I’ve had a rough time in my diabetes diagnosis. Most of the turbulence has come from my interactions with healthcare providers.
Like the one who told me when I was first diagnosed in 2016 that I shouldn’t have this diagnosis, and I’m ruining my body.
Or the ones who failed to listen when I kept saying “I think something else is wrong,” only to be accused of lying about what I was doing to manage my health.
Despite bringing in data from MyFitnessPal, and my continuous glucose monitor, and doing my due diligence, studying, diving deep, and working to understand my body and its unique needs, care providers would still look me in the face and I wasn’t working hard enough.
I got lucky, and I found an amazing endocrinologist who is supportive, understands my concerns, hears me out, and is willing to try new things with me.
He’s also caught on to the fact that I like to be educated, and weigh my options before moving forward.
I’ve been struggling with overnight high blood sugars for more than 9 months, and it hasn’t gotten better. We’ve tried slowly increase my medications, different medication timings. It’s throwing off my Time In Range, and it’s frustrating to wake up every single morning with high blood sugar even when I go to sleep in range.
So when we had the conversation about pumps, he let me know that talking to a CDCES was a good path forward because we could spend much more time discussing options, and I could see them and feel them before deciding to commit to one (because for some pumps, it is a commitment).
When a patient establishes a goal for your time together, why aren’t you listening?
It took about 60 days to get my appointment, and so I was really excited to have the time, and talk through options, but the appointment went the exact opposite of how I thought it would go.
The entire purpose of my visit was to talk about insulin pumps. I initiated the conversation by saying “I’m here to talk about options for insulin pumps, and how they work.”
The provider didn’t listen.
Instead, I spent 44 minutes getting lectured about the size of my plates and portions, adding strength training to my exercise routine and and eating only protein and veggies.
I asked about insulin pumps, she asked me about my diet and exercise habits.
Conveniently, it’s left out of the chart notes, but she told me that being on Ozempic is supposed to mimic the effects of bariatric surgery (eh…we all know I’ve gone way into depth on how Ozempic works in the body – so much so that I have two videos with over 1M views about it). And that I should be eating around 800 calories a day if I want to keep my blood sugars balanced properly and using Ozempic “correctly.”
She also assured me I wouldn’t die. I would be ok to eat that little. That other people might see me take two bites of food and be concerned, but I could just explain it to them.
She encouraged what I consider disordered eating behaviors. I honestly wish I could see the look on my own face.
I’m usually pretty good at hiding my displeasure, but I was so upset. I also want you to see how the appointment didn’t accomplish the goal I was clear about in the beginning. I walked in asking to talk about insulin pumps first.
She took it upon herself to decide what we would talk about, and left pumps as a footnote.
There were other things that bugged me, too.
She kept saying that for the purposes of our meeting and my high insulin resistance, we would consider me type 2, so the goal was to reduce my insulin intake.
I corrected her several times, and told her that while I am incredibly insulin resistant, and my c-peptide shows low insulin production, I’m also antibody positive with LADA. It’s there, in my chart.
This means that even though my body may produce some insulin, it is still attacking and destroying the beta cells in my pancreas.
By the end of the appointment, I’d voiced my frustration that we didn’t go through pump options. The last thing I was told? Check your insurance and go online to pick one.
Ma’am, that’s what I came to you for.
I wanted to explore those options with someone who is an expert.
As patients, sometimes we’re tired, and we just want support, understanding. That’s why we came to you.
A CDCES is supposed to take a patient-centered approach.
This wasn’t individualized diabetes education. I didn’t get what I asked for, and I left without accomplishing my goal.
I paid to be there. My appointment time should be focused on what’s important to me.
But what I got was eat less, and exercise more. Turn your high alarms up to 300 if they’re bothering you so much. Stop checking your blood sugars so much if it’s too overwhelming. 800 calories a day is adequate and you won’t die. And take less insulin, because if you keep taking it, It’s going to make you bigger and bigger.
These aren’t solutions to my immediate problem, nor was it the advice I asked for.
Price Pushback Was My Final Straw
The last thing, that frustrated me was how much pushback I got regarding the price of pumps.
Insulin pumps are expensive. They can run from $500 to $5,000 without the supplies. They can sometimes not be covered by insurance. They can be a commitment. I knew that walking into the appointment. While price is a factor for me, it’s not going to deter me. I’ll sacrifice
And I’m really annoyed that providers immediately push back, and put up roadblocks when a patient is asking for something that we believe will make our health better.
Please don’t create a barrier between me and what I’m asking for and use price as a justification.
I live with diabetes every day. I know how expensive it can be. But, if it’s for my health, I will find a way. Price is not a reason to talk me out of having the thing I’m asking for.
And don’t assume I don’t have the resources to make it happen.
But also, my endo referred me here, to talk about pumps. I didn’t just come up with this on my own. This has been a conversation for a couple of years. I shouldn’t have gotten pushback, and redirected into a conversation that I did not ask to have.
“Pumps are expensive.”
Yeah, I know.
“You won’t get get on one fast, it’s a process. It takes training and fine tuning.”
Yeah I know, I’m fine with that can we talk about my options?
“Check what’s covered by insurance and then go online and pick one.”
What the fuck.
I don’t know if this is the typical experience of seeing a Diabetes Care and Education Specialist. I sure hope it’s not.
While I took one thing away from my appointment (strength training may be helpful with my goals), the feeling I had was that my experience, my asks, what I cam to accomplish, and what I wanted were not met in that appointment.
I don’t plan to follow up. In the meantime, I got so much love and outreach for help. But it reminds me again of why I have such a mistrust in the healthcare system in the first place, and why I have such anxiety about seeing new providers.
I walk in every time thinking I’ll be supported, and instead. I put my experiences aside because I’m like “this person will treat me with dignity and respect.”
I should have learned by now that dignity and respect when you are living with a chronic illness are not a norm.
That’s unfortunate. Because many times we seek out these conversations because we want to do better. We take time off from work. We research.
We come prepared with questions. We’re ready to do what it takes to make sure we can do our best. And when we’re asking for something, you should be listening and addressing our concerns.
We are committed to the process.
In the end, this is the advice I got about pumps. I don’t know anymore about these options than when I walked into the diabetes educator’s office.
I could’ve saved $40 and a lot of brainspace, if I knew the advice was going to be check with insurance and go online and research it yourself.
And that $40 could’ve probably gone to my future pump supplies.
One Response
Mila, first I am so sorry you had that awful experience with a health care provider. Honestly, that visit is textbook “what not to do or say” to a patient in my mind as someone who works in healthcare. I’m a pharmacist who works with patients on diabetes management in a primary clinic and it honestly makes me so angry seeing how this provider treated you. The fact that she completely disregarded your needs/what you wanted to discuss at the visit but also how blatantly incorrect she is about what I consider some fairly basic diabetes knowledge. There’s absolutely no caloric maximum with glp1s and like you mentioned it’s disturbing how those comments can trigger disordered eating behaviors. Also, her idea that glp1s are equivalent to bariatric surgery is wild. And finally, her idea that insulin is not ideal for those insulin resistant is so wrong! It’s the exact opposite, where we discuss to our patients who are very insulin resistant that insulin will be the most effective and rapid way to lower glucose. Finally, I’m really sad that she wanted to try to scare you about insulin and it’s use as if higher doses are dangerous. It’s not and it’s disheartening that patients who need this therapy like insulin through a pump or pen are being sidestepped and pushed to “work on lifestyle changes” while the patients elevated blood sugar remains out of range and then pushes them to needing insulin even more plus the risks for complications of hyperglycemia over time. This all makes me so sad. I hate that you went through that. I’m glad you are using your platform so others going through the same feel less alone. You’re reminding me as a health care provider how important it is to LISTEN to our patients and let them be in the driver’s seat. Sending all the best.