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Why doesn't people believe in invisible illnesses?

Seadragon

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A lot of us may not look as ill as we actually feel and are. We do not have regular treatment in hospital usually, doctors lose interest when they can't help and whilst we often do not get better and maybe some get worse over time, we do not generally die of this illness. People lose interest after a while because of these things or just never believed you were very ill in the first place.

Agree with other posters also that many people are terrified of illness and like to turn a blind eye to it if they do not live with the affected person and see their day to day reality and when they are at their worst (with crashes for example). And yes, a lack of empathy and understanding by normal healthy people of how this illness feels and that it just continues day after day, month after month and for some patients, year after year.
 
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Forum members on here from the UK might be interested in a series on BBC at the minute called "The diagnosis detectives"
I wish this was a common service once you hit a certain point and a GP had no further ideas. A panel of various experts exchanging theories and trying to diagnose and treat would be awesome. Anything would be better than the sod off you depressed idiot you get from the NHS currently! This is what we all imagine doctors ought to be like and how they would operate but this could not be further from my experience with specialists. Its the followup and driving of the patients diagnosis that I find so alien compared to my own experience with the NHS.
 

lauluce

as long as you manage to stay alive, there's hope
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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.
well said, that's an excellent insight on the issue, this thread is being quite fruitful
 
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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.
The conspiracies merge....my husband, perhaps. a lefty, is very obsessed with several major conspiracies...not much different from the righty- ones.

Alot of this is operating on a subconscious level I suspect. Some days, I really don't know what I think any longer.

The ground beneath our feet is a bit unstable..humans are shaky as a resuilt.
 

Wishful

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Evolution gave us the ability to look for patterns in our environment and to use that to predict hazards and benefits. We also seem to have developed the propensity to come up with easy answers: if there's a problem, it's due to the spirits/gods/magic/illuminati. If your life isn't going as well as you expected, it's not because you didn't bother to learn good financial management habits, or were too lazy to exercise, it's because 'they' are conspiring against you. If there's something that you don't want to do, you can come up with an excuse for not doing it.

For invisible diseases, it's easier for other people (doctors, friends, government) to dismiss it than to accept whatever their responsibility should be.
 

Wishful

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I have had people say to me that they get tired all the time and they seem to think that is all ME is.
If I'm telling someone about my disease, I don't use the term 'fatigue' at all, since I don't consider what we feel to really be fatigue. I may say it's a chronic neuroinflammatory disease, and that it causes mental lethargy and brainfog, or that it alters brain function in various disabling ways. I suppose if someone seemed skeptical about the magnitude of the disability, I might include various technical terms, such as astrocytes and kyunurenines and mention some of the research findings.
 
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If I'm telling someone about my disease, I don't use the term 'fatigue' at all, since I don't consider what we feel to really be fatigue.
Thought I"d add- my doctor is still rather miffed at me for not taking the Modafinil. He has one patient who loves it: therefore he thinks I should love it.

but there are too may symptoms that don't feel better- if I am MORE awake, or MORE alert.

I still should try it again...as I only tried it once but I didn't like that headache. And I - scrubbed the floor actually, instead of just thinking I would do it...in other words- you'll do more than you should- and I don't like crashing.

This illness is not invisible. We just aren't bleeding out, or requiring stitches. Cancer is invisible- mostly...until it gets real bad- and that illness receives Full Commiseration.
 

Wishful

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I think systematic exertional intolerance disease would be a better term
That doesn't fit the core dysfunction of ME either, since I've cured my PEM and tolerate exertion just fine, but I still have the other ME symptoms. I still haven't heard an alternative term for ME that is worth the effort of changing world-wide. Hopefully someone will find what's really going on in ME, which will provide a more useful term.
 

gbells

Improved ME from 2 to 5
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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?
There was a big misinformation campaign by the National Institutes of Health on behalf of insurance companies who wanted to make money denying ME disability claims because of a mental illnesses clause that limited benefits to two years. NIH prematurely claimed it was psychogenic and the insurance companies could deny benefits after two years. No research on a physical cause was funded and a lot of the research money was misappropriated. At one point probably half of the MDs believed it was psychogenic. Then MDs started getting ME, writing about it and evidence for a physical cause was found in two day exercise test response. ME patients organized and protested (see PACE trial in the UK). That made them change their minds.

Read the book Osler's Web by Hillary Johnson.

There still is a lot of discrimination against ME patients in the USA. It is still very hard to get disability benefits, only 13,000 out of an estimated 2 million ME patients are on disability (I am one of them but not for ME, a neuropsychologist diagnosed me with somatoform disease which was an automatic qualifier on the list of permanent impairments-the Social Security Administration fought tooth and nail to deny ME and I had to take it to the Appeal stage which is before the final stage of filing a lawsuit against the government).
 
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lauluce

as long as you manage to stay alive, there's hope
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That doesn't fit the core dysfunction of ME either, since I've cured my PEM and tolerate exertion just fine, but I still have the other ME symptoms. I still haven't heard an alternative term for ME that is worth the effort of changing world-wide. Hopefully someone will find what's really going on in ME, which will provide a more useful term.
maybe we should use a random name, like the name of a city or a person somehow related to the disease? just like diseases where named in the old times
 

gbells

Improved ME from 2 to 5
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you're your own hero... congratulations
Yeah my lawyer said I was very lucky and only 13,000 out of 2 million CFS patients are on SSD insurance (most get rejected). The lawyer said they hate to give disability benefits to younger men because they know the payout period is longer. Persistence was what did it for me plus I got lucky asking a counselor for the neuropsychological evaluation. I really don't care if they diagnose me with the wrong condition as long as they pay my benefits. That's on them.
 
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lauluce

as long as you manage to stay alive, there's hope
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Yeah that's what my lawyer said. They hate to give disability to younger men because they know the payout period is longer. Persistence was what did it for me plus I got lucky asking a counselor for the neuropsychological evaluation. I really don't care if they diagnose me with the wrong condition as long as they pay my benefits. That's on them.
Exactly, I believe the same, I don't care if the give me benefits for damn HYSTERIA as long as they do it.