Type-2 diabetes diagnosis: Carenity members tell their story

On average, patients waited slightly more than a year to be diagnosed and the majority consulted 2 doctors before reaching their diagnosis.

The journey to being diagnosed with a condition can be a long one. But patients suffering from Type-2 Diabetes reported relatively low wait times for diagnosis; the average journey to diagnosis was slightly over one year after first experiencing symptoms. A small percentage of respondents reported that they suffered from no symptoms at all so their diagnosis was more of a surprise. Overall, the symptoms ranged in severities and locations, but the majority of patients complained of the following: 

Fatigue | Frequent Urination | Extreme Thirst | Blurred Vision | Swelling | Fluctuating Weight

Before the diagnosis: the impact of Type-2 Diabetes

We asked our members what aspects of their daily life had been affected by these symptoms caused by Type-2 Diabetes?

    Personal life - 45%

 Chronic fatigue - 54%

Family life - 38%

Hobbies and activities - 38%

Social life - 37%

Professional life - 29%

Chronic pain - 21%

Many of members living with Type-2 Diabetes found that they suffered most in their personal life as many were too tired to spend time significant others or to go out before they were diagnosed. This can perhaps be connected with the chronic fatigue reported by a majority of respondents. Fortunately, chronic pain was the least felt impact by respondents. 

Before diagnosis, only 27% of patients did their own research on the Internet concerning their symptoms and they reported using websites such as the NHS, Mayo Clinic, and Diabetes UK, or just inserting symptoms into Google. Several respondents mentioned that they recognized the symptoms from family members who suffered from the same condition or because they were employed in the medical sector.

Respondents to our survey were not enthusiastic about alternative treatments, with only 7% responding positively to having tried them. Those who did experiment with alternative therapies tried intermittent fasting, exercise and herbal medicines such as aloe vera and ginseng among other remedies.

Being diagnosed with Type-2 Diabetes: What they had to say

For many diseases, the road to being diagnosed is hindered by misdiagnosis. However, this was not the case for the majority of the respondents to our survey. Only 11% were subjected to a diagnosis error, which is good news for Type-2 diabetes patients as it means they can start their treatment as soon as possible with a much higher success rate.

Carenity members who were misdiagnosed reported false diagnoses of arthritis, obesity and postpartum depression.  

The shock of diagnosis  

For some respondents being diagnosed with Type-2 Diabetes was a traumatic and life-changing event while others reported feeling nothing at all.

It wasn’t a shock, I was expecting it - 32%

It was horrifying - 16%

 I didn’t feel anything in particular - 26% 

 It was brutal - 20%

 It was a relief - 11%

Finding out that you have Type-2 Diabetes can be a frightening event but surprisingly, 32% of those surveyed said they were expecting it, while 26% of patients don't remember feeling any way in particular. Unlike other chronic conditions, where receiving a positive diagnosis can sometimes be met with shock or horror, the majority of Type-2 Diabetes respondents felt more indifferent or unsurprised than frightened.

The role of doctors and healthcare professionals

The role of the healthcare professionals making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that most Carenity members felt that their doctor took their time explaining the diagnosis to them whilst also being calm and empathetic. The main fault some respondents found with their physician was an impression that the doctor didn't care about their patient or that they were cold and distant while delivering the diagnosis. However, the positive ratings far outweighed the negative ones.

 The following statistics show how members felt their doctors handled the situation of relaying their diagnosis to them:

40% - The doctor was calm

48% - The doctor took the time to explain

29% -  The doctor was empathetic 

11% -  The doctor offered psychological support

14% - They were cold and distant

11%  - They were too fast explaining

13% -   They looked like they didn’t care 

6%    -  They used only scientific, hard to understand language

Patient struggled with facing Type-2 Diabetes diagnosis

We asked our members how they felt emotionally after receiving their diagnosis, whether they felt optimistic or pessimistic about their future medical journey. Many members responded having felt several emotions at once:

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, according to 18% of respondents. 16% reported feeling lost, confused and alone, 15% felt anger about their diagnosis, 10% of patients had the sensation of being misunderstood whilst 23% felt discouraged.

One Carenity member stated:

"I disbelieved it. Having not recognised any symptoms previously, although on reflection I developed a severe stomach upset especially if I had consumed lager. After hospital diagnosis, I tried arguing that I had been consuming Coca Cola!"

Fortunately, 40% felt determined to fight the disease but only 12% had confidence for the future while 16% felt despair. 

How can diagnosing Type-2 Diabetes be improved?

The most common problem that patients had when receiving their diagnosis was a lack of information:

- "I think it [the diagnosis] should be explained more"

- "I would have liked more detailed explanations. More advice and suggestions from doctor or nurse."

- "The medical staff need better understanding of how to talk or explain a diagnosis and what this will do to me and  how to fight it with diet."

Other respondents were upset with the way they were informed, a perceived lack of empathy, or how long it took to get a proper diagnosis:

- "Reassurance should have been given immediately. Psychological support should be given at the same time as the diagnosis. The feelings of shock and fear are overwhelming."

- "Empathy and care would be helpful. Time is important too. Time should be given; even a few minutes for the patient to absorb the information."

- "If a full blood investigation had taken place sooner I could have been treated sooner. A late diagnosis has taken my life as I knew it and my job. Only the person with the pain knows how bad it can be and it changes on a daily basis."

On the positive side, many patients were happy with the way medical staff informed them of their diagnosis and the information they received:

- "I felt well supported and was grateful for the follow-up appointments, including the education class."

- "My GP was very kind and sympathetic and took time explaining things to me."

- "I was encouraged to reduce my blood sugar levels through diet and exercise. Cutting out sugar, white bread, pastry, pasta & rice."

- "I appreciated how understanding and informed they were about telling me that diabetes can be managed and dietary changes can help with the symptoms of the disease." 

And what is your story?
Let's share our experiences and that of our loved ones in the comments on this article to improve the diagnosis of Type-2 Diabetes!