If you have diabetes, I’m writing this for you…
If you love someone who has diabetes, I’m writing this for you. And if you are a doctor or a nurse who cares for people with diabetes, I’m writing this for you too.
Diabetes is out of control. Some 30 million Americans have it, and about 40 percent of them are not doing well. That’s 12 million people who are suffering and in poor health from a disease that’s supposed to be manageable.
I grew up with diabetes, and I know that controlling diabetes is a lot more than taking your insulin. That’s the easy part. The hard part is living with diabetes. It’s not easy to get help for that part.
But there is hope, and I’m writing this to share that hope with you.
Ten years ago, I sat on my couch, sobbing, at 3 in the morning. I got out my computer and emailed my doctor: “I’m miserable. I can’t continue like this. It’s just too hard. Please, there has to be someone who I can see who can help me. I cry all the time. Some days I can’t even get out of bed. I feel so alone. I’m so overwhelmed. Is there anyone I can see? A counselor? A psychologist? Anybody? Please, let me know.”
The next morning, I woke up and instantly regretted what I’d done. I couldn’t believe I had emailed my doctor in the middle of the night. I felt I had reached an all-time low.
I was 23, and barely coping.
I was doing everything I was supposed to do. I saw my specialist regularly, and I followed his instructions to the letter. I wanted to control my condition, but nothing I did worked — and I didn’t know why. I gave everything I had to my diabetes and it wasn’t nearly enough.
My blood sugars soared out of control. My kidneys showed signs of disease. I had already had three eye surgeries, yet I was warned that I faced total blindness within a year.
I was supposed to have my whole life ahead of me. Instead, I was afraid I wouldn’t live to see 30. And I thought that I had brought this upon myself, through my own failure and incompetence.
So after yet another emotional breakdown, I reached out and I sent that email. I felt so ashamed.
I needn’t have bothered.
My doctor never replied. He never called. And when I went in for my appointment a couple of months later, he never brought it up.
Instead, he told me what he always told me: “Your control is even worse. You need to check your blood sugar more. Eat better. Take your insulin more regularly. Exercise. If not, you’ll end up blind, on dialysis, and very sick. See you back in three months.”
I was mortified. This was supposed to be helpful? But I didn’t challenge him.
Instead, I did some research.
I found out that diabetes distress is common, and that people with diabetes are more likely to suffer from depression. I also read a report from the Type 1 Diabetes Exchange that said that only 14 percent of young adults with Type 1 diabetes have their blood sugars under control. That meant that 86 percent were just like me.
I wasn’t crazy! And if people with diabetes are more likely to suffer from depression, why did no one ever ask me if I felt depressed?
All my life, I thought I was a screw-up. I didn’t know that other people with diabetes had these same struggles. I didn’t know I was actually normal.
Years’ worth of guilt, shame, and self-loathing suddenly disappeared.
Then I got mad. What kind of a system was this anyway? How could anyone call what I had experienced my whole life “health care”?
I decided to become a nurse and a diabetes educator so that I could tell my patients what nobody had ever told me: that they were not alone in their struggles.
But it turned out that wasn’t the answer either — not at first.
After graduating from nursing school, I got a job working in a clinic. It was supposed to be the job I always wanted. Instead, I became part of the system I wanted to change.
Just like me, patients who couldn’t keep their diabetes under control were lectured for being non-compliant. Their doctors regarded them as hopeless cases who didn’t care about their health and who were wasting their time.
My patients were being treated the same way I had been. Everything — my life, my career — felt like a lost cause.
OK, here’s where the hope comes in.
I heard about something called “Endo ECHO.” And I saw that things could change.
Endo ECHO is a different way of managing diabetes. In fact, Endo ECHO is less about managing diabetes and more about helping people with diabetes live their lives the way they want to.
Think about that for a moment. Imagine your doctor asking you about your life, not your disease. What’s going on with you? What are your goals? How can we help you achieve those goals?
Also, imagine that this doctor is not a specialist in some faraway place, but a doctor in your own community. The town where I grew up — Cloudcroft, New Mexico — was a five-hour trip from the specialist I needed to see in Albuquerque. Every three months, my parents and I got up before the crack of dawn to make that five-hour drive for my doctor’s appointment, and then return home that same day.
If I’d had Endo ECHO as a kid, we wouldn’t have had to do that. The specialized care management I needed would have been available to me right in Cloudcroft, from my primary care provider.
You may be asking: How is this possible? That’s not how diabetes care works!
True, it’s not, in most places. In fact, right now, Endo ECHO is only in a few states, including New Mexico, but it is my passionate hope that this approach to diabetes care will spread across the country.
Full disclosure: I am now the nurse manager for the Endo ECHO team that’s part of Project ECHO at the University of New Mexico Health Sciences Center in Albuquerque. We work with providers at ten health centers across the state, helping them become experts in diabetes management.
THIS, it turns out, is my dream job. THIS is how I’m making the difference I always wanted to make for people like me who have diabetes.
Here’s how it works.
Normally in health care, you see a primary care clinician for preventive services and everyday health problems. But when you need specialized care, you have to see a specialist. And because of a nationwide shortage of specialists, the type of specialist you need to see may not be available in your community. You might have to travel very far, like I did.
And if you need to see not just one but many specialists, because the condition you have is so complex, and they are all located in different places and you need to make all these different appointments — well, life can get very complicated. You might decide that it’s not worth seeing all those different doctors.
Endo ECHO makes things much simpler. You see one primary care clinician — a doctor, nurse practitioner or a physician’s assistant usually — who has been specially trained in diabetes AND works as part of a team of doctors and other specialists who essentially are co-managing your care.
Working with this specialist team, primary care clinicians learn how to use the latest and most effective diabetes technologies. They also learn how to address the psychological and social-emotional aspects of diabetes, which is very important.
For people with diabetes, this is a huge breakthrough.
Not only do you have a regular provider in your community who manages your care, but that care is informed by a range of professionals, including a diabetes specialist, a psychiatrist, a social worker, and a pharmacist.
If you had to get referrals and appointments for each of those professionals separately, it probably would take months. Instead, all that knowledge and experience are incorporated into your treatment plan up front. Endo ECHO is like a fast-forward button.
In addition, in New Mexico, you are teamed with a community health worker who serves as your advocate, liaison, and general problem-solver, helping you both manage your diabetes and overcome the obstacles in your everyday life.
So, with Endo ECHO, you’re getting diabetes care, mental health care, and social support — all in one place.
In Endo ECHO, we are able to take a truly holistic approach to treating patients with diabetes because all the pieces of the puzzle are right there. Sure, we talk about things like insulin and lab results, but we also talk about our patients’ overall well-being, their mental health, and their quality of life.
And we talk about problems that would throw a wrench in anyone’s life — problems like losing a job, going through a divorce, having to care for a sick parent. Because those kinds of problems affect diabetes, too.
Life isn’t just about having perfect blood-sugar levels — it’s about living the life you want, healthily. Your diabetes care should be built around your life, not the other way around.
Being a patient in Endo ECHO is life-changing. It’s the care I wish I had gotten.
Right now, Endo ECHO is only in a few states. However, we are seeking partners at medical centers around the country to spread this approach to diabetes care, so that many more people with diabetes can benefit.
If you want to learn more about Endo ECHO — or if you would like your doctor to learn more about Endo ECHO — please email the Endo ECHO team at EndoECHO@unm.salud.edu or Project ECHO at ECHOreplication@salud.unm.edu.
You can also watch this video to see Endo ECHO in action.
