Type-2 Diabetes Diagnosis: As told by Carenity Community Members
Oct 17, 2019
Carenity members affected by type 2 diabetes have graciously told us about their journey with their type 2 diabetes diagnosis! Symptoms, emotions, tests and examinations, medical care, treatments... read their story with their diagnosis.
Carenity survey of 298 patients across the Carenity platforms.
A majority of the patients waited slightly more than a year to be diagnosed, but only consulted with 1 doctor before reaching their diagnosis.
Unfortunately for those suffering from type 2 diabetes, the time period to arrive at a diagnosis after experiencing symptoms was an average of 2.7 years. 44% of patients who participated in this survey received a diagnosis in less than a year from initial onset of symptoms, while 56% of respondents received a diagnosis more than a year after initially experiencing symptoms.
During this period, respondents experienced varying symptoms with different severities. However, the majority of patients complained of the following symptoms:
Frequent Urination | Vomiting| Fatigue | Excessive Thirst | Increased Hunger
Before the diagnosis: the impact of type 2 diabetes
We asked our members about the impacts the symptoms caused by type 2 diabetes had on their daily life before reaching a diagnosis, and this is what they had to say:
Chronic fatigue (energy levels) - 54%
Personal Life - 45%
Family life - 38%
Hobbies and activities - 38%
Social life - 37%
Professional life - 29%
Chronic pain - 21%
Other - 15%
The majority of respondents reported that type 2 diabetes had the greatest impact on their energy levels and personal life before the diagnosis. Fortunately 41% of respondents reported that only one part of their daily life was impacted by the symptoms prior to reaching a diagnosis and only 30% of respondents reported that 4 or more parts of their daily life was impacted. Members in general felt that the symptoms impacted their pain levels and professional life life the least.
Before diagnosis, only 27% of patients did their own research on the internet concerning their symptoms. A majority of those individuals reported using the internet to access websites, such as WebMD, Youtube, and HealthLine or Google. Additionally, others mentioned they spoke to family members with experience with type 2 diabetes or read books and magazines on type 2 diabetes.
93% of respondents did not try any alternative treatments for their type 2 diabetes, such as homeopathy; Only 7% of the patients that participated in this survey said they did. Those who did try alternative treatments reported use of CBD oil, massage, alkaline water, apple cider vinegar, acupuncture, chromium, fenugreek, vitamin Bs, and a tea called Ku ding cha. Many members also stated that they modified their diet to help control the disease.
Being diagnosed with type 2 diabetes: what you had to say
For many diseases, the road to diagnosis is peppered with a misdiagnosis/misdiagnoses. Fortunately for type 2 diabetes, that seems not to be the case. Only 11% of the survey participants experienced a diagnosis error prior to their ultimate diagnosis.
The few that were misdiagnosed said they were misdiagnosed with cirrhosis of the liver, recurrent urinary tract infections, asthma, arthritis, stomach ulcer, and thyroid nodules.
The shock of the diagnosis
How did patients react to their diagnosis?
It wasn’t a shock, I was expecting it - 32%
I didn’t feel any particular way - 26%
It was brutal - 20%
It was horrifying - 16%
It was a relief - 11%
I don't remember - 11%
Finding out that you have type 2 diabetes can be a frightening event, but 26% said they did not experience any particular sentiment, while 11% of respondents said they can’t remember how they felt at all when given the diagnosis.
The role of doctors and healthcare professionals
The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. Unfortunately, less than half of the Carenity members who participated in the survey felt that their doctor took their time in discussing with them their type 2 diabetes diagnosis while also being calm and emphatic. The main problem members felt was that the doctor did not show that they cared - their behavior was cold and distant.
Most comments from respondents described the diagnosis as being very direct and to the point. However, respondents seemed unanimous in that the diagnosis should not be given over the phone.
Fortunately, over all, more respondents had positive feedback than negative feedback regarding their medical care and doctor; however, some mentioned that there should be more psychological support as the news is "life-changing".
48% - The doctor took the time to explain
40% - The doctor was very calm
29% - The doctor was attentive and emphatic
11% - The doctor offered offered psychological support
14% - The doctor was cold and distant
13% - The doctor seemed like he/she did not care
11% - The doctor was too fast in explaining the diagnosis
06% - The doctor used too much scientific language
04% - Other
The patient's struggle when facing type 2 diabetes...
We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now that they had a name for their symptoms/condition, or whether they felt despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:
26% of patients felt relieved by the diagnosis, but this was coupled with 34% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise for 18% of respondents.
15% felt anger about their diagnosis; 16% reported feeling lost, confused and alone; 23% felt discouraged; and 10% of participating patients felt they were being misunderstood.
Fortunately, 40% of participating members felt determined to fight the disease, but only 12% had confidence for the future, with 8% feeling despair.
How can diagnosing type 2 diabetes be improved?
The above statistics about how patients felt following their diagnosis paints a "not so great" picture for those facing a diagnosis of type 2 diabetes. We asked in the survey how the diagnosis process could be improved; some common recommendations were that the delivery of a diagnosis should not be done over the phone, the patient should be treated like a person and not a number, more information about the condition and treatments should be provided, and lab results or examinations should be explained in detail.
The most resounding suggestions in improving the journey with a diagnosis of type 2 diabetes is for doctors and doctor's offices to equip the patient with sufficient information about the disease, treatments, and prognosis, as well as for patients to be equipped with questions for the doctor prior to the appointment by doing their own research.
Some members said this about their diagnosis
"I think [the doctor] should have sat down with me and explained it in lay man's terms. He gave [m]e the diagnosis, handed me pamplets, and walked out the room."
"[I] [s]hould of asked questions and not allowed him to treat me like a no body. I didn't know it was a serious condition at all. Still not being treated for it. I'm still very confused and don't completely know what to do or how to care for it myself."
"It wasn't explained very well and at the time I was also told I have fybromyalgia and given a few leaflets and told to go back docs to get more meds."
"[T]he doctor needs to listen to their patients; we know our bodies. [G]ives (sic) us more info about what we are diagnosis with, have a support group, do a follow up call or home visits."
"I regret that there wasn't more empathy. I feel like the doctor's attitude was take 2 of these and lose weight . To me it's more serious than that. It should be treated like the chronicall illness that it is and be dealt with in a compassionate manner. I don't appreciate much from my initial diagnosis. But, maybe I was just in shock."
Some members shared their good experience with the care with their diagnosis:
"My doctor was fantastic. He straight out told me the diagnosis and what I could do to control it. He started me on Metformin as he knew I was always dieting and trying anyway. He wanted to see me every four months and have bloodwork at specific intervals. He told me I could control this and gave me information to read."
"I'm glad my doctor took the time [t]o explain. The disease and what I should do [a]nd to do research [o]n how to combat and live a good life."
"I appreciated the full explanation and what steps need to be taken and also being shown how to count carbs."
Members feel that their doctor should show empathy, dedicate appropriate time to explain the diagnosis and answer any questions, treat the patient as a person and the diagnosis as serious, and offer more information to get support or answers.
Members also encourage patients to do their own research, be prepared before the appointment, and not let the doctor rush through without answering your questions or concerns.
And what is your story?
Share your experiences and those of loved ones in the comments below to discuss how to improve the diagnosis of type 2 diabetes!
Survey conducted and responses collected by Carenity from 298 respondents suffering from Type 2 Diabetes in France, the UK, Italy, Spain, Germany and the United States.