Erica Williams Mitchell was a preteen when she was incorrectly diagnosed with type 2 diabetes. It wasn’t until she was an 88-pound, 5-foot-9 college student that doctors realized the trouble with her pancreas was actually type 1 diabetes. She’s now lived more than 35 years with the chronic health condition, trial after trial, yet still finding meaning and joy in her life. These days she’s able to talk about her diabetes journey with candor-filled sorrow as a means of ensuring that younger Black women skip over some of the mistakes she said had been made early on in her experience of learning to live with the illness.
Type 1 vs. Type 2
Given her initial incorrect diagnosis, Mitchell went nine years treating the wrong type of diabetes.
“Make sure your diagnosis is correct from the jump,” Mitchell said. “When I was correctly diagnosed as type 1 at age 19, my body had irreparable damage. So I’ve had 25 (right eye) and 27 (left eye) surgeries that could have possibly been avoided.”
But getting the correct diagnosis on the first attempt isn’t exactly a cut-and-dry thing, explained Alexandria Atuahene, MD, a North Carolina-based board-certified endocrinologist.
“It’s not uncommon that people I’m seeing for the first time are going through that kind of confusion. Is it type 1? Is it type 2? So I think a lot of that has to do with maybe people’s understanding of diabetes in general,” Atuahene said.
“Sometimes it’s not always as clear cut when somebody is first diagnosed because type 1 diabetes means there’s some injury to the pancreas. So the pancreas does not have the ability to produce an adequate amount of insulin. But at the time you diagnose somebody, that pancreas may still have maybe 15% or 20% function. So when somebody is first diagnosed based on their age, based on some other factors, the assumption can be oh, this is type 2. And they might be placed on one of the first-line medications for type 2 diabetes, which is Metformin.”
“And in some cases, people will very quickly see that ‘no, my sugars are not controlled on Metformin. Something else is going on.’ Or they might be somebody who, in addition to Metformin, made some changes, diet, exercise. And now there is increased sensitivity to insulin. And when there’s increased sensitivity to insulin, the little bit that your pancreas can do, even if there’s only 15% of functionality left, that would be enough to carry somebody through until it becomes very clear that now there’s no pancreatic function left and this person has type 1 diabetes…”
Knowing your medical options
Once given a proper diagnosis, Mitchell explained that she experienced medical racism and as such, wasn’t presented with every possible medical option to treat her type 1 diabetes.
“Because of an insurance change, I was placed with a doctor of color. The moment I sat down in his office, he said, ‘Why are you not on insulin pump therapy?’ My response to him was, ‘What is insulin pump therapy?’ Now, insulin pump therapy, don’t get me wrong, it is expensive, but I come from means, and [the white doctor I previously saw] knew that. And besides that point, you don’t know what somebody’s family is willing to do to make sure that person’s here. So you give them the information and let them figure out what to do with it.”
Prior to being switched to insulin pump therapy, Mitchell was taking seven shots per day. Her treatment options being limited due to what she is sure was medical racism, led her to write her graduate degree thesis on medical disparities.
“My thesis [was] on the disparities between the minority and the majority as it relates to health disparities and especially insulin pump therapy because I’m a living testimony,” Mitchell said.
“I could have been on insulin pump therapy even when it was being beta tested, but I didn’t know until I was an adult and trying to work and have insurance on my own. And diabetes is a snowball effect. If you don’t take care of it properly, everything can just go outta whack. If people know, give them a chance, give them the information, and let them decide what to do with it.”
Atuahene was disheartened to learn about Mitchell’s prescription story as the whole idea behind diabetes treatment is to prolong the health of the body. Proper medication and care are essential, she said.
“This is a chronic disease,” Atuahene said. “We’re not curing diabetes, but we do want to try to delay the progression of the number of complications that can occur. And from that standpoint as well comes a conversation about continuous glucose monitors or sensors as we call them. And then also pumps, which there are three major pump companies, Medtronic, Tandem and Omnipod. And really the only thing that would make you recommend one over the other would be patient preference and which one their insurance covers. So, to not even have a conversation about that at all is just completely wrong.”
Understanding blood sugar
Mitchell likens sugar to glass. She tends to think of it that way to remind herself of the pain too much of it can cause.
“What sugar really is, is little shards of glass going through those little bitty veins and capillary,” she said. “That’s why it damages the eyes and all your extremities everywhere. You have little bitty veins and things like that are most at risk.”
According to Mayo Clinic, diabetes is a group of diseases affecting the way bodies use glucose, also known as blood sugar.
“No matter what type of diabetes you have, it can lead to excess sugar in the blood. Too much sugar in the blood can lead to serious health problems,” its website states.
So, controlling those sugars becomes a lifelong quest. Atuahene not only works with her patients to manage their condition, but she is thoughtful in considering their emotions.
“I need this person to be able to just know that this is a long haul, this is a marathon, and that there is real burnout,” Atuahene said. “I think with anything in life, if you have to give a hundred percent every day to something, it’s not possible. You get to a point where, ‘OK, look I’m gonna give 80%.’ Or sometimes other things take our attention. We only have the ability to cope with so many things.”
There are so many things Mitchell wished she knew early in her diagnosis, but the biggest of them all is the need for emotional support.
”Those of us of color need to connect because you can make it through anything,” she said.
“If you know what you’re gonna face and you’ve seen somebody that’s made it through already then that’s really impactful. You’re gonna need somebody to talk to. It’s scary but it’s doable. And there is a hell of a lot worse diseases that you could have with this. I equate it with living in Louisiana, we get hurricanes. Guess what? They give you at least 72 hours to prepare. That’s the same with diabetes. It gives you a chance to prepare and to actually take care of yourself. It didn’t pop out of the blue and you gonna be gone tomorrow and there’s nothing you can do about it. You can do something about it. So do it.”
Emotional support aside, Mitchell also said she wished she understood the impact alcoholic beverages have on blood sugar. She doesn’t believe in a restrictive lifestyle, so she cautions the newly diagnosed and younger women to garner an understanding of what they choose to drink and how it will affect their bodies.
“This is not medical advice,” Mitchell said through laughter.
“But if you’re of age and you partake in a party, leave that wine alone. That is nothing but a grape! Get some hard liquor, add some diet Coke or some seltzer water or just drink it straight. Test your sugar and everything else because wine is going to shoot it through the roof. Hard liquor can make it drop but it usually just keeps it steady. But everything in moderation, because as soon you tell somebody you can’t, that’s when they’re gonna go overboard and do it. And eat your carbs before.”
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As for eating properly, Mitchell said that everything you’re eating now can be modified.
“I don’t really use butter. I use butter sprays,” she said. “Use your pantry staples as you used for the pandemic when you couldn’t go anywhere. That was some of the healthiest eating that we did because we weren’t going to restaurants, we weren’t going anywhere else. If you cooked it, you ate it because you wouldn’t cook again. Repurposed meals. So it’s just common sense thinking and that diabetic diet, it’s good for everybody in your house so you don’t have to make a special meal for yourself.”
Whether tongue-in-cheek non-medical advice or notes from her own journey, the most important piece of sister-to-sister mentoring Mitchell offers is understanding that you’re truly in for the long haul.
“You can make lifestyle changes or they can be made for you,” she said. “I’m still walking, I’m still vertical. I still can see. Diabetes will try to have you. But you have diabetes. Don’t let it have you. Everybody gotta go from something, but I’ll be damned if it’s this diabetes.”
There are no quick fixes, but remission is possible
Promises of quick fixes really grinds Atuahene’s gears.
“People who offer these quick fixes are preying on a vulnerable population,” she said. “And a lot of times they’re gonna benefit from it cause they’re gonna tell you about this quick fix and they’re gonna sell it to you as well. That should already be a red flag. Diabetes is not an off-and-on switch. So I always want people to know if it’s type 2 diabetes, certainly, you can do things to reverse some changes that will allow you to do well with minimal to no medications. But let’s not minimize the fact that those changes you made, that’s medicinal. You did something that led to that change.”
There is no cure for diabetes, but with the proper treatment plan patients can bring their blood sugar levels back to normal range and even quit taking medication.
“We call it remission because remission also implies that’s not a cure, it’s not a permanent thing,” Atuahene said. “This is OK, you did something and it led to diabetes requiring less to no medications, that’s medicinal. You did something. If any of those two people stop doing what they did, diabetes will come back. Which implies that’s not a cure.”
Both Atuahene and Mitchell agree the best way to battle diabetes is to manage your lifestyle and understand that it’s all a process.
“Get your life together and it can be kinda reversed,” Mitchell said.
If you’re interested in learning more about how diabetes affects the body and ways to manage it, Atuahene recommends visiting the following websites TrialNet, InsulinHelp, JDRF, Diabetes.org, and U.S. Dept. of Health and Human Services Office of Minority Health.
A special note on pregnancy and diabetes
According to Atuahene, women with diabetes should work to prevent pregnancy until they’re ready for family planning. This is because sometimes it can take up to two months to know that you’re pregnant. The delay in proper care can lead to possible fetal damage due to a different level of blood sugar management needed to protect the life of the baby. Atuahene specifically points to the already high infant and maternal mortality rates Black women already face in America as an extra cautionary tale.
“From a complication standpoint, if we’re thinking specifically women and pregnancy, then yes those outcomes are going to be worse. And I think it’s really important that Black women know that. We already know about the maternal-fetal rates for Black women in general. You add something like diabetes to that amplifies it. So you want to have a good team, you want to know about these risks going in and you want to do everything possible to minimize those risks.”
The target blood sugar rates are quite different for pregnant women.
“When we are planning for pregnancy, the target rates are completely different for you and baby than they are for you. So just you, no baby, fasting blood sugars 80 to 130 are acceptable. Two or more hours after you eat something less than 160 would be acceptable. Sixty to 95 is what we’re looking for in pregnancy. And that’s because the developing baby has a different threshold.”
“A high sugar just impacts [baby] in a way that, I mean they get cardiac anomalies. There are a lot of things that can happen. And granted, most women won’t even know that they’re pregnant maybe six to eight weeks down the line. A lot of organ development has already started to occur. So if we haven’t already started with the intention of this person wanting to get pregnant, we’re already behind. So a big part of that is we need to prevent pregnancy until you’re ready. Meaning you want to have a child or diabetes is better controlled. I tell people, you need to tell whoever is the father and then tell me right away.”
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