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Carenity members tell us about their diagnosis of NASH

Feb 22, 2019 • 2 comments

Our members affected by non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH) have graciously told us about the journey with their diagnosis! Symptoms, emotions, tests and examinations, medical care, treatments... read their story with their diagnosis. 
 

Carenity survey of 115 patients in the United States.

Carenity members tell us about their diagnosis of NASH

diagnostic-cancer
On average, patients waited 2 years to be diagnosed and the majority consulted just 1 doctor before reaching their diagnosis.


Fortunately for those suffering from NAFLD, the time period to arriving at a diagnosis was not too long, with the average time being 1-2 years from the initial sign of symptoms. During this period, respondents said that they experienced different symptoms with different severities. However, the majority of patients complained of the following symptoms:

Watery/Oily stools | Nausea | Fatigue | Weight gain | Stomach pain | Pain below ribs | Tenderness | Rashes | Vomiting | Elevated liver enzymes | Water retention

Before the diagnosis: the impact of NAFLD

We asked our members about the impacts the symptoms caused by NAFDL had on their daily life before reaching a diagnosis, and this is what they had to say:

fatigue-chronique Chronic fatigue- 85%

douleurs-cancer Chronic pain - 57%

loisirs-cancer Hobbies and activities - 51%

vie-intime-cancer Love life - 50%

vie-familiale-cancer Family life - 42%

vie-sociale-cancer Social life - 38%

impact-cancer-vie-pro Professional life - 31%

The majority of respondents reported that chronic fatigue had the greatest impact on their daily life before the diagnosis. Fortunately, 23% of respondents reported that only one part of their daily life was impacted by the symptoms prior to reaching a diagnosis. Members in general felt that the symptoms impacted their social or professional life the least.

Before diagnosis, only 21% of patients did their own research on the internet concerning their symptoms. A majority of those individuals reported using websites such as the Mayo Clinic, Healthline and the Liver Foundation, while several reported they did their research by typing their symptoms into Google and going from there.

Many respondents didn’t try any alternative therapies for their NAFLD such as homeopathy, with only 15% responding that they did. However, those who did try alternative therapies reported use of milk thistle, acupuncture, turmeric, dandelion root tea, grean tea and essential oils.

Being diagnosed with NAFLD: what you had to say

For many diseases, the road to diagnosis is peppered with a misdiagnosis/misdiagnoses. However, with NAFLD, only 20% of patients had a misdiagnosis before discovering they had NAFLD.

According to Carenity members, they were most frequently misdiagnosed with chronic fatigue syndrome, irritable bowel syndrome (IBS), fibromyalgia, mental illness, gallstones or an endocrine tumor

Although only 20% of members reported a misdiagnosis, the misdiagnosis did result in causing considerable stress. One member said that they were constantly feeling “frightened for the future” and were in “constant pain”.

The shock of the diagnosis  

How did patients react to their diagnosis?

soulagement-cancer I didn’t feel anything in particular - 39%

peur-cancer It was horrifying - 17%

choc-annonce-cancer It was brutal - 19%

choc-annonce-cancerIt wasn’t a shock, I was expecting it - 15%

diagnostic-cancer-reaction It was a relief - 10%

Finding out that you have NAFLD can be a frightening event, but 39% said they did not experience any particular sentiment whilst 11% of patients can’t remember how they felt at all.


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. The good news is that the majority of Carenity members felt that their doctor took time in discussing with them their NAFLD diagnosis while also being calm and emphatic. The main problem members felt with their medical care was the feeling that the practitioner didn’t care and they they were cold and distant delivering the diagnosis.

Some comments from respondents said that they appreciated that their doctor was "straight forward" while another described the delivery as being “blunt”. Two respondents claimed their doctor pressured them to admit they drink alcohol, when that certainly was not the case.

Fortunately, over all, the majority of respondents had positive feedback regarding their medical care and doctor, with most of them being encouraged to lose weight and make lifestyle changes.

>> Read our article about diet, exercise and NAFLD <<

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43%The doctor was very calm

33%The doctor took the time to explain

23%The doctor was very emphatic 

2%The doctor offered offered psychological support

ressenti négatif

21% - They looked like they didn’t care 

16% -   They were cold and distant

14% They used cold and scientific language

13%They were too fast explaining

 

The patient's struggle when facing NAFLD...

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:

27% of patients felt relieved by the diagnosis, but this was coupled with 43% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 36% of respondents. 

15% reported feeling lost, confused and alone; 17% felt anger about their diagnosis; 15% of patients felt they were being misunderstood; 21% felt discouraged. 

Unfortunately, only 21% felt determined to fight the disease and 3% had confidence for the future while 19% felt despair. 

How can diagnosing NAFLD be improved?

The above statistics about how patients felt following their diagnosis paints a "not so great" picture for those facing a diagnosis of NAFLD. We asked our members how they felt the process could be improved and a lot of respondents said they would have appreciated more support following the initial diagnosis.

More Information

The most resounding suggestion in improving the journey with a diagnosis of NAFLD is to simply provide the patient with more information about their NAFLD, what they can expect going forward, and how to manage it. This is what some members had to say:

"It should be explained what it is and why you have it and what can be done through diet, exercise or meds." 

and

"An explanation about treating it. I got none and had to look it up myself."

Patients want their doctor to, “Bring patients back into the office and explain everything and offer tips to help with it other than just change your diet.”

In brief

Patients feel that their doctor should spend more time explaining to them what NAFLD implies and how they can manage the disease. One member said that they “weren’t aware it was a serious problem” because their doctor didn’t talk them through what was really going on.

Members want more detailed information and support from their healthcare providers, so that they don’t feel lost and discouraged going forward.

diagnostic-cancer

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

Carenity

avatar Josephine O'Brien

Author: Josephine O'Brien, Community Manager UK

Josephine is the Community Manager of the UK with a Master’s in Publishing. She is a strong believer in the power of words and strives to make Carenity UK a comforting, vibrant and informative community for both patients and their families.

Comments

on 3/22/19

The diagnosis was a relief to put a name to the condition, but it also caused a lot of anxiety and worries. A lot of that initial anxiety was caused by the uncertainty of what the condition meant and involved because I felt my doctor that made the initial diagnosis did a poor job in explaining it.

on 12/6/19

I had a similar diagnosis experience. No real explanations, lot's of questions without answers and no real guidance on how to proceed. This sort of bad care is an epidemic for people with NASH. I think some health care professionals see this as a "self inflicted" wound and don't take our pain seriously.

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