Why doesn't people believe in invisible illnesses?

[lauluce]

I was searching the web and the forums for some sort of discussion or analysis of the motives that lead people to not believe in the existence of invisible illnesses such as ME/CFS and others, but I couldn't find much, so I started this thread. What kind of mental processes lead people to not believe that a person is suffering from a disease which has no evident objective manifestations?
I'll start by proposing the following: when a person is told by another about suffering from a terrible, yet not visible or objectively detectable disease, they unconsciously choose to not believe in what they¡re being told because believing it would imply believing that he/she , or his/her loved ones could also became affected by said disease, and they try to ignore this terrible fact by all means, thus convincing themselves that they're being told is a lie or is somehow false. This would be an innate and unconscious/involuntary coping mechanism of the human mind to safeguard itself from the noxious anxiety generated by harsh external realities. What do you think? Do you know of any study conducted on this behavior of disbelief?

 

[Abrin]

What kind of mental processes lead people to not believe that a person is suffering from a disease which has no evident objective manifestations?

My experience in North America it is because the medical profession declares anything that they can't identify to be all in people's head. If you have the medical professionals dismissing invisible illnesses what chance do we have for the general population to accept it?

 

[andyguitar]

I think the biggest problem is the term "Chronic Fatigue Syndrome".

 

[borko2100]

I think maybe because they have never experienced it themselves.

I am guilty of this myself. I used to think people who are depressed are so because of their own actions, ie. it's their fault they are depressed. This completely changed when I started experiencing severe depression myself. I realized that for some people this is a legitimate condition that they have no control over.

People who have never been chronically fatigued or ill, might feel the same way towards people with ME/CFS. They might think people with ME are just lazy, and they could just overcome their condition by sheer willpower.

In my opinion, in order to truly emphatize and understand diseases like depression, ME, etc. you need to have experienced what they feel like yourself.

 

[voltaire]

People accept cancer, or MS, but they think CFS is BS. It part of the overall frustration with the condition. My friends dont accept it either. Its always, "just get up and go out, you will feel better"

 

[Jpac]

There are many reasons I believe...here are a few.

1. Almost everyone at some point in their life experiences the same symptoms we do. It’s just temporary, they go back to normal, we don’t. We are stuck in this cycle. So they think they understand.
2. In an insurance driven capitalist society, the system just can’t pay for ailments they can’t categorize. Our symptoms are so “all over the place” and vague that it never points one direction. Basically $ drives the narratives. If a doctor doesn’t understand...how could a coworker or family member??
3. We have to look inside and be honest with ourselves. It so frustrating once you have chronic fatigue, however how would you respond if you never had it and someone was telling you the story. TBH, I would probably say “rest, eat right and exercise”.

I decided to respond to this post because for me it’s the worse part of the disease. No one believes

 

[Blue Jay]

I decided to respond to this post because for me it’s the worse part of the disease. No one believes

And because we know no-one believes, we are often hesitant in our explanations - especially if we're feeling ill at the time. We begin to expect blank stares and scepticism.

 

[Wishful]

My guess is that the degree of belief in such diseases correlates with what kinds of diseases the individual has experienced directly, and to a lesser extent, indirectly. A healthy person may have only experienced brief periods of mild illness, so they assume that everyone should follow the same pattern. Even worse: if the healthy person has faked illness for some personal benefit, they'll assume that others are faking it too.

Another problem is belief that the medical system thoroughly understands the human body and all possible malfunctions. Thus any 'real' disease has tests and treatments, and any that don't have tests or treatments are imaginary.

I think there are a lot of reasons why many people believe or don't believe something, and the answers in this forum will only cover part of them. An official clear theory for ME and an official diagnostic test will only reduce the number of people who don't believe, but not drop it to zero. Humans don't all act rationally all the time.

 

[Hip]

What kind of mental processes lead people to not believe that a person is suffering from a disease which has no evident objective manifestations?

I have long held an (unproven) theory that people who have less empathy (the ability to tune into and understand another's mind) are more likely to disbelieve patients with invisible diseases like ME/CFS.

There are actually online personality trait questionnaires which can gauge empathy, and I always thought it would be fun for ME/CFS patients to give these empathy tests to friends or relatives who disbelieve in their ME/CFS, and compare the empathy results to friends or relatives who are more believing and understanding.


Empathy is not the same as sympathy: sympathy is offering emotional support to someone in need of it; whereas empathy is the ability to tune into and understand other minds, almost like having Xray vision that can peer into another person's mind. Everyone has some degree of empathy, but some have more of it than others.

I think someone with good empathy would be better able to feel the mind of an ME/CFS patient, and thus be able to appreciate the many miserable and debilitating symptoms that ME/CFS patients face.

That's my (unproven) theory anyway.

 

[lauluce]

There are many reasons I believe...here are a few.

1. Almost everyone at some point in their life experiences the same symptoms we do. It’s just temporary, they go back to normal, we don’t. We are stuck in this cycle. So they think they understand.
2. In an insurance driven capitalist society, the system just can’t pay for ailments they can’t categorize. Our symptoms are so “all over the place” and vague that it never points one direction. Basically $ drives the narratives. If a doctor doesn’t understand...how could a coworker or family member??
3. We have to look inside and be honest with ourselves. It so frustrating once you have chronic fatigue, however how would you respond if you never had it and someone was telling you the story. TBH, I would probably say “rest, eat right and exercise”.

I decided to respond to this post because for me it’s the worse part of the disease. No one believes

I agree with you, it is certainly the worst part of the disease, at least for the ones who don't have an extremely severe form of it. I can work some hours from home with the help of my mother, who takes care of the house and specially food preparation

 

[YippeeKi YOW !!]

I'll start by proposing the following: when a person is told by another about suffering from a terrible, yet not visible or objectively detectable disease, they unconsciously choose to not believe in what they¡re being told because believing it would imply believing that he/she , or his/her loved ones could also became affected by said disease, and they try to ignore this terrible fact by all means,

I proposed this at greater length (naturally ) about a year ago in another thread. People are terrified of illness, generally, and illness that is so invisible to the naked eye, so uncontrolable, so untreatable, so essentially hopeless in its continuous destruction, would affect them the way a diagnosis of cancer 75 years ago would have: death sentence, run, don;t walk, to the nearest safe place.

Prefereably one with ice cream.

When people are confronted with something that isnt understood and is, for the most part, untreatable, it terrifies them. It rips apart the fabric of their carefully constructed, safe little cocoon, where " ....those things ...." happen to other people, not people they know not people in thier lives .... not for God's sake THEM !!!!!

The threat to them is evident. And the answer is to not believe it exists.

I think the biggest problem is the term "Chronic Fatigue Syndrome".

I agree. For one thing, it took Drs almost 2 decades to sort of accept it's existence and try to treat it, usually with anti-d's, anti-anxiety meds, antibiotics, etc, which of course were only minimally, and temporarily, effective in covering up the symptoms, the aim of most allopathic treatments ....

So rather than admit they'd failed in correctly establishing the etiology of CFS, they slipped back into the " .... doesn't exist, all in their heads, we did everything we could ...." mode, and we've been there ever since.

And then there's the stickiness of that 'syndrome' thing, which usually refers to a bunch of hard to connect and seemingly unrelated symptoms that are almost always viewed as idiopathic in origin ...

I think ME is a much better description of the disease itself and where it might originate, or at least keep a vacation or second home....

In my opinion, in order to truly emphatize and understand diseases like depression, ME, etc. you need to have experienced what they feel like yourself.

That's ever been the human condition. We resist what we dont understand, and we can only understand what we've experienced existentially, personally, and directly, ourselves. We can, to a large extent, thank The Age of Enlightenment for that .... if you cant prove it logically, if you cant actually touch it or see it, it doesnt exist .....

People accept cancer, or MS, but they think CFS is BS.

For one, cancer and MS are fully accepted by the medical community. And they both have very visible physical symptoms.

And it's hard to find anyone today whose life hasnt been touched, however distantly and tangentially, by cancer. It's endemic.

Another problem is belief that the medical system thoroughly understands the human body and all possible malfunctions. Thus any 'real' disease has tests and treatments, and any that don't have tests or treatments are imaginary.

Yeah, totally. It's the ancient logical syllogism: Boys have heads. Cabbages are heads. Therefore, boys are cabbages.

I have long held an (unproven) theory that people who have less empathy (the ability to tune into and understand another's mind) are more likely to disbelieve patients with invisible diseases like ME/CFS.

That's an absolute given.

But even generally unempathetic people will respond if something hits close enough to home: if your mother dies of COVID, then your wife, then your child, you begin to release the concept that it's all a hoax. And if you start coughing in a dry, hacking, endless throat scorching stream and running a temp of 103, wellllll ......

Well, usually. Some people are mean, hard cases .... I could mention a pretty visible example, but the mods have been patient with me and I dont want to stress them unnecessarily ....

EDIT ..... if typos were money .... well I'd still have this crummy little drab blowhole of an illness, but I'd be able to find exciting new ways to distract myself from its many, tedious, grinding, unpleasantnesses ....

 

[lauluce]

I proposed this at greater length (naturally ) about a year ago in another thread. People are terrified of illness, generally, and illness that is so invisible to the naked eye, so uncontrolable, so untreatable, so essentially hopeless in its continuous destruction, would affect them the way a diagnosis of cancer 75 years ago would have: death sentence, run, don;t walk, to the nearest safe place.

Prefereably one with ice cream.

When people are confronted with something that isnt understood and is, for the most part, untreatable, it terrifies them. It rips apart the fabric of their carefully constructed, safe little cocoon, where " ....those things ...." happen to other people, not people they know not people in thier lives .... not for God's sake THEM !!!!!

The threat to them is evident. And the answer is to not believe it exists.

.......................

thanks for the detailed reply!!

 

[YippeeKi YOW !!]

thanks for the detailed reply!!

Thank you for not thinking it was long winded ad boring ....

 

[Rufous McKinney]

Thank you for not thinking it was long winded ad boring ....

Is that an uncorrected typo??

I generally agree most are terrified by illness, the notion of it, they view somehow some bad karma showed up. It really upsets white board people...Every Day in Every Way I am Better and Better. Repeat, Rinse. The book- When Bad Things Happen to Good People- gets at some of the dynamic of this.

I'm covered in objective physical symptoms. Nobody you talk to- even gets to the stage of asking what are the symptoms? If they think "tired chronically" is the symptom- we have 100s of physical symptoms and many could be measured or observed but nobody does.

Insurance: sells us the notion that if one becomes ill, there are treatments. So we've been sold something that in fact is a lie. I literally should have just paid my own doctor bills. I'd have just tons of money now.

 

[ruben]

I think the biggest problem is the term "Chronic Fatigue Syndrome".

I think this is true too. If you had a sickness and diarrhoea bug for example, yes you'd be lying around at home. However you wouldn't describe yourself primarily as being tired. I see myself as being ill, of which tiredness is but one symptom. Forum members on here from the UK might be interested in a series on BBC at the minute called "The diagnosis detectives"

 

[Pearshaped]

I always thought that if you are ill,really ill like we are- it could be prooved anyway and then medical care and disability-„benefits“ is no problem.I didnt know that there are ilnesses like this which are ignored completely.So,back when I was healthy,if anyone had told me that he is very ill but doesnt get disability,I must admitt I would not have believed him to be this sick..little did I know..

 

[Jpac]

I always thought that if you are ill,really ill like we are- it could be prooved anyway and then medical care and disability-„benefits“ is no problem.I didnt know that there are ilnesses like this which are ignored completely.So,back when I was healthy,if anyone had told me that he is very ill but doesnt get disability,I must admitt I would not have believed him to be this sick..little did I know..

That’s really the heart of it! We trust in a Medical system and a society that has so much experience. It’s all a warm blanket until you run into this disease. Then you realize in 2020 you are on an island. First time it hits you...it really hurts.
This site is great(in a sense) because it gives validation to the hurt...physically and emotionally. But I winder, does validating the disease make it harder to find a way out...

 

[Rufous McKinney]

This site is great(in a sense) because it gives validation to the hurt...physically and emotionally. But I winder, does validating the disease make it harder to find a way out...

For me, medical betrayal set in as a child. . Then I witnessed the malpractice applied to my mother when I was in my late teens. That was 50 years ago.

I'm surprised so many people think western medicine would actually help you. I will give western medicine One Point for the Appendectomy that saved my husband's life. 2 points for polio vaccine.

 

[YippeeKi YOW !!]

Is that an uncorrected typo??

I know . SHOCKING !!!

I was so tried and brain-clogged that if I noted it, I wasnt aware ....

PLease deduct 3-5 points from my final score ....

 

[BrightCandle]

The world is choke-full of people that can see a video of people on ventilators in Italy and hear hundreds of accounts of a viral infection like Covid-19 and still consider it a hoax, they just aren't all there in the head. The amount of modern society vulnerable to believing conspiracy theories is increasing at an alarming rate coinciding with what appears to be fanatical religious and far-right conspiracies. So within all that, ME/CFS has an even bigger mountain to climb with symptoms that patients can describe but with only poor tests to validate a few of their claims that most couldn't understand.

There is a disease in our culture in the west that is rooted in being quite anti-science based on a persons individuality. Our lack of social responsibility has a huge range of consequences of which believing others and the evidence is kind of a low down priority. It genuinely wouldn't matter if ME caused us to grow horns it would still be dismissed by quite a lot of people. The fact that doctors have been increasing covering up their falsified studies and doubling down has only aided those inclined to believe that everyone lies. It's a toxic cultural mix that has resulted in denying other peoples experience with illness. We have a cultural disease that has spread very widely and I am now convinced it's unlikely we and other invisible illnesses get sufficient research funding and then treatment until that cultural disease is fixed.