Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes - A systematic review, 2021, Ko et al

[Andy]

Highlights

• Patients with IBS do not perceive more stigma than patients with comparable illness
• Patients with CFS or FM perceive more stigma than patients with comparable illness
• Patients with functional versus explained symptoms perceive about equal stigma
• Patients with perceived stigma experience negative health outcomes

Abstract

Background
Patients with functional somatic syndromes (FSS) experience stigma which arguably affects their health.

Aim
To determine the presence of perceived stigma and its effects on physical and mental health in patients with FSS compared to patients with comparable explained conditions.

Methods
A comprehensive search of PubMed, Embase, PsycINFO, CINAHL and Cochrane Library was performed to select studies focusing on stigma perceived by patients with irritable bowel syndrome (IBS), fibromyalgia (FM) or chronic fatigue syndrome (CFS), comparing these patients to patients with comparable but explained conditions.

Results
We identified 1931 studies after duplicate removal. After screening we included eight studies: one study about all three FSS, one about IBS, five about FM and one about CFS. We found that patients with IBS did not consistently experience higher levels of stigma than those with a comparable explained condition. Patients with CFS and FM experienced higher levels of stigma compared to patients with comparable explained conditions. All studies showed a correlation between stigma and negative health outcomes.

Discussion
Patients with FSS experience stigma and negative health outcomes. However, experiencing stigma is not restricted to patients with FSS, as many patients with explained health conditions also experience stigma. Whether stigma has more negative health consequences in patients with FSS compared to patients with explained health conditions remains unclear and should be assessed in future research.

Open access, https://www.sciencedirect.com/science/article/pii/S0022399921003603

 

[alktipping]

because nearly everyone has some experience of complaints of the digestive system such problems are readily excepted by others .so of course their is more understanding and less stigma around ibs unless it is from the more simplistic members of the medical profession .

 

[cfsandmore]

The one study Ko et al used for ME/CFS was comparing ME/CFS to other neurological conditions. It was not comparing ME/CFS to other diseases in the body. I think that is an unrealistic comparison.

How it works in the real world.

I have IBS. When I saw the first gastroenterologist he mocked my CFS. It was so cruel my PCP said he would never refer another patient to that doctor as long as he lived.

A couple of years ago the psychologist thought they had won me over and was going to start GET. She handed me an exercise plan that she uses with her MS patients. When I told her I refuse GET because it goes against the CDC advice. She laughed in my face. She looked on her laptop and there in black and white was the updated CDC ME/CFS guideline. She became red from her hairline to her cleavage. She cut the session short.

Another time I was told the reason people with CFS have unrefreshing sleep is because they want to stay up late watching movies. That was the kindness of a therapist. The psyche profession is out of touch with reality.

I could go on and on. Last year, the neurologist billed my insurance for a mental health visit and told me my problem was "just" CFS. Then in the next visit said she had discovered I have Trigeminal Neuroglia. She blamed me for not explaining my symptoms properly. I wondered if all of the scans of my head had anything to do with her discovery. Now after decades of cluster headaches and migraines it seems all of that suffering was my fault because it was "probably" TN all along. I have neurology visits dating back 30 years.

I've never had any doctor mock my IBS.