DAMNED IF YOU DO, DAMNED IF YOU DON'T
One of the worst things about CFS is the prejudices and game-playing you'll run into.
Almost every woman with CFS has at some point been told her marital status is the ultimate problem – when I was married, I was told I "resented my husband making me work", and when I was divorced, I was simply "depressed over the divorce"; no need to do the medical testing that CFIDS.org said would be abnormal, because there was a much simpler explanation for it. A friend who has never been married was told that getting married would solve all her problems. Well, I had the same symptoms before, during and after my marriage, so obviously, changing my marital status was not the magic cure!
Whatever you tell doctors will be twisted around in some way to prove that the problem is psychological. According to my medical records, I didn't lose my job because of my symptoms, my symptoms developed only when I got depressed after losing my job. I also didn't stop exercising because I was too weak to continue, I got sick after I stopped exercising, and therefore, would feel better if I'd get off my lazy butt and get back to my regular exercise program. You know, the one that makes me even sicker every time I try it.
When I reported that some days I didn't get dressed because my shoulder was locked and it required several minutes of painful contortions (which often produced intense muscle spasms) to change clothes, therefore, I didn't torture myself unless I was going out, the orthopedic reason for avoiding twice-daily pain disappeared, and the sentence was worded to imply I was simply too depressed to care whether I got dressed or not. Ditto with bathing – some days I was too unsteady on my feet to safely get in and out of the tub, and no one lived with me to find me if I fell, so for safety reasons I didn't attempt it on bad days; that was also lost in the translation so the doctor could portray me as too depressed to bathe. Despite the legitimate physical reasons being in writing on the intake form I filled out, the doctor claimed he understood me to say I wasn't doing these things because I was too depressed – he wasn't misrepresenting the facts, it was a simple misunderstanding. And if no one reads the intake form, his false version is all they know about.
If you refuse anti-depressants (they make me sicker; I've had severe side effects more than once), then you "don't want to get better because then you'll have to return to work". If you accept the prescription, it'll be proof that you know there's not really a physical basis for your symptoms. And God forbid you should admit that the anti-depressants and/or counseling helped you a little, because then they'll force you to continue on them and scold you for not continuing to improve by leaps and bounds – clearly, you're lying when you say you still aren't well enough to work, you really mean that you're just too lazy to work and think you've found an excuse to never work again.
When I admitted to being able to work (literally) "a couple hours a week", I was badgered why I wasn't working full-time. As every CFS patient knows, you can do almost anything once, but you may not be able to do it a second time. In the early years of this relapse, I was able to go out once a week – three days of conserving energy in advance, and three days of resting up afterward to return to baseline. The judge seemingly couldn't process the concept that I cannot do again on Tuesday what I was able to do on Monday, or that working a little could not be extrapolated to being able to maintain the same level of productivity over an 8-hour day, much less five 8-hour days in a row.
The leading California published Court of Appeal case on CFS is Reddick v. Chater. The patient admitted to selling Tupperware. Her description was that family members took the catalogues around and got orders, and assisted her with filling out the forms; she merely turned the orders in to the company for fulfillment. (Which is pretty much the way that I'm currently selling Tupperware, too; I don't do parties.) The Court of Appeal noted that the judge's characterization of her Tupperware "business" didn't square with the testimony; my judge has been exaggerating what I say I am able to do, too – inventing facts to support the conclusion he wants to reach, and dismissing as "not credible" any testimony (even his own expert!) that I cannot work full-time.
If you are trying to work a little, you will be assumed to be able to work full-time. If you are not trying to work at all, you will be assumed to be too lazy to work. There is nothing you can say or do that will lead to the conclusion that you really want to work, want to continue your beloved career, but are physically unable to do so because of your symptoms. According to the disability system, you are guilty of fraud until proven innocent.
If you make the best of a bad situation, find something to occupy your time (say, needlework or reading books), expect to be accused of having an ulterior motive, quitting your job to pursue a hobby at taxpayer expense. If you keep quiet about your symptoms, it'll be assumed you're not complaining because you don't really hurt. But if you don't do anything all day but whine about your symptoms, that will be proof that you're depressed and just need some pills and counseling to return to work. There won't be anyone willing to accept that if you're distracting yourself with your hobby, you don't have time to focus on the pain.
If you won't go out alone because of legitimate fears for your safety, or because you can no longer drive due to your symptoms, expect to have that twisted around to imply that you have psychiatric problems, fear of being alone, agoraphobia, depressed and anti-social, excessively dependent personality ... anything other than the truth that you have a long history of passing out and are no longer legally permitted to drive, and wisely prefer to have someone direct traffic around you if you pass out while crossing a busy street. When put on the spot, one of my doctors did admit there was a legitimate safety issue, I wasn't just an emotional basket case as he'd portrayed me.
Similarly, because I have always been active, I've made a conscious effort to do a little walking and resistance exercises. Damned if you do – the judge concludes that I cannot have CFS because I have not lost muscle tone; damned if you don't – if your muscles have turned to jelly from lack of exercise, they'll conclude that your only problem is deconditioning and you just need to go to the gym a few times a week, and you'll be ready to go back to work in a jiffy.
One of the typed medical reports in my file proves just how little doctors pay attention to what you say. On page 1, it says that I reported having tried one prescription medication with no success. On page 3 of the same report, it says that they prescribed the same thing I'd already told them didn't work. A couple days later, I phoned in to report that having already tried 1 pill and 2 pills with no effect the last time I took the prescription, I had been taking 3 pills and even that didn't help. The doctor's notation on that phone slip? "Tell patient to take 3 pills." (Didn't I just say that 3 wasn't helping?)
He, too, later claimed that I "never told him" something that was right there in writing on the lengthy form that I was told to fill out and bring to the appointment. I spent a couple precious good hours filling it out, and he never even bothered to read it.
Nonetheless, I now put everything in writing when I need to see a new doctor. A written medical history is mailed in as soon as I make the appointment, and a copy of it is taken to the appointment with me. It's faster for them to read it than to ask questions to elicit the same amount of information, and because it's written, you're the one who controls which direction it goes in – no more you say "sleep a lot" and the doctor immediately hones in on depression, because you're steering him toward the flu-like symptoms, the fever that wouldn't be there if you were just depressed. Moreover, what you told the doctor is right there in writing ... he can't claim "she never told me"; he has to admit "I never read it" or "I didn't pay attention to that part", which makes him the culprit, not you. Similarly, if he tries to twist your words or your medical history to say what supports his desired diagnosis, what you actually told him is right there to prove that he got it wrong.
Trust no one. Document everything. Mail out only photocopies – keep the originals – paperwork they don't like has a habit of "getting lost" or "lost in the mail", so you can easily provide an additional copy if you have the original. Doctors and judges are not there to help you, and should be treated with suspicion.
Probably the best thing you can do if you're applying for SSDI is to take a tape recorder to your medical appointments. "This is Patty Patient. It's 2:30 PM on May 1, 2009 and I am having an appointment with Dr. David Dimwit. Go ahead, Doctor." Then have someone else transcribe the tape (with a sworn certification of accuracy), attach copies of everything you gave the doctor in writing, and copies of his chart notes/written report, and then there's no way he can claim you said something you didn't (or didn't say something you did). Highlight any inconsistencies between what you actually said and what he says you said. Offer the judge the original tape recording. Then there's no question who's lying about what was said during the appointment when the doctor tries to claim you never told him you physically can't do what he's trying to blame on being too depressed to try.
My judge, inauspiciously, chooses to believe every word in the medical records is true and every word of my testimony is false – if the doctor says I told him I've been on anti-depressants most of my life, then that's what I said. But having good records of your own, including transcripts of appointments, may help convince the Court of Appeal that the doctor and the judge are the ones who are lying, not you.
What we see depends mainly on what we look for. ~ Sir John Lubbock
And, unfortunately, most people, when dealing with CFS, are looking for signs of depression rather than signs of a physical condition. They get so hung up on the "fatigue" that they ignore all the neurological and immunological abnormality, and apply unreasonable/unreachable standards that would never ever be applied to someone seeking Disability benefits for the near-twin illness MS.