Originally published Sept. 26, 2018.
Today for the latest in our series of interviews with our 2018 DiabetesMine Patient Voices Contest winners, we’re talking with T2D advocate Phyllisa Deroze. She’s an American from Pompano Beach, Florida currently living overseas in the United Arab Emirates, working as a literature professor.
After a dramatic diagnosis in 2011, “Dr. P” (as she’s often known online) quickly found the Diabetes Online Community and has become a voice for many of the underserved. She created the Black Diabetic Info site and uses social media to share her story, raise her voice and push back against stigma and a lack of diversity and inclusion.
Here’s what she tells us about all of that, along with her thoughts on how to better empower more people with type 2 diabetes.
DM) First, can you tell us how diabetes came into your own life?
PD) I was diagnosed with type 2 diabetes on February 15, 2011. Initially, I was misdiagnosed with an electrolyte imbalance and told “drink Gatorade.” After a week of drinking sugary drinks, my symptoms of extreme thirst, frequent urination, and blurred vision had exacerbated, and I passed out in my bathtub. When I was correctly diagnosed with diabetes in an emergency room in Fayetteville, North Carolina, my blood sugar was 593. I don’t have a family history of diabetes.
Wow, what a horrible experience… Did you go back at all to the original hospital where you’d been misdiagnosed to let them know it was T2D?
I NEVER went back to that place. Mainly because when I thought about what I would say or what my reaction would be, anger just filled in the gaps and I thought it wise to not put myself in the position of facing the person who is responsible for nearly causing my death. I was only drinking water before she told me to drink Gatorade. I can only pray that it won’t happen again to someone else.
Have you heard of any other misdiagnosis stories like yours?
I haven’t heard a story like that, but I have heard of misdiagnoses of various kinds. It’s sad because when you read things like “50% of people living with T2 don’t know it,” the reality is that many don’t know it because their clinical team doesn’t know. I shouldn’t have left my doctor’s office without having my blood sugar checked the first visit, especially after informing her of my symptoms. So, we can’t put all the blame on the people with diabetes for not knowing. Overall, I heard a few stories about people being misdiagnosed with T2 but they have T1.5 (LADA), and others misdiagnosed with any type of diabetes who had symptoms that were actually caused by steroids.
What kind of diabetes technology and tools do you use?
I currently use the Abbott Freestyle Libre, iGluco app, One Drop and Accu-Chek meters. As far as the Libre, I don’t have any other experience with continuous glucose monitors because it’s almost impossible for a person with T2 to get access to a CGM. The Libre was a small victory for me because it allows me to get some of the data on my body that I’ve wanted to have.
For example, now I know that between 1am-3am my blood sugar often drops. I wish the Libre was approved to be used in other sites besides the arm. It comes off frequently there. It does provide me with the ability to NOT prick my fingers so much and that’s what I love about it, along with the prediction arrows that tell me if my blood sugar is rising, lowering, or stable. However, it’s not great at catching lows. It can show a 30 point difference, so when it reads low, I prick my fingers with my regular meter to confirm.
Diabetes technology’s certainly changed over the years… any observations on the changes you’ve seen?
I’m very impressed by the sleek design of the One Drop meter. It was designed to be functional and stylish, and that’s important. I would like to see more devices designed with fashion in mind. After all, we have to carry or wear these tools around with us daily.
How exactly did you get to be a Professor of American Literature living in the UAE?
In 2013, I received a Fulbright Scholar grant to teach and conduct research in the UAE. The grant was for one academic year. When it concluded, I remained and continue to teach American Literature courses. My main area of research is about women’s texts and the paper I am writing now is about the intersection of literary studies with medical memoirs — in short, examining the importance of patient advocacy work from a literary perspective.
Wow. Can you share how you first got involved in the Diabetes Online Community (DOC) yourself?
I found the DOC shortly after I was discharged from the hospital. I was searching the web for answers to questions that I had and for people who understood what I was going through. Since no one in my family had diabetes, I needed to find peer support someplace and I came across the DSMA (Diabetes Social Media Advocacy) talk radio show and weekly twitter chat. That was a gold mine for me. Overall, I have been involved with DiabetesSisters, The Type 2 Experience, DSMA’s twitter chats, and Diabetes Blog Week – they have helped keep me connected to my virtual community and given me the courage to share my own story.
You’re now well-known in the DOC for creating platforms that support people of color and type 2 empowerment. Can you share more about those?
My blog Diagnosed Not Defeated came first. I wanted to find a motivational title for the blog and something that I could hold to in the times when I needed motivation. My diagnosis was full of trauma and I was struggling to understand how this happened to me. I didn’t know much about diabetes and was afraid that it could derail some of my future plans, if I let it. So, my motto “diagnosed not defeated” is a reminder that I won’t let diabetes steal my dreams.
Black Diabetic Info came a year later after discovering very little to no positive information about diabetes in black communities. What I found was mainly grim statistics and I wanted to be a part of changing the narrative.
What would you say about diversity and inclusion within our D-Community, online and offline?
As one of the only black women with T2 in the DOC, I can say that it’s often lonely. I’d love to see more, but I understand that everyone is ready to be public about their diagnosis and also when you have T2, there are issues of shame and stigma that arise. Even from people within the DOC (which I find to be the most hurtful). There are days when I have to take a step back. I’m very thankful for the people with T1 who have been caring, understanding, and join in the fight against T2 stigma.
I am glad to see Cherise Shockley has created the Women of Color in Diabetes, on Instagram and Twitter and other places online. I enjoy going on Instagram and seeing that community. We’ve been invisible for so long, so I am glad to see a presence.
Right. How do you think we can encourage more T2s to speak out and share their stories?
Embrace them. There are many people within the DOC who make their type secondary and come to the space of sharing their life with diabetes. These people have been VERY instrumental in me getting to a place of sharing. I think if there were more activities designed to unite all types, there might be an increase in T2s sharing.
OK, straight up: what’s the biggest challenge in diabetes right now?
For people with T2, it’s the stigma of the diagnosis. Unfortunately, we’re blamed for causing our diabetes and that keeps many T2s from joining the DOC or other groups. I believe diabetes stigma is the biggest issue right now and we must fight it.
One of the stereotypes about T2s is that they’re not physically active, but you’ve certainly busted that myth by pushing yourself toward a goal of doing fifty 5k marathons, right?
I don’t really have much more to say about that besides, it sounds good. LOL. At some point, I realized that I had completed nearly 30, and decided that fifty 5k’s sounds like a nice goal. I’m not in a rush and have no particular timeline. Just within my lifetime. I’m averaging probably 7-10 races per year. So, it’ll take some time.
I’ve come to enjoy the training for the races and the day of the race it’s really exciting to meet other people who, like you, have trained for this day. There’s something special about it and I’ve been bitten by the bug. Perhaps the most beautiful aspect of the races are that there are people from all athletic abilities present. When I started out, my only goal was to not finish last. This year, I completed a 5 MILE race… (8+k) What was I thinking?! I did finish last. But, I was so proud of myself for finishing.
Any ideas on how we can all do better in battling diabetes stigma?
I believe if people stopped and thought about the messages they receive and perpetuate, they would see that much of it is nonsensical. For example, diabetes is a growing epidemic. This means it’s spreading. It clearly can’t be because of genetics. It clearly isn’t about millions of people not exercising. The epidemic is larger than these things and if people realized that, then they wouldn’t point their fingers at the people who have been diagnosed. I ate healthy. I lost 50 lbs. I was working out. I don’t have a family history. And I got T2. So, when it comes to “preventing” T2, I did my fair share. My diagnosis isn’t my fault. It isn’t anyone’s fault and I wish this was the primary thought when it comes to T2 diabetes.
What can the diabetes industry do better?
Help people to overcome feelings of shame or embarrassment for having diabetes. Again, when devices are designed to blend in with our daily lives, it makes it easier to integrate them. Help make diabetes management easier. I’ve been highly impressed with the advancement of digital logbooks, for example. When I was first diagnosed, I had to carry around a paper and pen, and now it’s on my phone and I can email the log to myself. This has made my life easier and I have the ability to be discreet when I want to be.
What are you most looking forward to at the DiabetesMine Innovation Summit?
I confess that I am a gadget gal and I get very excited about new technological devices. I am looking forward to discovering what’s new and what’s planned for the future in the world of diabetes. I have ideas of my own about devices that would make my life better hope and attending the Innovation Summit will provide me with an amazing opportunity to connect with others who are working hard to make our lives better.
Thanks for taking the time to talk, Phyllisa! We look forward to meeting you in person at the Innovation Summit and hearing your insights.