Sunday, December 2, 2012

Where is the Prize? | Psychology Today

 
"The unwell and disabled life asks nothing more than constant bravery."
 
 
* * *
And if your disability is CFS, no one recognizes the bravery.  It actually takes more to survive with CFS than it does to deal with, say, cancer, because if you have cancer everyone's falling all over themselves to praise you for your courage.  No one says anything like that to me.  No one rallied around to help -- my friends abandoned me.  No casseroles, no offers to help with chores, no charity asking what I need help with.
 
Cancer patients can look forward to a 95% cure if it's caught early, and then go right back to their lives.  CFS has a ZERO percent cure rate.  Oh, some of us go into remission, but the sword is always hanging over your head that if you do too much you're going to go into relapse.  Even when I was in remission, I couldn't go back to doing all the things I'd done before.  I looked pretty healthy at work, but no one saw that I'd go home and collapse, not budge off the couch -- no more hiking in the clean air in the mountains, no more softball, no more volleyball, just work and rest up for work.
 
My dad, a cancer survivor, was healthier at 80 than I was at 50.  When he passed away recently, everyone marvelled that he'd survived nearly 20 years after his cancer surgery.  No one marvels that I've survived more than 25 years with CFS.  No one marvels at how well I'm doing given that Modern Medical Science has nothing akin to chemo to offer CFS patients.  No, they're too busy scolding me for all the things I don't do.
 
No one threw me a 5-year survivor party or 10-year survivor, and if I somehow manage to survive for 50 years with a disease that's tried to kill me several times already, no one will throw me a party for that remarkable achievement either.
 
And I'm too busy bravely battling the disease to organize my own survivor party.
 
 
 
 
 

18 comments:

constance bello said...

Do you ever tire of whining? Might be a huge part of your "fatigue".

jcn said...

If only it was that easy - stop whining and the fatigue disappears - I wish.
Anyway - since when was telling it how it is whining??
I work and pay the price for working - I don't need to tell my co-workers how much - its enough to be able to share about the price with people who are paying a similar price.
However I don't compare - there is no copmarison. My sister died of breast cancer at the age of 52yrs - I'm now 57yrs and glad to still be alive - even with CFS.

CFS Facts said...

"Telling it how it is" is whining when you're not saying what people want to hear.

My point in writing this blog is to let people know that others feel the same way they do; they're not alone. That approach helps a lot more people than those like you telling them to stop whining.

CFS Facts said...

My fatigue is not psychiatric; it's caused by a long-term severe systemic infection, in the same way that someone who has the flu is fatigued. The only difference is, the flu goes away after a few days; this virus never does.

constance bello said...

So you say...

constance bello said...

""Telling it how it is" is whining when you're not saying what people want to hear."



Or, perhaps, what YOU want to hear/acknowledge.



You CFS "patients" often compare yourselves to AIDS/HIV, cancer patients.
Yet for all the years you claim, there is still no tangible, documented, verified confirmation.
But oh yeah... you are the persecuted. Everyone - MDs, CDC, etc. are all against you. For no reason. MDs are arrogant fools, CDC, NIH - all are wicked stupid idiots who live to make you miserable.

Makes perfect sense.
If you have a wared mind, of course.

CFS Facts said...

I acknowledge the thousands upon thousands of research studies showing physical/biological abnormalities in CFS patients. Can you? Or do they also not say what you want to hear?

I have my own abnormal blood tests proving it's not a fignment of my imagination. But, again, that's not what you want to hear.

constance bello said...

Oh yes - your 100 times citd statement of blood work being - and I quote - "off the wall".

But that really hasn't been deemed significant by the MDs you have consulted save maybe one? Two?



It is ludicrous to claim and even sad to believe that medical researchers wouldn't jump at the chance to verify a disease/disorder such as you claim.



But yet.....

CFS Facts said...

"off the charts" (i.e., 10x normal) is not the same as "off the wall". How many doctors have opined on it is immaterial, given that it's a recognized blood test and is so "sky high" that there's no question that it's abnormal. Ask 1000 doctors and they'll all say that there's something very wrong physically for a patient to have the numbers that I do.

But, again, I'm not saying what you want to hear, so you cannot open your mind to the possibility that you are wrong.

"Dunning and Kruger often refer to a "double curse" when interpreting their findings: People fail to grasp their own incompetence, precisely because they are so incompetent. And since, overcoming their incompetence would first require the ability to distinguish competence form incompetence people get stuck in a vicious cycle.


"The skills needed to produce logically sound arguments, for instance, are the same skills that are necessary to recognize when a logically sound argument has been made. Thus, if people lack the skills to produce correct answers, they are also cursed with an inability to know when their answers, or anyone else's, are right or wrong. They cannot recognize their responses as mistaken, or other people's responses as superior to their own."

http://www.psychologytoday.com/blog/evolved-primate/201006/when-ignorance-begets-confidence-the-classic-dunning-kruger-effect

constance bello said...

I acknowledge the thousands upon thousands of research studies showing physical/biological abnormalities in CF'S patients."



Yet you don't find it somewhat strange that the supposed "thousands upon thousands" of research studies you refer to have had little to zero significance to reputable, established people/organizations/researchers (including the pharmaceutical industry) in the very fields knowledgeable in such disorders - any of which would aspire to make a name for themselves in establishing a "break through", a "proof" of your supposed "CFS"?



Oh - sorry - forgot how such institutions, researchers, etc. are against you... for no valid reason whatsoever.

Forgot you are the prosecuted victims.. For no reason, of course..



Let me ask you - tell me one, just one, medical condition that reputable acknowledged researchers failed to establish as a true disorder for as many years as you and yours claim.



And of course we'll keep in mind that, again, you are the prosecuted.

For no reason, of course.

Everyone - simply everyone, from the average Joe to the most respected medical researchers are against you.

Yeah. Okay.

Proclaim again loud and far how you would LOVE o work and be a productive member of society.

But oh - don't forget to cash that disability check you fought oh so hard for.

constance bello said...

"off the charts" (i.e., 10x normal) is not the same as "off the wall". How many doctors have opined on it is immaterial,"

Oh god you are so funny! Talk about wordsmithing!

CFS Facts said...

Researchers can only research what there are research grants for. You need money to perform research, and the government tragically underfunds CFS research. Cancer gets $650 per patient; CFS gets $1 per patient ... and what pittance we get has repeatedly been misused, being spent instead on other diseases. Pat Fero has all the numbers for the past quarter-century; contact her for details.

“The name "Chronic Fatigue Syndrome" was selected by a small group of politically motivated scientists. Their deliberate intention was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine.” –– Hillary J. Johnson

Disability insurance companies and SSDI had just gotten hit with a big whammy of AIDS patients, and a few years later here came this other large contingent of patients who were just as sick, but weren’t going to conveniently die in a few years; since many disability policies say you can only collect for 2 years for psychiatric illness, it was in their best interests to have this disease cast as psychiatric. Away went the old name of Myalgic Encephalomyelitis, which sounds scary, and in came CFS, which could be slurred into psychiatric explanations. And in doing so, made it easier for those who wanted to keep disability payments to a minimum to study psychiatric fatigue instead of systemic biologically-based fatigue. The people in their studies don’t have the same symptoms I do, but in many cases the only symptom required is “fatigue”, which brings in people who DO have psych problems to pollute the research pool, thus producing Junk Science. It’s like saying you’re researching lung cancer but instead studying people with bronchitis and asthma.

As a result of the government’s self-serving refusal to study what would cost the government (SSDI) a lot of money if a definitive blood test were found, much of the serious research into CFS has been funded by patients, who scrape together pennies from their Disability checks, which has made it slow going. I’ve had a few theories for many years, which sound reasonable to other patients, but I don’t have the money to pay anyone to look into them, nor the spare energy to run a major fund-raising campaign to fund my proposed research, so they remain theories.

I have physical symptoms that cannot be explained away by psychiatry: a 101 fever for months on end, swollen glands, abnormal blood tests, cardiac abnormalities. All of which fit the diagnostic criteria for what used to be called Myalgic Encephalomyelitis.

Dr. Daniel Peterson observes "Fact: CFS differs from depression in onset, incidence, major symptoms, attribution and 5 immune variables: there is very little overlap between depression and CFS." Over the years, uninformed doctors, as well as SSDI, have sent me for a number of psych evaluations, which said what the doctors didn’t want to hear: this woman is definitively not depressed.

One pointed out that in order to become a psychiatrist, he had to get an MD degree first, trust him, doctor-to-doctor, what I was describing sounded like a viral infection; it wasn’t what the doctor wanted to hear, so he ignored it and wanted to send me to as many psych evals as necessary to find one who said what he did want to hear.

CFS Facts said...

And, by the way, I DO work. I own my own business. I AM a productive member of society. I found a job I could do from bed on days I'm too sick to sit up, or from the bathroom on days I'm not able to stray too far from the toilet.

But, of course, you can't acknowledge that, either, because that also goes against what you would like to believe about CFS patients merely being too lazy to work.

CFS Facts said...

Constance Bello, is that a bad pun on Constantly Belligerant?

Perhaps you should read the numerous posts in this blog concerning solid research findings rather than just the ones where you think I'm "whining". Educate yourself instead of just verbally abusing patients who suffer quite enough without your baseless and uninformed comments.

CFS Facts said...

PS In this state, verbal abuse of the disabled is prosecuted as a hate crime. Would you like to share your real name and address so that the DA can file charges against you for your hate speech? Not to mention the slander of claiming that I don't work when, in fact, I have been a business owner for many years and the government has the tax returns to prove it.

constance bello said...

So, a "discussion" disagreeing with supposed "facts" you present is now deemed a "hate crime" by you?

Paranoid much?

For the record, my real name is Constance Bello. I would in the health/social services field, though not sure what state you are in.

Andas chance would have it my husband IS a D.A. in our county!
You can add to your criminal complaint that your threat had his office in much laughter.
Such foolishness. You do little to advance your crusade, such as it is.

CFS Facts said...

Portraying legitimately ill patients with the test results to prove it as merely being lazy whiners is verbal abuse. And verbal abuse of the disabled falls within the definition of "hate speech".

And there's no question about it being slander to portray a business owner as being too lazy to work.

CFS Facts said...

That you work in healthcare and hold these beliefs simply proves our point that medical education on this subject has to change.

In 1987, my husband and I described a number of objective symptoms incompatible with a mental illness diagnosis and the doctor told me I just wanted to be a housewife (which I NEVER did).

In 2000, I described a number of objective symptoms incompatible with a mental illness diagnosis and the doctor told me I was just depressed because I didn't like being back in the workforce after the divorce. (Um, I was always the primary breadwinner; I'd never left the workforce.)

Both doctors refused to do the test that would have proven that I was right and they were wrong, preferring to do only the tests that SHOULD be normal in a patient with CFS.

Yet, when I got to doctors who LISTENED to the symptoms instead of leaping to conclusions based on stereotypes, they immediately recognized it as a post-viral fatigue syndrome.

Proper tests proved there was a physical basis for my symptoms, and no matter how adamantly someone wants to insist that I'm faking, those test results prove that I'm not.

As does my insistence on working despite symptoms so severe that I couldn't sit up without passing out.