I was misdiagnosed with the wrong type of diabetes and struggled with that for nearly a decade.
I’ve since learned that many others — in particular women of color like myself — have also been wrongly diagnosed, which brought on feelings of fear, confusion, and shame.
Here’s how it happened for me.
I was diagnosed with diabetes in 2011 after living with symptoms of high blood sugar (hyperglycemia) for weeks. I remember having an unquenchable thirst, and because I was drinking water so often, I was urinating multiple times within an hour.
By the time I saw a healthcare professional, my hands and feet felt numb and tingly all the time. I was told that I had an electrolyte imbalance and given directions to treat it.
The following week, all my symptoms increased, and I had additional issues, including rapid weight loss, blurred vision, cognitive problems, and fatigue.
When I returned to my doctor to inform her of my status, my blood glucose levels were finally checked with a meter. After the lack of a numerical output, I was given a shot of insulin.
At the time, I didn’t know what a glucose meter was, let alone that the letters “HI” flashing on the device meant that I was in danger. I didn’t know that the needle placed in my arm contained insulin or how it functioned.
While in the room with my doctor, I only knew that the trust I had was gone, and I needed to seek care elsewhere.
A co-worker drove me to the emergency room. When we arrived 20 minutes later, I couldn’t walk on my own or stay fully alert for longer than moments at a time.
There, in the ER, I heard the word “diabetes” for the first time.
I was confused and wondered how this could apply to me as a 31-year-old woman with no family history of diabetes. I thought diabetes happened to people much older or much younger than me.
Still, my confusion was combined with feelings of relief, because I finally knew the reason for my array of symptoms.
I remained in the hospital for 6 days. When I saw an endocrinologist for the first time, he diagnosed me with type 2 diabetes (T2D).
That was my first diabetes diagnosis, and I lived with it for 8 years.
Over time, I noticed that my A1C results were in an upward pattern, although I had shed more than 50 pounds and was the healthiest I had been in years.
I eventually asked my endocrinologist for type 1 diabetes (T1D) antibody testing.
Because T1D is an autoimmune condition in which the immune system makes antibodies that destroy the beta cells inside the pancreas, getting antibody testing determines whether a person has T2D or T1D.
Naïvely, I thought if I asked to have the tests done that I would get them easily. After all, I thought that my care team would want to know that they were treating the right condition.
But all my requests were denied repeatedly for more than a year. Instead of ordering tests, my oral medications were increased. In the summer of 2019, I started losing weight again, and my blood sugar levels remained well above normal.
After living with diabetes for 8 years, I knew that something was seriously wrong, especially after becoming a 5K enthusiast competing in races regularly and feeling in excellent shape.
When my blood sugar levels would not go below 200 mg/dL and would rise to 300 with less than 45 grams of carbs, I asked my OB-GYN if she would order a T1D antibody test.
She agreed, but informed me that any results would have to be given to my diabetes physician because her specialty is gynecology, not endocrinology. I agreed. With the prescription in hand, I went to the lab.
Ten days later, the results returned positive. After showing the paper to my endocrinologist, she ran a full panel of tests. I tested positive for two T1D antibodies.
That was my second diabetes diagnosis.
Having lived with a misdiagnosis, I learned that it is important to know your body and to keep seeking answers to your questions, as well as learning that being misdiagnosed is an emotional experience.
My life changed the moment I received the phone call from my endocrinologist informing me to “stop taking all oral medication. Come into the office today and get insulin, because you have LADA and are insulin-dependent.”
Latent autoimmune diabetes in adults — LADA — is “autoimmune diabetes in adults with slowly progressive beta cell failure,” and it could take years before the person becomes fully insulin-dependent. In my case it was 8 years.
Being diagnosed with diabetes again was still a jarring experience. Overnight I went from taking oral medications and restricting my carb intake to giving myself multiple injections throughout the day and at bedtime.
Rather than eating using the plate method, I needed to learn the carb count of everything I ate, even if it was a small bite.
I felt a wave of emotions. I was confused about being misdiagnosed for 8 years. I was angry that I was denied antibody testing for over a year.
I was thankful that I kept asking for the tests. I was puzzled about what it would mean for my work as a T2D advocate. I was overwhelmed and cried a lot.
It’s vital that people are given the correct diagnosis, because treatments for T2D and T1D vary. It could be dangerous for a person with extremely low insulin production to take medications that force the pancreas to produce more insulin.
Being misdiagnosed could also be deadly.
Because I wasn’t prescribed insulin, when my glucose levels remained critically elevated, I was ill-equipped to prevent my second experience of diabetic ketoacidosis (DKA).
DKA is a life threatening complication that frequently occurs at diagnosis of T1D, and commonly when someone is misdiagnosed.
In addition to the physical harm, there’s also psychological and emotional trauma that a person endures when misdiagnosed.
I feel that my story of being misdiagnosed with T2D should be rare, but unfortunately it isn’t.
Research published in the journal Diabetologica in 2019 found evidence that more than one-third of adults over age 30 who receive an initial diagnosis of T2D may actually have T1D.
In a commentary about those research findings, Dr. Naveed Saleh wrote that “misdiagnosis… may persist even years later and lead to adverse health outcomes without proper treatment.”
When it comes to diabetes testing and African Americans, it was discovered that one genetic variant in particular, found only in African Americans, significantly reduces the accuracy of the A1C blood test used to diagnose and monitor the condition.
This means around 650,000 African Americans in the United States could have undiagnosed diabetes.
While this study focused on T2D, it underscores two important facts: Many African Americans are misdiagnosed or undiagnosed, and current standards of diabetes diagnosis must be improved to provide an accurate diagnosis.
Another barrier facing people of color with diabetes is that T1D has historically, in the United States, been framed as a “white condition.”
As Arleen Tuchman explains in her book, “Diabetes: A History of Race and Disease”:
“Since the beginning of insulin therapy a century ago, type 1 diabetes too often had been seen as an upper middle class, white affliction. Lack of medical care historically prevented many without means from receiving a correct T1D diagnosis before the condition proved fatal.”
When entire populations are excluded from common assumptions about who can and cannot get T1D, this leaves ample room for misdiagnoses to occur.
Certainly, stigma plays a role, as people are often made to feel that a diabetes diagnosis is their own fault. That may make some people even more reluctant to ask probing questions of their doctors, even when they feel something is “off.”
Encouraged by the traditional patriarchal approach to medicine, doctors can also be condescending and dismissive of patients’ concerns.
This unfortunately mixes with inherent bias in some cases, making it especially hard for people of color to feel respected and listened to by doctors and other healthcare professionals.
A survey conducted by DiabetesMine in September 2020 (that I helped create) explored the experiences of BIPOC (Black, Indigenous, and People of Color) with diabetes technology and care.
Respondents reported that they often felt judged or stigmatized by doctors, and that they had received only minimal or even false advice, like a misdiagnosis.
In fact, 11.4 percent of our 207 respondents said they were initially misdiagnosed.
Diabetes Canada, for one, writes about how we must do away with dismissive attitudes by healthcare professionals, and especially the “blame the victim” approach.
They call for healthcare professionals to be “offered training to support a psychosocial approach and ensure patients are treated with compassion.”
I know all too well the emotional roller coaster of being misdiagnosed. I’ve tried a number of ways to process the experience, even holding a funeral for my beta cell function and mourning the ordeal.
Although I felt that my diabetes care eventually received much-needed attention, my emotional support was lacking. I felt alone and neglected in that regard.
To explore feelings around this phenomenon, I questioned five other women who were misdiagnosed with T2D for a time period that ranged from 2 weeks to 4 years.
Only one reported that any member of her healthcare team asked about her emotional well-being after being misdiagnosed.
While they each felt a range of emotions, anger and frustration were the most common.
When asked to describe what it was like emotionally to be misdiagnosed with the incorrect type of diabetes, here’s what they said:
“It was scary. I was taking medicine and treatments that were wrong for my body. I found out after I was pregnant and immediately hospitalized. Me and my baby were in jeopardy.”
— Kaitlyn Mendez, misdiagnosed for over a year
“It was confusing and caused a distrust of medical staff. Instead of doing a test and also instead of involving me in my treatment, they made assumptions that I probably needed injected insulin but wouldn’t take it and they thought older adults only get type 2.”
— Angelica Jacobs, misdiagnosed for 2 weeks
“Honestly felt like a fraud. Like my whole T2D experience was a lie. Like I couldn’t be an advocate for people with type 2.”
— T’ara Smith, misdiagnosed for almost 2 years
“I almost felt like I was being gaslit. My doctors would tell me I wasn’t trying hard enough, and that my numbers were not good enough, but the solutions never worked. When I brought up the fact that I should be tested for antibodies, I felt ignored, so I stopped asking. It made me feel really bad about myself. I had a pile of medication sitting in front of me, eating 20g of carbs or less per day, and exercising up to 2 hours a day. I kept wondering what was wrong with me and why I couldn’t get things under control. Then, when I got my A1C back into normal ranges, and it skyrocketed again, I felt helpless.”
— Mila Clarke Buckley, misdiagnosed for 4 years
“Being misdiagnosed was taxing. I struggled to wonder why my diabetes didn’t remotely resemble any type 2 diabetic I knew. The constant narrative of ‘lifestyle’ wore me out. But understanding what I have is empowering because now I can properly take control and get what I need without judgement.”
— Pamela Wynter, misdiagnosed for 2.5 years
Especially because the most common diabetes misdiagnosis is when T1D is mistaken for the less immediately dangerous T2D, we should aim to change this as soon as possible.
I believe that information is the most vital resource we have to help lower and eventually eliminate the rate of misdiagnosis in adults with T1D.
For example, if more people knew that almost half the population of people with T1D are diagnosed as adults, and if more people of color with T1D were visible in the media, this would help increase common awareness of T1D.
Antibody testing for T1D should happen routinely when any adult presents with diabetes, even if a doctor feels that the person doesn’t “fit” the usual characteristics of a certain type of diabetes.
Finally, it’s up to us patients to speak up and persist.
If you think you’ve been misdiagnosed and your questions aren’t being answered, tell your doctor so and get a second opinion as soon as possible.