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Cultural Competency with Black Diabetic Info

“My journey to getting proper diabetes care was one of struggles”
-Phyllisa Deroze

 

Yesterday, we had the honor of featuring Phyllisa of @blackdiabeticinfo on an Instagram live stream. In it, she shares intimate details about her experience being misdiagnosed for 8 long years. It was only until she found herself at the brink of death before she realized the impact of the misinformation she had been receiving for years. Phyllisa is a graduate of Florida State University (BA), University of Albany, S.U.N.Y. (MA), and Pennsylvania State University (MA and PhD). She is also a literature professor who writes about the intersectionality of health, race, gender, and disability in literature and popular culture. Her background and experience being misdiagnosed led her to the creation of Black Diabetic Info. Click above to learn more & watch the whole live stream, or scroll below to read some highlights.

“I attribute testing my
blood sugar regularly
to being able to recognize
that something was wrong”

[Mitra]

"...I want to be sensitive to the fact that this is difficult stuff to talk about, so I'm just going to lend the stage to you and have you walk us through your experience"

[Phyllisa]

"This month is extra special for me, because on Feb 15th I was disgnosed with diabetes. I've shared before that Valentines day is tough for me because it's the day I passed out in my bathtub for an unknown amount of time. The next day, I returned to the doctor to tell them their previous suggestions (which was drinking Gatorade) had not been working, and had exacerbated my symptoms. When I went to the doctor again a week later, it was then that my blood sugar would not register on the glucometer. It just said "High". It wasn't like 'Heyyy girl' it was like 'We have a problem'. Unfortunately at that time I had a little bit of distrust in the medical care that I had received. My coworker ended up driving me to the hospital where I was diagnosed with (Type 2) diabetes, which was the first I had ever heard the word. I didn't know anyone who had diabetes, and I remained there for 6 days. At the time, they didin't know what type I had, so I got pamphlets for both types of diabetes"

[M]

"--That must have been so confusing"

"I have had more than one
healthcare provider tell me when
I was diagnosed (with Type 2) that
I check my blood sugar too much”

[P]

"I didn't identify with either one of them! One was full of children (I was 31 at the time) and the other one was filled with faces of senior citizens. While I pray to god to live to be a senior citizen, clearly, at 31 I'm not. And I didn't get much education when I was there. And then the night that I was discharged, I received a glucometer without strips...Insulin, but without a needle. I was like ‘What am I gonna do?’. My journey to getting proper diabetes care was one of struggles. Even though I eventually was diagnosed with diabetes, I lived 8 years with the wrong diagnosis... In 2019, I noticed my A1C going up, even though I was doing everything they tell you when you have Type 2-- ‘Change your diet’ ‘Exercise’, and then like ‘All's right with the world’. Fortunately, I always checked my blood sugar, alot. And I’m not sure if everyone in our community knows, but people with Type 2 aren’t really given the tools to test their blood sugar a lot. Some insurances only cover 50 strips a month, so I always had to supplement out of my own pocket. I have had more than one healthcare provider tell me when I was diagnosed with Type 2 that I check my blood sugar too much”.

[M]


“What?! How can you be too informed?”

[P]

“This is what I’ve been told, and I attribute me testing my blood sugar regularly to being able to recognize that something was wrong...So I inquired about antibody testing. I was denied antibody testing MULTIPLE times by a couple of endocrinologists. That summer, after doing my 40th 5K, I got really sick. I went into DKA again. I lost a massive amount of weight. I was vomiting at a diabetes conference…”

Watch the entire video to learn more about her story, and why she was denied proper care for far too long. While these are difficult topics to discuss, Phyllisa does it with such humility, grace, and humor. Phyllisa's discount code (also announced in the video) gets you $5 OFF Genteel Plus. A sweet note to end on:

 

"Over this journey, this near decade...my palette has really changed for some things...I used to LOVE Honeybuns! Put them in the microwave for 30 seconds and the middle of it just gets so GOOD, oh my goodness--that was like the best...But I don't eat that anymore. But you know [what]? I think on it, and I say to myself: 'Phyllisa--you don't eat it anymore...but when you did...You SHO'nuff ate it! [laughter]. So that's what I tell myself...See, that's how I talk when I'm at home with my people..."

  

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