We were recently lucky enough to have a zoom call with Phyllisa Deroze, a prominent diabetes lifestyle blogger and global diabetes patient advocate. Using her blog ‘Diagnosed Not Defeated’, and website ‘Black Diabetic Info’, she tells her story and educates others about diabetes from a patient’s perspective and provides culturally competent information about diabetes in black communities. She spoke to us about her experience with diabetes, including her incorrect diagnosis, stigma of type 2 diabetes, and the effect of diabetes on mental health.
We would like to thank Phyllisa for taking time out of her busy schedule and sharing her diabetes experience with us. We definitely learnt a lot!
Can you start by telling us a bit about yourself and your diabetes experience?
I was diagnosed in 2011. I had all the classic symptoms of hyperglycaemia, including blurred vision, persistent yeast infections, tingling in feet and hands, and extreme thirst. I went to a doctor and told them that something was wrong with me, I was told to drink a sports drink because my electrolytes were imbalanced. A week later, I passed out in my bathtub. I was diagnosed with diabetes in the ER after that. At the time I was unable to walk, was in a wheelchair, and I remained in the hospital for 6 days. They couldn’t tell me which type of diabetes I had initially, but after I was discharged, I was told I had type 2, and I lived with this diagnosis for 8 years. In 2018, I realised that things were not quite right. When you are told that you have type 2 diabetes, you’re advised to have a very restricted diet and increase your exercise regime. I had already begun a healthy journey and had shed about 80 pounds. I couldn’t understand how I ate less and exercised daily, but still my blood sugar levels got worse.
I gave a speech in Dubai to a group of medical physicians, and after hearing my story, a couple of physicians from North Africa that were in the audience suggested I get tested for LADA, Latent Autoimmune Diabetes in Adults, which is a form of type 1 diabetes. I thought it would be simple to do, but it wasn’t. In Summer 2019, my blood sugar levels were highly elevated – I knew I was in diabetic ketoacidosis (DKA) because I’d experienced it when I was first diagnosed. Eventually, it was my gynaecologist who tested me for antibodies and the results were positive for type 1 antibodies. After my endocrinologist saw that, she apologised for not testing me when I asked her repeatedly. In September 2019 I got the correct diagnosis, so I actually have two diaversaries! I think my incorrect diagnosis has a lot to do with the stigma and biases surrounding type 2 diabetes. According to Arleen Tuchman’s book, Diabetes: A History of Race & Disease, there is a strong association in America between black people and type 2 diabetes rather than type 1. Similarly, with body size, type 2 is often linked to obesity and thin people are ascribed to type 1. Based on my experience, I think that stigma and bias around body type and race influences misdiagnoses. If you were to remove my characteristics of being black, and living with obesity, so that I’m just a woman with no genetic history of diabetes, who suddenly experiences DKA, that should automatically warrant type 1 diabetes antibody testing. Why then does race and weight change that?
Tell us more about type 2 diabetes stigma
I started my blog, Diagnosed Not Defeated, from my hospital bed, so I’ve been blogging since 2011. I initially blogged under an alias because of the stigma surrounding type 2 diabetes. When you’re diagnosed with type 2 diabetes one of the first questions you ask yourself is ‘how did I bring this upon myself?’, which is very unfortunate. The first time I read ‘you did not cause your diabetes’ was when I started reading information about type 1 diabetes. I have yet to read those words in anything written for type 2, which only adds to the stigma that type 2 diabetes is your fault. When I was able to say ‘I didn’t cause my diabetes’, and push back on everything that people said, then I was able to blog with my real name. It took 6 years to do that. Many people do not understand diabetes and think it is a death sentence. What I discovered, even when I was blogging anonymously, is that people who knew me always said they learned something new by reading my blogs and watching my videos. We wouldn’t be having this conversation right now if I still used an alias. When I put my email out there, people reached out straight away. I got to a place where I was able to stand in the face of type 2 diabetes stigma on my blog. I did a whole video where I revealed who I was. I dressed up, I put on the song “I’m coming out” and I uploaded it, but even as I uploaded it, I was scared. I did not get over the fear of diabetes stigma, I just pushed through it instead.
Can you talk to us about diabetes burn out and how your diabetes impacts your day-to-day life?
A lot of people with type 2 diabetes are diagnosed when they’re adults, so they already have their routine and now there’s this added thing they need to manage daily. The first thing I think about in the morning is diabetes and the last thing I think about at night is diabetes. I remember just wanting my brain space back. When I was newly diagnosed, I felt completely overwhelmed about everything! My 10-year diaversary was in February 2021, and the diabetes stuff that used to be very time consuming is less so now. For example, the first time I pricked my finger to check my blood sugar was probably a 5-minute process and now it takes about 2 seconds. I didn’t know it was going to get easier, but it becomes a part of everyday life. I think about diabetes when I’m going to eat breakfast, and when I put cream in my coffee, because that dictates how many units of insulin I need. When I go walking, my blood sugar can plummet if my blood sugar isn’t within range. So, I had to learn how to exercise again. Diabetes is as much a part of our home as any one of us. It has to be considered with everything.
How was your experience with insulin?
Initially when I was first diagnosed, I was prescribed insulin. Then after around 9 months I went through this honeymoon stage with my blood glucose, and I managed for almost 3 years with only diet and exercise. When I was diagnosed with LADA, I was prescribed insulin again, and needed to give myself multiple daily injections. I know there are people who do the multiple injections, but I didn’t have a good experience, so I wanted to get an insulin pump and I’m happier with pump therapy.
Can mental health care for patients with diabetes be improved?
Yes, it can be improved. Most of my appointments with healthcare professionals are too brief, just in and out. I have had experiences where questions about a new medication I’ve been given were not answered thoroughly. I am rarely asked how I am doing emotionally. When I had my daughter, I had a challenging postpartum experience. When my daughter was 6 months old, I saw my endocrinologist who said my A1C results were great, and to keep doing the same. I replied, ‘I’m not doing too well emotionally at the moment, when I get around my mom and my grandmother, I just want to celebrate the holidays with them, and mentally I can’t be burdened with diabetes right now’. It’s so important to talk to your doctors about how you’re feeling, as she was able to adjust my regimen by understanding what was coming ahead. This helped to prevent a negative situation and I was better prepared for the holidays.
Can you tell us a bit about your website Black Diabetic Info and why you started it?
I started my blog, Diagnosed Not Defeated, from my hospital bed, and a year later I created Black Diabetic Info. After a year of figuring out how to manage diabetes, I realised there was not a lot of information that talked about diabetes with an understanding of African American, African and Caribbean cultures. As someone who likes to eat around the African Diaspora, such as Senegalese Thieboudienne and Nigerian jollof rice, I had no idea how these would fit in with my diabetes meal plan. In 2012, when I started Black Diabetic Info, I started interviewing black nutritionists, and I wanted to talk to black pharmacists about medication. I needed to hear things about diabetes that fit within my cultural understanding. If I’m seeing someone who tells me I have to eat asparagus and grilled chicken breast, I don’t relate that to my diet easily. Collard greens on the other hand I know a lot more about. When you talk about green vegetables that I don’t eat regularly, then I may not know how to prepare them in combination with my meals. Initially, I felt I needed to deviate from my culture in order to manage my diabetes properly, which isn’t true. These things were important to me and I thought they might be important to others as well, so whatever information I gathered, I shared on Black Diabetic Info. I strongly believe you must become the change you want to see in the world.
Find out more about Phyllisa’s story and diabetes on her blog:
https://diagnosednotdefeated.com/
Find more culturally competent diabetes information for black communities here:
