dQ&A Community Members Share Their Diagnosis Experience
Being diagnosed with diabetes can be a life-changing experience. Being diagnosed with diabetes and knowing very little about it is even more daunting. To better understand the diagnosis experience, we reached out to our community members with type 1 and type 2 diabetes. Over 5,700 of them responded sharing their experience. They shared where they were diagnosed, what symptoms they were experiencing, and how they felt when they found out.
Almost half of respondents with type 2 diabetes were diagnosed during a routine primary care visit. Those with type 1 diabetes, on the other hand, were most often diagnosed during a healthcare provider visit prompted by diabetes symptoms (although many did not know the cause of their symptoms at the time). Among those with type 2 diabetes, Native American, Black, and Latino respondents were twice as likely to be diagnosed during an ER visit, compared to white respondents. Alarmingly, over one in five people with type 1 diabetes were diagnosed after admission to the emergency room.
Respondents with type 2 diabetes were most frequently diagnosed during a routine primary care visit, while those with type 1 were most often diagnosed when visiting a healthcare provider due to diabetes symptoms
Base: Respondents with Type 1 diabetes (n=2,475), Type 2 diabetes (n=3,271)
“I was 12 years old and really sick. My parents thought I had the flu, but when I would not wake up I was rushed to the hospital. I was in a coma for about 5 days. Doctors assumed I overdosed, but one decided to check my blood sugar.” – Luis, diagnosed with type 1 diabetes at age 12
For both those with type 1 and type 2 diabetes, increased thirst and frequent urination were the most common symptoms experienced at the time of diagnosis, although they were more prevalent in people with type 1. Fatigue was also frequently experienced by both groups, and unexplained weight loss was common for people diagnosed with type 1. Black respondents with type 2 diabetes had significantly higher rates of blurred vision and infections at diagnosis, compared to white panel members.
“I went to an eye doctor when my vision got blurry. He just gave me a prescription of glasses and missed what was the first sign of t1d. I had all the symptoms for 3 months and never put it together. Even lost 15 pounds between Thanksgiving and Christmas! When I could not cut my thirst the day before Christmas, my mother made me call my sister who is a physician.” – Cynthia, diagnosed with type 1 diabetes at age 39
Increased thirst, frequent urination, unexplained weight loss and fatigue were the most common symptoms experienced at time of HCP visit
Base: Respondents with Type 1 (n=1,241), Type 2 (n=870), who were diagnosed at a healthcare provider visit.
Almost two-thirds of respondents were unaware that their symptoms were related to diabetes. This lack of awareness can delay diagnosis and treatment, with sometimes dangerous consequences.
“Over a period of weeks, I began to lose weight, no matter what I ate. I acquired over time a growing, gnawing fatigue, unquenchable thirst, “sugary” urine, etc.–all things I recognize now as the classic symptoms. However, I was 51 years old with no family history of diabetes of any kind. I didn’t know I had diabetes. The point came where I could barely walk across the room without needing a rest. I began to have trouble drawing breath, so I decided that maybe I ought to go to see my primary care physician. He diagnosed a viral infection in my throat, and recommended I ‘just ride it out.’ I tried that, and things got much, much worse. A night came when I couldn’t drink or eat without vomiting; I couldn’t stand without vomiting; I couldn’t speak more than a word or two without vomiting. I landed in an emergency room, where the ER doctor took one look at me and asked, ‘How long have you been a diabetic?’” – Roger, diagnosed with type 2 diabetes at age 51
The diagnosis experience is deeply personal and can be incredibly emotional. Everyone’s experience is unique and influenced by a myriad of factors, including diabetes type, age at diagnosis, family history and background, and level of care. Here are a few more of the experiences our panel members shared with us:
“I was 10 years old so I didn’t know about the symptoms, but my parents did. I remember the doctor who diagnosed me and it was a horrible day for me. To this day, I cannot see that doctor due to the emotional trauma even though I know it was not her fault. I remember crying and thinking I could never have pizza or ice cream again, which of course, was not true.” – Eileen, diagnosed with type 1 diabetes at age 10
“Was diagnosed on our 40th wedding anniversary just before a cruise to Alaska. It was definitely a major event in our lives. However, we went on the cruise followed the instructions of our primary care physician and did the best we could. Upon returning home, we attended all of the required seminars related to the diabetes condition. That was eleven years ago. With small adjustments we have been in control ever since.” – Allen, diagnosed with type 2 diabetes at age 66
“I felt very unprepared to deal with the diagnosis. I had to do research on my own. I would have liked to have talked with a nutritionist to plan a diet that considered all of the food allergies I have.” – Christy, diagnosed with type 2 diabetes at age 48
“I remember being quite surprised when an ER nurse started to holler at me for not taking care of my diabetes. I did not know I was diabetic. Up until then, I was ‘normal.’ I was mortified.” – Joanne, diagnosed with type 1 diabetes at age 48
A diabetes diagnosis can instill fear and confusion, but being equipped with the right tools and a support system can help. While the field has made strides in patient-centered and team-based care, better patient and provider education and communication are still needed to support people as they navigate a new chapter in their lives.
Here at dQ&A, we are passionate about developing better tools and building better systems to improve the lives of people with diabetes. If you’d like to learn more about this research or our other capabilities, you can email us at firstname.lastname@example.org.
We are sincerely grateful to our community members for sharing their stories.
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About dQ&A – The Diabetes Research Company
dQ&A is a social enterprise that’s committed to making life better for people with diabetes. We harness patient voices to help develop better tools and policies for people with diabetes and improve health outcomes. For over ten years, we have been tracking the experiences and opinions of people with diabetes in the United States, Canada and Europe. We are trusted by patients because of our independence and commitment to them. Our team has decades of experience in quantitative and qualitative research and a deep knowledge of diabetes. Many of our own lives have been touched by diabetes, so we have a personal stake in our work. To learn more and to see research highlights, you can follow us on LinkedIn (dQ&A – The Diabetes Research Company), Facebook (@dQandA) and Twitter (@dQAresearch).