Community Table: How to Talk to Your Medical Provider

 

Community Table is presented by the JDRF-Beyond Type 1 Alliance and made possible with support from Abbott Diabetes CareDexcomLillyMannKindMedtronicOmnipodRoche Diabetes Care. and Tandem.


During our fourth Community Table discussion, Beyond Type 1 sat down with a group of experts and community members to discuss how to talk to your medical provider about diabetes, and share helpful resources and perspectives. Watch the discussion in full!

Speakers included:

  • Julia Blanchette, PhD, RN, CDCES, who served as the moderator of this event, has had Type 1 diabetes for 20 years, is a Diabetes Care and Education Specialist at the Cleveland Clinic Diabetes Center.
  • Kyomi Knight, who has Type 1 diabetes, is an actress and advocate in the diabetes community.
  • Jonathan Tijerina, MD, who has had Type 1 since 2005, is the resident physician at Bascom Palmer Eye Institute and is also part of the Bay Area Diabetes support group Carb DM to teach people with diabetes to manage their glucose during endurance exercise.
  • Joy Ashby Cornthwaite, who is a Registered Dietitian Manager at The University of Texas Health Science Center at Houston and blogs online as @diabeteswithjoy.
  • Keith Crear, who has Type 2 diabetes, is a photojournalist who has contributed to the NFL and SportsFusion Live, and active community member.

Partial transcript of the conversation below, edited for content + clarity.

When you were diagnosed, what type of resources were you given?

Keith: I was diagnosed in 2017. How I found out was I passed out at work and I woke up in the ER. They said, “You’re dehydrated, you’ve been working in the sun too long, but your sugar levels is at 300. How long have you been diabetic?” I said, “I’m not diabetic,” and they were like, “Yes you are.”

I went in and saw my PCP and they gave me this outdated pamphlet about diabetes and nutrition. They just handed it to me and said, “Read this over, and we’ll schedule your next appointment.”

For me being diagnosed was traumatic. I kept thinking, “What do I do?” When I saw my first nutritionist, it was the typical 45-minute speech of, “You need to eat this, eat this, don’t eat this, eat less of this, more of this. Bam, bam, bam. Thank you, have a good day.” And they sent me on my way.

JT:  I was feeling sick and my parents were like, “Hey, you’re thirsty, drink as much of these very sugary drinks, either orange juice or Sprite, as you want.” We ended up going on a family trip to Guatemala, and I was throwing up a lot, I passed out a couple of times, and they were like, “Okay, we’ll take you to the doctor.” Went to my PCP. My family and a lot of people from where I’m from have a very rural mindset about seeing physicians, it’s not usually healthcare maintenance, it’s not usually routine, it’s like, “Okay, I’m going to go to the doctor if I’m in real trouble.”

He said he could smell the ketones on my breath, checked my sugar, and diagnosed me. At the time he said, “You got to go to the ED right now.” My mom was an occupational therapist so she was crying a lot and kind of experiencing a little bit of self-blame and she was beating herself up for not recognizing the symptoms. At the time I felt more responsibility for just making sure she was okay and so I didn’t even really process at the time was Type I1diabetes meant. I didn’t know anyone who had it. My dad at the time wasn’t a diabetic, but he later became a Type 2 diabetic, and I have a lot of people in my family who are Type II, but I had no idea what Type I meant.

I had no idea when I left the doctor’s office that I was going to be needing insulin, he didn’t give me any resources. I had no idea that I was going to need some medication for the rest of my life. There were no specialists where I lived, so I would have to drive an hour and a half to see a peds-endo, who was the only endocrinologist in the area.

Has anyone ever helped you advocate for yourself and your health?

Kyomi: No. I got a lot of my information by calling and advocating for myself. That was how I understood how Medicaid works, that was how I understood prior authorizations. I would have been sitting around waiting for technology or at a loss at how to get insulin, otherwise. I had to be as self-reliant as possible and be proactive and ask those questions and constantly call and bug.

Yes, it gets draining; yes, you get tired of advocating for yourself, but you can create a better change in your life if you just do it yourself sometimes. I have not gotten any feedback from any provider that has helped me with anything that had to do with my insurance. It was all by way of me doing it for myself.

Joy:  One of the things I have to say in defense of clinicians, there is so much work to be done with care. What you need to do as a clinician is augment your team. You need to build your team. Coming into where I work right now, I was the first embedded diabetes educator, and I needed a job. My husband was formally military, so everywhere we went, the job may not be there. I would just go and be like, “You need an educator, don’t you?” And they were like, “I think we do.” I was like, “You do, you should make a position.” So, I was begging, they were like, “Well, are you an RN?” I was like, “No, but you do need an RD. You do need an RD.”

They hired me, and going in I said, “This is what needs to be done for people living with diabetes, this is what we need.” Fast forward even years, we have 4 educators, and we will have diabetes-specific insurance verifying. This is life and death for people. It’s your mental health and wellness, it’s that of your family members. You need to sleep at some point, it’s so important that we help you get there so that you can live your best life. You can’t live your best life if you cannot take care of yourself.

How do you maintain a good relationship with your provider + what is a piece of advice a provider has shared with you that has been very helpful?

Keith: My PCP – dumped him. Endocrinologist – dumped him. I really didn’t get any progress with living with diabetes until I met my diabetic specialist, and that’s because she’s living through it and she breaks everything down. To the point where, I still send her pictures of me and my son because I was told that I couldn’t have kids because of diabetes, and she gets ecstatic when I send her those pictures of me and my son. She was like, “I’m so happy you think about me and send this to me,” and I told her, “It’s because of you I had a better understanding going forward after my diagnosis that I was able to get to this point.” I share that with her every opportunity I can.

JT: I’ve had the full spectrum of experiences. Someone from the clinic of my endocrinologist in college, who was not my endocrinologist, someone I’d never met before said some really mean things to me to get me to change my habits in college. I didn’t want to worry about diabetes, I wanted to be a normal kid, I wanted to have fun.

But I wasn’t in a place to hear that message at the time, and I wasn’t in a place to hear that message from someone I didn’t even know, and that really hurt my relationship with that office. I kept going to see them, but I resented having to go, it didn’t feel like a constructive relationship.

I met my current endocrinologist in California, she’s a phenomenal doctor. I think I was really into mountaineering at the time, and I told her I was going to go climb Mount Whitney in California, and she was like, “Okay, how do we prepare for this?” She was the first person to really break things down with me. When she was looking at my data, she didn’t just look at it and say, “You’re doing this wrong.” She said, “Tell me what you think is going on here? It looks like maybe you’re up early and you’re in the hospital, you’re not taking insulin before you eat breakfast. Is that what’s happening?” She met me where I was and that was the best relationship I’ve had with any endocrinologist.

Kyomi: I’ve dealt with a lot of different doctors because I’ve lived in different states. I’ve also dealt with PCPs, endocrinologists, and specialty doctors because I was diagnosed with other chronic conditions as well. I’ve had to talk with a lot of different types of doctors and I’ve also had a lot of hospital stays. My experience has been more misdiagnosis, medical procedure error, medical negligence, or medication errors in a hospital. There was a time where I was extremely bitter, I grew bitter of time.

Now, I’m in a place of wanting to maintain healthy relationships all around in my life, and that’s personal to professional. Listening is big, communication is key. Communication shapes identity and perception, and it helps build trust and establishes rapport. If a doctor can demonstrate concern, that makes all the difference as well about your concerns.

It’s also important for doctors to also ask us specific questions, and not us as patients always being the ones to ask the specific questions to our doctors. Verbal affirmations from a medical provider can go a long way. “You can do this, you’ve got this. I’ve got your back.”