Type 1 Diabetes diagnosis – Our members talk about their experiences
Nov 6, 2019
Getting diagnosed with a chronic condition is a life-changing event. We asked Carenity members living with Type 1 Diabetes to tell their story.
Type 1 Diabetes diagnosis as recalled by Carenity members. Survey of 187 members carried about by Carenity in France, UK, USA, Italy, Spain and Germany.
On average members waited 1,4 years and saw 2 physicians before they were properly diagnosed with Type 1 Diabetes.
The members surveyed waited on average a little less than a year and a half before they were diagnosed. Being unusually thirsty was the chief symptom that let them know that something was wrong.
Extreme Thirst| Heavy Sweating| Fatigue | Weight Loss| Frequent Urge to Urinate| Vision Problems| Dizzy Spells
Chronic Fatigue/Sleepiness - 73%
Free time/Hobbies - 47%
Social Life - 46%
Professional Life - 44%
Family Life - 44%
Intimacy/Sex Life - 32%
Significant Physical Pain - 19%
Diabetes is a much-studied illness and both GPs and specialists are generally well informed about the characteristics of the disease: 78% of Carenity members were diagnosed correctly the first time. A few did receive false diagnoses for the following illnesses:
Type 2 or Gestational Diabetes | Intoxication | Depression | Vitamin Deficiencies | Anorexia | Gastritis | Chronic Fatigue Syndrome
"I saw my GP who prescribed a cream solution to help calm my acid reflux and heartburn issues. But, I kept losing more and more weight. I dropped from 9 to 7 stone (60kg to 48kg) and I was thirsty all the time. My whole life was a constant back and forth between the faucet and the loo. Then, I fell into a coma and when I got to hospital the tests showed 9g of glucose in my blood. I was immediately put on insulin."
"My GP was convinced I had Type 2 Diabetes and he refused to refer me to diabetologist. Fortunately, I was able to snag an appointment with one on my own, but it took me three months to get diagnosed (…) I really resent the time I wasted because of his (the GP’s) stubborn attitude."
"When I was pregnant, they told me that I had symptoms of gestational diabetes and that everything would go back to normal after the baby was born! A few months later, at the office, my workmates told me: ‘We always know when you’ve been to the loo! It smells as sweet as a candy shop in there!’ I’m not sure how or how long after that, but the results of another test prompted my GP to test me for diabetes."
"I had a solid, muscular physique and then I started dropping weight, low energy and falling asleep in class when before I was very active and a great student…That lasted about a year because a doctor who was filling in for my GP didn’t recognise the symptoms of diabetes and thought I had an eating disorder or was being starved."
Before being diagnosed, only 15% of patients had researched their symptoms online and only 6% used alternative medicine to treat their symptoms.
Being diagnosed with a chronic illness can be a life-changing event. Some patients felt afraid after the diagnosis, but others were relieved to find an explanation for their suffering. In the case of Type 1 Diabetes, many of the members surveyed, some who were quite young at the time of diagnosis, had feelings of shock and fear.
It was a shock - 56%
It was scary - 29%
I was expecting it - 15%
I didn't feel anything in particular - 14%
I don't remember how I felt - 12%
It was a relief - 10%
The role of the health-care professional who announces the diagnosis is very important. Sometimes patients didn’t feel heard or sufficiently informed about their illness; others surveyed were very grateful towards their physicians who lent them support in a difficult moment in their lives. For Carenity members diagnosed with Type 1 diabetes, most described their physician as an “ally”. Most patients appreciated that their physician took the time to explain their illness to them.
52% - Took his/her time to explain everything to me
48% - Was very calm
27% - Was empathetic
12% - Referred me for psychological support
14% - Was in too much of a hurry
13% - Was cold and distant
9% - Spoke in scientific or hard to understand language
7% - Didn’t seem to care
"My GP told me right way that it was Type 1 Diabetes and that it was something I’d have for the rest of my life. He told me to start injecting myself right way. It was the only way to stay healthy for as long as possible."
"47 years ago, people didn’t know about diabetes like they do now. My mum thought the doctor was going to cure me like he was treating a cold. She didn’t realise this was something I’d have to live with for the rest of my days."
"My doctor told me: you’re showing signs of diabetes. ‘We’re going to put you on a diet and you’ll spend a few days in hospital and then everything will be just fine.’ I took that to mean that it was a temporary thing that was curable. Once I got to hospital, it was a slap in the face when the nurse who did my first insulin injection told me ‘Ah no, miss. You don’t have a case of diabetes, you are diabetic. This is for life.’ It was 25 years ago, but it feels like it was only yesterday."
"30 years ago, the Internet didn’t exist. When I starting getting symptoms, I was only 17 and at that age, you don’t know what’s happening to you, especially since no one around me had ever talked about diabetes (…) I guess I accepted the disease without realising it. At the hospital, they told me what diabetes was, but I still didn’t really understand what was happening. I understood later and now I live just fine."
Following their diagnosis, 28% of patients were determined to fight against their illness. 19% felt relieved to get a diagnosis, but only 7% felt confident about the future.
40% felt anxious, 35% lost, 29% angry, 24% desperate and 21% discouraged.
Loneliness was also common: 22% felt alone, 16% felt misunderstood by family and friends.
Thank you to all the members who participated in this survey. Our Carenity members took the time to share their experiences because they wanted to help other patients get diagnosed as quickly as possible.
"Patients should be told face to face and not by telephone or through a third party. It’s the patient’s business and no one else’s."
"I appreciated that my GP didn’t lie to me about the disease. He told me to do my own research and to stay curious. I could ask him anything and his explanations were very clear"
"Well first of all, if they hadn’t gotten my diagnosis wrong the first time, I wouldn’t have fallen into a coma. A lot more knowledge about how to talk to patients is needed."
"Doctors need to know how to share all the information they have. Between an intern who told me that complications wouldn’t show up for another 15 or 20 years and the chap in the ambulance who told me I was going to go blind and get my foot amputated…I was traumatised. Once I saw a diabetologist, it was a huge improvement, I got the knowledge I needed."
"By taking her time, instead of just waving off my symptoms, the diabetologist who took care of me during my pregnancy discovered that I had been suffering from diabetes for the past 4 years."
Do the responses to this survey line up with your experiences? Share your experience and let’s start a discussion to help improve patient care for members living with Type 1 Diabetes!
Survey carried out by Carenity with 187 participants living with Type 1 Diabetes in France, UK, US, Italy, Spain and Germany.