insisted I wasn’t trying hard enough.
I was lucky to find an amazing endocrinologist who was supportive, understood my concerns, listened to me, and was willing to try new things with me.
He also noticed that I liked getting an education and would explore my options before moving forward.
I have suffered from high blood sugar at night for over 9 months with no improvement. I have tried increasing my medication little by little, changing the timing of when I take my medication, etc. This has resulted in my blood sugar being in range at all times being thrown off and it is frustrating to wake up with high blood sugar every morning even if I sleep within range.
So when we discussed pumps, he told me that consulting with CDCES would be a good idea because you would have plenty of time to discuss your options and you would be able to see and feel them before deciding on one (because with some pumps, that would be a decision for you).
Your patients are setting goals for the time they want to spend with you, so why not listen?
It took about 60 days to get an appointment and I was really looking forward to being able to take the time to discuss different options, but the appointment unfolded completely opposite to how I thought it would.
The purpose of my visit was to talk about insulin pumps, and I began the conversation by saying, “I’m here to talk to you about insulin pump options and how they work.”
The provider wasn't listening.
Instead, I spent 44 minutes being lectured about plate sizes and portion sizes, adding strength training to my exercise routine, and eating only protein and vegetables.
I asked about my insulin pump and she asked about my diet and exercise habits.
Although it's conveniently not stated in my medical records, she said that taking Ozempic is supposed to mimic the effects of bariatric surgery (uh… I'm sure you all know I've explained in great detail how Ozempic works in the body). 2 videos It has been viewed over 1 million times. And it turns out that to keep your blood sugar properly balanced and use Ozempic “correctly,” you need to eat about 800 calories a day.
She also assured me that I wouldn't die, that it was okay to eat that much, and that although other people might be concerned when they saw me eat two bites, I would just have to explain.
She was encouraging behavior that I considered to be an eating disorder, and honestly, I wanted to see my face.
I'm usually pretty good at hiding my dissatisfaction, but I was very upset. I also want you to know that this appointment did not accomplish the goals I had made clear at the beginning. I went in asking to talk about my insulin pump first.
She decided for herself what we would talk about, leaving the pumps as a footnote.
There were other things that bothered me.
She reiterated that for the purposes of our appointment and my high insulin resistance, she was going to classify me as type 2, so the goal would be to reduce my insulin intake.
I corrected her several times and told her that I am extremely insulin resistant, my C-peptide shows low insulin production, but I also test positive for LADA antibodies. That's what's in my chart.
This means that even though my body produces some insulin, it continues to attack and destroy the beta cells in my pancreas.
By the end of the appointment, I expressed frustration that I had not been explained the pump options, and the last thing I was told was to check my insurance and make my selection online.
That is why I came to you, ma'am.
I wanted to explore those options with an expert.
As patients, we are sometimes tired and just want support and understanding, that's why we came to you.
CDCES is supposed to take a patient-centered approach.
This was not personalized diabetes education. I did not get what I wanted and left with unfulfilled goals.
I paid to be there, my reservation time should be focused on what's important to me.
But what I got out of it was to eat less and exercise more. If it bothers you so much, turn your high alarm up to 300. If it's too hard, stop checking your blood sugar so often. 800 calories a day is enough and you won't die. And cut back on your insulin. If you keep taking insulin you'll just get fatter and fatter.
These are not solutions to my immediate problem, nor is it the advice I was looking for.
The price backlash was the final straw.
Finally, what frustrated me was how much resistance I received regarding the price of the pump.
Insulin pumps are expensive. They can cost anywhere from $500 to $5,000 without accessories. They may not be covered by insurance. They may require a commitment. I knew that when I went to the doctor. Price is a factor for me, but it doesn't deter me. I'm willing to sacrifice.
And it really pisses me off when patients ask for something that they believe will improve their health and healthcare providers are quick to resist and try to create obstacles.
Don’t put up barriers between me and what I want and don’t use price as a justification.
I fight diabetes every day and I know how costly it is. But if it's for my health, I'll find a way. The price won't stop me from getting what I want.
And please don’t assume I don’t have the resources to make it happen.
But my endocrinologist referred me here to talk about pumps. I didn't come up with this on my own. This has been a years-long conversation. I should not have been resisted and redirected into a conversation I didn't ask for.
“Pumps are expensive.”
Yes, I understand.
“It doesn't happen instantly. It's a process. It takes practice and fine-tuning.”
Yes, I know. And that's okay. Can we talk about options?
“Find out what your insurance will cover and choose your policy online.”
What.
I don't know if this is a typical experience of seeing a diabetes care and education specialist, and I sincerely hope it isn't.
Although I learned one thing from this appointment (strength training may help me reach my goals), I felt that my experience, my needs, what I wanted to accomplish, and what I had hoped for was not met by this appointment.
I'm not going to follow up. I've received a lot of love and cries for help in the meantime. But it just reminds me again of why I distrust the health care system in the first place, and why I feel so anxious about meeting new health care providers.
I go into every hospital expecting to be supported, but instead I push my experience aside, thinking, “This person will treat me with dignity and respect.”
I should have learned by now that dignity and respect are not a given when living with a chronic illness.
And that's a shame, because oftentimes we seek out these conversations because we want to do better. We take time off work and we study.
We come prepared with questions, ready to do whatever it takes to help us do our best, and when we ask for something, please listen and address our concerns.
We are committed to that process.
In the end, this is the advice I received about the pump, and I know no more about these options than I did when I went to my diabetes educator's office.
If I had known the advice was to check with my insurance company and research it myself online, I would have saved myself $40 and a lot of head space.
And that $40 probably went towards future pump consumables.
