Syndrome VS Disease
The Stress of Invisible Disabilities
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There is a lot of mis-understanding about the word, Syndrome. Far too many people think that it means something that is less than a "disease" or is somehow, lets be blunt, downright phony. FM is classed as a syndrome.

There is a major mis-understanding in the public mind, of what the word syndrome itself really means. FM, along with many other ailments, is an invisible disability that has few obvious signs, which further complicates the matter.

There are lots of things that are classed as syndromes ... the word just means a malfunction of some biological process, generally a group of things, that the medical society doesn't know the direct cause of, but one that they can easily identify by a given grouping of signs. In some cases, aliments are so called, even when they do know the base line cause. But they have so many alternative factors or alternate causes, that they can't pin it down to ONE and only one thing as a cause, so they are still called syndromes.

"The term syndrome refers to the association of several clinically recognizable features, signs (discovered by a physician), symptoms (reported by the patient), phenomena or characteristics that often occur together"

Another word commonly mis-understood that means the same thing and is often used interchangeably, which is a disorder.

"To avoid confusion of terminology the word “disorder” is often used to refer to disruption of some biological process when no underlying classical pathology is known. The term “disease” is reserved for a known patho/physiological process"

Understand, nowhere does it say, that a syndrome is somehow less real than a "disease." It only means that the medical profession is having to admit ignorance on what, in exacts, is the direct one to one cause of the problem.

Examples of Syndromes:

AIDS (Acquired Immune Deficiency Syndrome)
Is the final and most serious stage of HIV disease, which causes severe damage to the immune system. To which no one in their right mind would call fake, given that AIDS is a death sentence.

Carpal tunnel syndrome:
(CTS) is a common and often disabling condition most often associated with data entry and general computer use, but it can affect anyone who performs repetitive hand motions. CTS occurs in women more often than men and is a relatively common temporary complication of pregnancy (due to fluid retention). It also occurs frequently among people with rheumatoid arthritis or diabetes. Anyone who has this, knows that it's very real.

Downs syndrome or trisomy 21 is a chromosomal disorder:
Everybody knows what Downs is right ? Would anyone dare say that this birth defect is somehow faked ?

Fetal alcohol syndrome or FAS:
Is a disorder of permanent birth defects caused by the consumption of alcohol during pregnancy, also equally damaging and obvious.

Gulf War syndrome (GWS) or Gulf War illness (GWI):
is an illness reported by combat veterans of the 1991 Persian Gulf War typified by symptoms including immune system disorders and birth defects. ( and while it doesn't say it here, it has also caused deaths. )

Premenstrual syndrome (PMS):
There is hardly a woman alive that escapes this one and she would bop her doctor upside the head if he DARED try and tell her, that her pain is faked.

Reye's syndrome:
Is a potentially fatal disease that causes numerous detrimental effects to many organs, especially the brain and liver. It is associated with aspirin consumption by children with viral diseases such as chicken pox. ( too many have died over this one to even consider calling it fake ) and 1000s more..

Pull up the word syndrome on any search engine and you are in for an eye opener, of just how many things that the common man thinks of as "diseases", that aren't ! Yet, to many many people, some doctors included, syndromes get classed as some kind of imaginary illness. It's often a matter for hot debate in the medical community.

However, I think it fair to say that calling something a syndrome, does not mean it's not real, given how many of them can lead to death. I think it would be hard to even begin to say that someone's death is somehow faked, because they died of something classed as a syndrome.

Now, almost no one would dare call any of the above fake, yet they are are syndromes. So perhaps it not just the idea of calling them a syndrome or disorder that is the problem then is it ? 

There are levels to the social mind, and that seems to be, that those syndromes that are not fatal and that have little to no blood work or X rays to "prove" that they are "real" who get classed in the fake dept. In other words, ones that lack definitive lab tests that we can point to and say.. here, here is why this is happening.

Well, if we could do that in all cases, they would likely be called diseases now wouldn't they? As we could point out the exact causative factors.

Certain Syndromes are often considered fakes:

The ones that seem to get the worst press, are those that can be mimicked.

Can some of them be faked? Of course there are some that can be faked. However, is the fact that there are those who do try and fake out their doctors, and society at large any reason to assume that anyone who has a syndrome, is a fraud? Not hardly.

People who fake diseases have what is called, Munchausens syndrome. ( there is that word again, even for this we have to call it that, since we are not sure why it happens ) Which is a psychiatric disorder in which people, fake disease, illness or psychological trauma, in order to draw attention to and or to gain sympathy for themselves.

This, unfortunately, is what many people think is happening in the case of people with certain syndromes. That since we don't have a "disease" it must be fake and we are just looking to draw attention to ourselves. Now, to assume that everybody with a syndrome has a psychiatric disorder, is beyond any kind of sensibly.

When I was diagnosed with FM for example, up to that moment, understand something ... I had NEVER heard of it. Didn't know a thing about it ... so anyone even trying to claim that I walked in to the doctors office, looking for such a diagnosis just to get attention, is being plain ridiculous. It would be extremely difficult for me to match, nearly 100% I might add, the signs of a disorder whose symptoms that until that moment, I knew nothing about, now wouldn't it?

The same is true of a good 75% of folk who have FM ( according to the last survey. ) That up to the point where some doctor finally put all the parts together and said to us .. Ah ha.. you have FM, most of us didn't know a thing about it. So faking it? How may I ask? To fake something, you need to know exactly what it's all about, what signs to show, etc. Which would be pretty hard to do if prior to that moment, you had no idea what they were.

We become expert in the disorder, only AFTER the fact. Quite frankly as we are forced to ... since we are often left out in the cold with little treatment or understanding by many in the medical profession, as the general public are not the only ones who often consider certain syndromes, to be fake. 

That is finally changing, thank goodness, as most doctors accept it as a medical reality now. But it has been a long, slow and hard fight that is NOT OVER... at least, not yet.

Invisible disability:

So, there are only certain ones that get set out as bogus in the common mind ... my personal thought is, it's not that FM is a syndrome that is the problem, is the fact that there are very few commonly used lab tests one can point to and say ... here is what is causing the problem, or pain. There is no wound to show, as it were. It's signs are more subtle and hidden from common view, but this does not mean not real. it just means, it's not obvious to the un-trained eye.

There are many Invisible disabilities. "An invisible disability is a disability that is not (always) immediately apparent to casual observers; that is, it is not visible to the naked eye."

A few statistics on the matter:

About 10% of Americans have a condition which could be considered an invisible disability.

* Nearly 1 in 2 Americans (133 million) has a chronic condition of one kind or another. The most common chronic conditions are: high blood pressure, arthritis, respiratory diseases, and high cholesterol.

* That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.

* 96% of them live with an illness that is invisible. These people do not use a cane or any assistive device, and may look perfectly healthy.

* 25% of people in the U.S. with a chronic condition have some type of activity limitation.

* 60% are between the ages of 18 and 64.

* 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases.

Kind of a scary thought isn't it? To realize that every other person you see, everyday, may have some kind of chronic condition. And that one in ten, have some sort of invisible disability.

"Persons with some kinds of invisible disabilities, such as chronic pain, may be accused of faking or imagining their disabilities. People can also misunderstand and sometimes mistake illness or impairment as something else. For instance, one might feel animosity towards a person who takes an elevator to go up one floor, assuming they are lazy, without realizing that the person has an un-obvious disability which makes it difficult for them to climb stairs (such as a knee problem or a lack of depth perception)."

Deafness, is an invisible disability for example, until you try and talk to them and realize they cannot hear you. As a former teacher of the Deaf, I heard all the horror stories of people who got hurt, abused, or even killed over this simple fact. If you don't believe that, imagine for one moment a police officer yelling at someone's back to 'stop or I will fire.' And then check the statistics on how many Deaf persons have been shot and killed by the police by mistake, for the simple reason that their inability to hear is not obvious.

Social support is crucial:

One of the biggest problems that I see with those of us with syndromes and invisible illness, is the almost total lack of social support on site link. We tend not to get the support we need. People with an obvious disability tend to get much more support, or at least more overt social consideration.

"Most people are often more than eager to help someone with an obvious disability, but there is a reluctance to make accommodations for people who have hidden conditions, who often suffer a great sense of loss for all of the things they can't accomplish because of their illness."

Those with hidden illnesses are often are accused of malingering, as I said before, but what you may not realize is, this hurts ... and I mean that quite literally. Consider it, how would you feel if some of your friends and family said to you, that it's "all in your head" when you can barely move due to the pain ? 

Or they want you to prove to them your legitimately ill, which, since you cannot do so to their "satisfaction" meaning you can point to some test or other, they conclude it must be bogus and you are called a liar to your face. And of course, since your not, you stress over this accusation.

This lack of support and constant demand for acceptable validity, makes for a lot of distress and like any other bad stress, as it is well known, can have an effect on your immune system and how well the body handles pain. Your muscles tense when your stressed and this makes the pain you already have ... worse. It becomes a vicious cycle, of pain causes stress, which causes more pain. But in our case, all too often, the stress is being imposed by something outside ourselves. See Stress and FM on site link

Worse, if you even listen to these accusations and start asking yourself, "are they right ?" This is not only not helpful, it is yet another means of doing yourself damage. As this is just denial of your body's very real limitations and leads to more pain, as you try pretend that everything is normal. "Trying to pass" on site link, for a normal is an exercise in pain and futility, as anyone with a disability who has ever attempted it, knows.

Your body is not healthy and pushing yourself to try and behave as if it is, just means setting yourself up for the cycle of "push and crash on site link" as it's commonly called. Which is where you are doing more than the body can tolerate, which intensifies your symptoms and you crash and burn.

So, it's bad enough that the pain and disability has taken a good part of "normal" life away, we are further handicapped by a prevalent social attitude that feels that our illness and by extension, ourselves as people are less than legitimate. "There’s a social stigma attached to chronic illnesses, as if health is some sort of indicator of moral character."

We tend to be shuffled off into the no mans land of those who are lazy, who just want to sponge off of others, or those who want pity. This is not even rational, or backed up by any statistics. In the case of FM for example: given as most of us were, before the illness hit, Type A, very driven, on the go all the time, very self sufficient personalities. In fact, that correlation is so high, there are those who think that type A's are at a much higher risk for FM.

None the less, we get told that we are not legitimate. That we are lazy malingering parasites. It's a mind set, one that says, "you don't have a real disease", it's just a "syndrome." And since you look fine, therefore you ARE fine and any attempt to say anything to the contrary, is often met with overt hostility on the part of the accuser. ( see You look fine on site link)

Some will say they are being "cruel to be kind", that they are trying to "force" the person back into life and health, for "their own good" of course. However, I have seen far too many that failed in the kindness department and are just plain cruel. Their comments are riddled with sarcasm and derision, to the point where the person with the disability, tends to withdraw from many forms of sociability, as it can be just a gauntlet of pain, both mental and physical.

No one should have to fight both a disability, and being socially ostracized, at the same time. Even where the disablement is perfectly visible.

Example: A proposed bill in 08 stated, that restaurants will be required to refuse to serve obese people. Which is just appalling. What obese people don't have enough stress in their lives, that now they will be forbidden the simple act of eating in public? Yet, some so called, well meaning people in the health department honestly tired to create a law, that demanded just this, for "their own good". This is just one more in a long series of mental mind sets, of being "cruel to be kind", which totally misses the mark of any kindness.

An act to prohibit certain food establishments from serving food to any person who is obese, based on criteria prescribed by the state department of health; to direct the department to prepare written materials that describe and explain the criteria for determining whether a person is obese and to provide those materials to the food establishments; to direct the department to monitor the food establishments for compliance with the provisions of this act; and for related purposes. Be it enacted by the legislature of the state of Mississippi:

Just to show you, that no, I am not kidding :( this was an actual bill, placed before the house, in the state of Mississippi. It died in committee in less than a month, thankfully.

But this is the actions of outsiders, who don't have the problems they are deriding, trying to pass judgments on those who do. The bottom line I have to say on it ? Walk a mile in my shoes, before you even attempt to voice an opinion on my problems, or anyone else's. Heaping even more stress on our lives, is not helping. If you honestly want to help, do not make it harder for us.

So to sum up, syndromes/disorders, are just problems we don't yet have a definitive answer as to why they happen yet, which does not negate their validity in the slightest and just because you can't see someone's disability, doesn't mean they don't have one.

And lastly, if you do not have an honestly informed and rational opinion about someone's disability ? I will quote a thing here to answer that " it's better to keep ones mouth closed and be thought a fool, than to open your mouth and remove all doubt "