PARANOIA

There has been some discussion in comments to this blog about paranoia. Paranoia is defined as being an unreasonable fear, not based in fact. When there are facts to support the claims, it’s not paranoia.

On the other hand, there are those who ignore facts.

Case in point: a member of an e-group who suspects that any disabled person who has joined that group since I left is me (never mind that the topic of the group is of special interest to the disabled). As "evidence", she points out that two of us posted to related groups at the same time; but her assertion requires that she (and her readers) ignore the evidence that we were posting from different IP numbers. If you have only one phone line and no DSL/cable connection, it is impossible to have two IP numbers simultaneously, and that’s an indisputable fact. But don’t confuse her with facts, her mind is already made up.

She’ll make up whatever "facts" she needs to fill the holes in her case, including asserting that I wanted to replace the doctors’ proven treatment with an unproven one, when, to the contrary, the research shows the treatment they offered is useless for CFS and the treatment I requested is what’s recommended by the experts. She knows her readers are highly unlikely to read the research reports for proof that what I wanted is not dangerous or experimental; in fact, the consulting specialist asked years later "what would it have hurt?" to give me what I asked for to see if that helped. It’s FDA-approved for one of my symptoms and millions of people (including many CFS patients) take it; several years later, I finally got a prescription for it, and it did help.

The poster in the comments here similarly assumed what was necessary to build her case, rather than asking questions that would elicit the actual facts that would prove her assumption was wrong. I was repeatedly strung along with empty promises to ensure I missed deadlines, and because I trusted my doctors to eventually do the right thing when I’d proven that their first instinct didn’t help, I didn’t suspect anything until it was too late to meet those deadlines.

One fact the accusers would like to deny is that I have the documents, including sworn statements by my doctors, that support my statements that doctors refused to accept prior expert diagnoses, didn’t know what they were doing, falsified medical records, and left me more disabled through their refusal to advise me that I would be better off with another doctor. The evidence is there for anyone who’d like to see it for themselves.

Nor is it suspicious that I had trouble with a number of doctors. Statistically, nearly 4-in-5 CFS patients report problems with disbelieving and incompetent doctors. Moreover, all the doctors I had problems with were in the same medical group, and many were a professor and his students. If the professor teaches his students the wrong approach to a disease, it is to be expected that the students would make the same detrimental recommendations; how would the student know any better?

The fact is, I’ve since talked to the head of the second CFS support group in town, which I only found out about afterward, and been told that every patient who’s been to that medical group has reported the same problems I had with them. Unfortunately, I made a decision based on the facts available to me in Fall 2000, and can’t turn back the clock to factor in the new information that they are known to be incompetent in dealing with CFS. If I could, I’d be able to get the proper treatment early enough to get me back to work in a few months, and you wouldn’t be reading this blog, but the specialist tells me the damage is permanent.

The fact is, the California legislature enacted a new law telling doctors to keep up with new developments; obviously, I’m not the only patient in California who dealt with doctors who had no clue that new research proved the old treatment they were using is useless.

The fact is, the CFS community (via Hillary Johnson, author of Osler’s Web) has the government documents (via FOIA request) supporting our assertions of misfeasance, malfeasance and nonfeasance by government agencies. "On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic." This is not a paranoid fantasy of a group of patient-activists, but based on the government’s own memos.

Yes, for the sake of brevity what I write in support of my claims is often conclusory statements, but in my files I have the doctors’ own words proving the conclusion is fact-based. If anyone would like to read the thousands of pages of documents supporting my statements, they’re welcome to them. They prove, beyond a doubt, that I’m telling the truth that the problem is in the doctors’ heads, not mine. If the problem were truly paranoia, I wouldn’t be so open about offering copies to anyone who wants to see the proof, because the proof wouldn’t actually exist.

Someone reading only those doctors’ typed notes would get quite a different picture of my medical condition from someone who also read the lengthy forms I filled out for the doctors, my diaries, the lab reports, the handwritten notes from those appointments (i.e., before the doctor had the chance to think about how to edit my statements to say what he wanted them to), the outside medical records, and the testimony of friends/eyewitnesses/experts who have no incentive to lie. The next specialist read the medical records and was horrified: he could not fathom that with the pain level noted they provided no pain medication at all. He commented on it without prompting; yet one more person who sees in the records what I saw when I finally read them, and told me he saw malpractice. Another doctor asked "are they trying to kill you?", then answered his own question, "because you’re single, your malpractice claim would die with you" so it would be in their best interest to get rid of me.

Look at the timeline for proof that one doctor is lying. Although I had a perfectly good computer that handled my e-mail and personal word processing needs, I bought a new computer that ran the newest software so I could open other people’s files, started my own business, then partnered in a friend’s internet business, yet the doctor I saw two weeks after paying a substantial sum for website hosting and one week after accepting a large research project testified under oath that I had told him in no uncertain terms that I didn’t want to work ever again. It makes absolutely no sense that I’d be involved in two businesses, contract for a large project, and invest thousands of dollars in equipment, software and advertising, if my goal was to not work "ever again". Who’s lying? Obviously, the person who says I don’t want to work, because I’ve been working steadily ever since. But every time I tried to tell him that I was having serious difficulty doing my work, he interrupted; he clearly didn’t want to hear his assumption was wrong.

There’s not one word written in the file that supports the claim that I said I "don’t want to work ever again", yet years later, he was absolutely positive that’s what I told him; like so many other things, what I said was turned around in his head until he found a version that fit his assumptions. Repeat a lie often enough, and you come to believe it’s true, so he "remembers" something I never said, even without a written note to jog his memory. Or you can get a copy of the expensive advertisement I placed while I was his patient, which proves that for the next six months, there was a weekly announcement to thousands of lawyers and businesspeople of my availability to work; a few months later, I placed an ad in a different monthly publication, proving which of us is lying about my feelings toward working. My ads put my money where my mouth is; he can’t point to anything other than his own false memory to support his version. If I’d actually said it, he should’ve put the exact quote in his records so he could quote it to the judge, and not waited till 5 years later to "remember" it. Actions speak louder than words, and my actions show I was trying to work even at the time he said I told him I didn’t want to.

For 20 years, the trained counselors have been unanimous, that the "symptoms of depression" noted by my doctors playing Amateur Psychologist are those symptoms which would be seen with flu or other physical illness, and the professionals have refused to make the same diagnosis as the amateurs. For a proper diagnosis of depression, there has to be an emotional component: feelings of worthlessness or hopelessness, low self-esteem, suicidal ideation, crying jags – all of which are missing in someone who has fatigue/sleep problems/inability to concentrate due to a fever or virus.

The only self-esteem problem I have is that I have too much self-esteem. Any claim of hopelessness has to look at the facts that in the 20 years since I got sick, there has been not one medication developed for CFS, and many (if not most) doctors still wrongly believe the problem is psychological – Modern Medical Science provides few reasons to be hopeful that a cure is right around the corner. But being realistic that there really is no cure available is not the same as thinking all is hopeless when there are options.

This is the danger of amateurs diagnosing mental/emotional problems. They become so convinced that they are right that they refuse to accept the opinions of licensed psychiatrists that some component required for the diagnosis is missing. In this case, it’s the "unreasonable" part of the equation ... the psychiatrist, unlike the online amateurs, has seen the records that prove my version of the doctors’ actions is accurate and supports my statement that they "done me wrong". Which is the same opinion of those doctors’ actions that I’ve received from several lawyers and other doctors. Are we all paranoid that we all see the same things in the documents?

This is why it is essential that only someone licensed to practice psychology should be allowed to make a psychiatric diagnosis – too many amateurs who think that the only symptom required for a depression diagnosis is sleeping a lot, and the only thing required for paranoia is that the story sounds bizarre, without knowing what other criteria are required for an accurate diagnosis.

Truth is stranger than fiction, and I have the documentary evidence that proves that the only fiction in my case is that written by doctors and judges who refuse to accept that CFS is an objectively provable biological/neurological condition, not being lazy or crazy. They’re the ones who say "don’t confuse me with facts, my mind is already made up" – I’m the one who wants people to look at the facts to prove I’m telling the truth; read the actual medical reports, not the judge’s summaries that claim that even the doctor who says I’ll never work again "meant to say" I was faking, and the actual testimony of the VocRehab experts who say I can’t work, not the judge’s version that says there are plenty of jobs I’m qualified for and no reason to think I can’t do one of them. Read the forms I filled out for doctors’ appointments, and the handwritten notes of what I really said, not the doctors’ typed versions of what they think I should’ve said, with a critical eye to what information disappears or is invented between my own words and the doctor’s typed note. Call and talk directly to me and the doctors, to verify for yourself that we are all fluent speakers of English, so this was not a problem rooted in a language barrier or heavy accents that prevented easy communication; in fact, the handwritten notes confirm that I was understood perfectly, both the virologist and his diagnosis were excised in the dictation.

Demanding that you read the source documents before making up your mind is hardly the action of someone who’s having unreasonable paranoid fantasies that won’t stand up to intense scrutiny of the facts and evidence.

To the contrary, it’s the doctors’ and judge’s versions which won’t stand up to scrutiny when you see how they have repeatedly twisted words, made up "facts", and ignored hard evidence to reach the conclusion they want to reach, rather than the unpalatable truth, that this is someone who never shied away from hard work and still badgers people to this day to help her find a job she can do. The psych professionals have seen the evidence that what I say about the doctors is true, and don’t concur with the online amateurs’ attempts to diagnose paranoia without grasping there’s factual proof behind my statements.

Combine that with the CDC website specifically saying that those tests which show objective evidence of CFS are "unnecessary", and, in light of their earlier memos showing them to be more concerned about saving SSDI and UNUM the cost of benefits than they are about the patients’ well-being, and the paranoia attributed to CFS patient/activists turns to rightful outrage at prejudicial injustice which has cost a million Americans their physical and financial health.

Tags: CFS, psychiatrist, CDC, SSDI, UNUM, paranoia, depression, treatment, cure, health, diagnosis