A fan letter from the president of a health blogging site:
"I read your blog. You are an articulate writer and rightfully passionate about your topic. Though I am more familiar than most, with the issues surrounding CFS and Fibromyalgia, I learned quite a bit for the time I spent reading."
Then he invited me to become a guest author on his site.
For each person who has complaints about the blog, there are several others who think it’s great, including a couple who’ve invited me to write for their websites. I must be doing something right to be getting those invitations.
Unfortunately, for all the success that Steve’s consortium of activists (me included) are having with getting people to read and send out the annual Request for Congressional Action, there are still those stubborn people who refuse to accept the truth that CFS is caused by a virus, not a screw loose, and still keep telling us to just "stop whining and go back to work".
The problem isn’t that we lack the incentive to go back to work, but that the ADA says we’re not entitled to the accommodations we need. In the real world, it’s not enough to show up at the office, you have to be able to do the work. When you’re having paralytic muscle weakness, you can’t do manual labor, and when you’re having "fibro fog", you can’t do brain work. I’ve known CFS/fibro patients who were so affected by fibro fog that they couldn’t put together a simple sentence; they couldn’t function in a job that requires them to read or to write memos. At my worst, I have had days when I could not remember how to shape numbers and letters – I couldn’t even function in a receptionist job because I couldn’t take a phone message. And that’s not counting the fact that the law says needing rest days during the week makes me "disabled". Technically, 12 years ago when for a few months I had to take every Wednesday off in order to be able to make it to work Thursday and Friday, I fit the court’s definition of "disabled", excessive absenteeism, even though I was functioning adequately the 4 days a week that I was there.
As long as there are people who won’t acknowledge that they’re wrong, that there are objectively testable neurologic and immunologic abnormalities proving CFS is a biological illness, there will be a need for activists to speak out. As long as there are doctors who cling to the idea that post-viral CFS is really just a psychiatric problem that can be cured with anti-depressants, there will be a need for activists to educate them that anti-depressants are useless; anti-virals have been proven to help.
For as long as that takes, I’ll be here.
8 comments:
yadayadayadayadayadayadayadayadayadayadayadayadayadayadayaydaydayadayadayadayadayadaydadaydayada ......................................
Do you know how stupid you sound, SkyGaze?
The facts are the facts and a lot of doctors are going to feel very stupid when they have to accept that they were wrong. Are you one of those doctors who doesn't like hearing the truth and has to kill the messenger?
Would you look that this blog's writer? Doctors are against her. Lawyers. Judges. Even cleaning people (and even the judge in that case had it against the writer it seems). Department of Health (ever heard of a situation like hers before, where they kick a person out for anything other squalid conditions? Me neither. But yet they were against her also. And don't forget the Disability Board. The list is endless. It is clear this woman who claims not to be depressed also has other disorders, acute paranoia most apparent.
And this is who you want advocating for CFS? Or anything?
Than you people have an even bigger struggle than you realize.
For the record, it was decided some time ago to leave the abusive comments in this blog so that people can see the identities of those who will not accept the truth. It's long been said "truth is stranger than fiction."
If any of these verbal abusers would like to provide their home phone number, I can have eyewitnesses call you to confirm the condition of my house before the people who were supposed to clean moved in and the steady deterioration which resulted in them being asked to leave, and the discussions had by that witness with the building inspector whose biggest concern was boxes impeding exit in case of fire rather than "squalor". I can have my lawyer call you to explain to you what she's told me about this judge's prejudices. I can send you copies of the medical records to show every false statement in them.
But, I know that you do not want to hear that I'm telling the truth because it's more fun to call me a liar.
Go right ahead. I know the truth, and many other people know the truth, things they've seen and heard for themselves without having to rely on me telling them. And in the long run, the facts will be exposed that I am telling the truth and that your insults are baseless. And the whole world will see whose name is attached to the refusal to accept the truth.
If you don't believe the reason the police were called to the house, you're free to request a copy of the police report.
After the discussion with the police that I did not KNOW what the Secret Emergency Code is, because I had made it clear that I did not WANT a Secret Emergency Code (more information could be imparted faster in a voice mail), the police concluded that the caller was "a kook" (their word) who made a completely false 911 call.
We had at least half a dozen discussions about her desire for a Secret Emergency Code and my insistence that it was not efficient, so there could have been no doubt in her mind that I never agreed to a Secret Emergency Code because I made it clear more than once that there would be no Secret Emergency Code.
It was equally clear when talking to her after I got home from the doctor and found police in my house that she had designs on front page headlines "Clever Heroine Saves Friend's Life", and actually sounded disappointed that I was fine.
Those are the facts, backed up by the police report. Like them or not, it's the truth.
It is always sad to read thoughts so ignorant that to leave them without comment would somehow give them credibility. I happen to know the lady of whom you write your misguided missives. I have known her for the last 10 years. I know how CFS has ravaged her health and changed her life in ways that those without CFS can never imagine. I watched the condition of her home deteriorate in much the same way when she opened her home to friends that were long on promises and short on performance. In a few months they had cluttered her home to the point where ingress and egress in her home was seberly impeded. When this couple moved out of her home, the wife decided to pay her friend back by making a false claim that she was in danger, knowing full well that she was at the doctor's. The firemen got no answer and broke into the home. I personally talked with the building inspector and he stated that the boxes left by her "friends" needed to be cleared from the pathways to every window a nd exit before he would allow her back into the home. After this ungrateful, vengeful "friend" called the building inspector the next time, he and I had a talk and now there is a red flag alerting all staff in the building department that this woman was not to be believed if she ever made another complaint. I have made this comment much longer than I intended. I wanted to set the record straight. I can tell you that my friend has told you the truth in this blog. For those of you intelligent beings, this should be enough. For the truly ignorant, well ... 99 percent of the population cannot expand their awareness, so you are not alone.
Brian
This is a common and underhanded tactic -- discrediting someone's
position by arguing that the situation is too absurd to possibly be
true, which allows the 'debunker' to avoid having to examine the facts
presented (which might actually require critical thinking).
I really haven't heard Karen articulate that everyone is against her.
And crazy situations DO happen in the real world; its just a matter
of really bad luck.
(For you psychology buffs out there, this is an example of the
"fundamental attribution error". This is a principle in social
psychology that has been well-replicated. It refers to the phenomenon
whereby people tend to overestimate the role of individual personality
characteristics as opposed to the role of the situation when judging
others' outcomes, but they express the opposite bias when accounting
for their own successes and failures.
This person believes that there MUST be something wrong with Karen as
a person, because it is not possible that she could have happened to
stumble into a bad social environment entirely by chance.
Does the person objecting to Karen's blog really think that having a
judge who believes that Karen's condition does not exist and therefore
cannot cause disability (contrary to the SSA ruling and, now, even the
CDC) allows for a fair and impartial hearing?
The judge in her case is clearly a maverick who is not following the
law by articulating clear standards by which Karen would be able to
prove she is disabled.
As for 'doctors', I don't think Karen believes that all doctors are
against her as there are many excellent doctors who would support her
claim. She is just saying she's seen many bad ones, not that there is
a conspiracy.
The definition of paranoia includes the requirement of unreasonable ideas. If you have proof that people have lied, if you have proof that people have defrauded you, if you have proof of all the things you claim have happened, then it's not unreasonable. Karen has offered documents and eyewitness accounts to prove that everything she has said is true. If you don't believe her, ask for the proof. Having bad luck is not paranoia; it's fact.
She has been accused of hypochondria, which has the same notion of being unreasonable and having imaginary symptoms. When other people can tell that you are sick or there are abnormal test results, it's not hypochondria. What's unreasonable is a doctor telling her that she's not sick when everyone around her can see that she is. Polio, MS and AIDS were all called hypochondria and faking at one time before proven to be real.
The fact is that most people with CFS are denied disability benefits. That's not paranoia, that's fact. The fact is that most people with CFS have bad experiences with doctors. That's not paranoia, that's fact. If you choose not to believe the facts then the problem is with you and not with Karen.
And if she's so depressed then why do psychiatrists say she isn't and anti-depressants don't help her? What are your professional credentials to say that they are wrong?
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