Depression diagnosis: Carenity members tell their story

Survey conducted by Carenity with 271 responders living with depression.

On average it takes 5,3 years and consultations with 3 doctors before a patient is properly diagnosed with depression.

Carenity members living with depression spent an average of 5 years to obtain a diagnosis! This despite the fact that the vast majority of members were clearly suffering from a decline in well-being. Here are some of the symptoms they pointed out:

Sadness| Stress | Crying| Anxiety| Weight Gain or Loss | Burn-out | Melancoly| Fatigue | Suicidal Thoughts | Apathy

Before obtaining a diagnosis and gaining access to treatment, patients living with depression felt symptoms were turning their life on its head. Respondents reported nearly every aspect of their life was effected on a daily basis, with the exception of physical pain. Relationships with others were the most drastically affected by depression: 

Social Life - 88%

Family Life - 80%

Chronic Fatigue - 77%

Pastimes and Physical Activities - 77%

Work-Life - 76%

Personal Life - 74%

Significant Physical Pain - 44%

On the other hand, 78% of respondents were not misdiagnosed. Their symptoms were correctly identified as symptoms of depression. A few were misdiagnosed with the following conditions :

Bipolar Disorder | High Blood Pressure | Neurosis | Chronic Fatigue | Meningitis| Schizophrenia

Patient Testimony: misdiagnoses

"For a very long time, my pain was not acknowledged. For my doctors, it was all in my head. It was my psychiatrist who revealed the truth."

"When my shrink was on leave, another shrink misdiagnosed me with bipolar and hospitalised me. For a year I took Depakote, which had an impact on my quality of life."

"It wasn't really a misdiagnosis since I initially came in complaining of nausea, stomach pain, loss of appetite, etc. It was only after I started to acknowledge my stress and insomnia that I broke down and admitted I was depressed."

"I was suffering from digestion problems, I was sick every evening and at night (diarrhoea, nausea, stomach cramps ...). I went through a number of tests but they never found any cause for alarm. But, I was having anxiety attacks every evening and night. The first symptom of my depression was my indigestion."

Being diagnosed with a chronic illness can completely upend a patient's life. Everyone experiences the fact that an illness will be long-lasting in a different way: some are relieved to put a name on their illness and start treatment, others feel frightened or shocked. The majority of depression patients were expecting the diagnosis. Around 57% of patients had done research on the Internet beforehand, which might explain this number.                                     

 It wasn't a shock, I was expecting it - 48%

 It was a relief - 24% 

I was scared - 20%

It was a shock - 15%

I didn't feel any way in particular - 17%

I don't remember - 13%

The role of the health professional who delivers the diagnosis is extremely important. Sometimes, a patient didn't feel sufficiently listened to or informed; others are grateful to their physicians for accompanying them in a difficult moment. For Carenity members living with depression, most saw the health care professionals they came into contact with as allies. Patients especially appreciated a calm doctor who took the time to explain the illness to them.

My physician was:

54% - Very calm
46% - Suggested some sort of emotional support
45% - Was empathetic 
45% - Took the time to explain everything for me

12% - Seemed to be in a hurry
11% - Seemed unconcerned
10% - Was cold and distant
5% - Used a lot of hard-to-understand or scientific jargon

Patient testimonials: the moment of diagnosis

"After listening to my story, the psychiatrist put me on antidepressants, it was only then that I realised I was depressed. But he never gave a name to my illness."

"They were pretty clear about the diagnosis, and gave me a lot of detailed explanations."

"When she saw me walk into her office, she immediately said: You need some help! You can't go on like this." We looked for psychiatrist together; she promised me that if I didn't feel comfortable with the first psychiatrist, no problem, she had other addresses. She asked me if there was a history of depression in my family. Actually, there is...."  

"My physician listened to me carefully, and then gave his diagnosis: severe depression and hospitalisation was needed."

Following their diagnosis, 31% of patients felt relieved to finally have a diagnosis and 13% determined to fight the disease. However, only 7% felt confident about the future. 47% felt anxious, 38% lost, 18% angry, 32% desperate and 38% discouraged. Loneliness was also often a problem, with 49% feeling alone, and 42% feeling misunderstood by those close to them.

Many thanks to all the participants of this survey who took the time to share their experience to help improve depression diagnosis for other patients!

"We still need more explanations about the illness. And what we should expect as far as symptoms and treatment side-effects."

"Don't automatically prescribe a treatment, without explanation or thought."

"The most painful thing is not getting diagnosed because you start to doubt your sanity and you can't get any help or treatment. You feel helpless and misunderstood."

"I would've preferred to be sent to a shrink before being put on medication. Even if, at the end of it, the meds helped a lot."

"I appreciated the fact I was seen right away but, I was put off by the standoffishness of the nurse at the mental health clinic."

"The role of a physician should be to take the time to explain in simple terms and not give false hopes. My doctor was great because she was very conscious of the limits of her role as a GP... and what she could and could not do for me and my pain. She referred me to a specialist, but was always ready to hear me out."

"More than anything, a doctor should never give out a diagnosis with condescendence and no empathy. That just makes us even more disgusted with human nature, with life in general. Some psychologists just don't know how to give out a diagnosis. You just want to slam the door behind you and on life in general."

Do the results of this survey line up with your experiences? Why not share your own experiences with other members in the comments below?