It has been suggested that we "hysterically" manifest our symptoms (consciously or unconsciously) in order to gain sympathy from friends, family and the medical community, and/or a "free ride" courtesy of the government. Those not "in the know" often believe we enjoy countless perks. Almost all of us have heard, at some time or another, someone say something like "Gee, I'm tired all the time too! I wish I could just lie around all day and not have to worry about going to work or keeping up with the housework."
I have just emerged, bloodied and somewhat bowed, from a fruitless discussion (one of many) with yet another doc. I have lost count of the discussions I've had...with doctors and other non-believers...about how my deepest psyche must have a reason (one I can't or won't recognise on a conscious level) for presenting me with these symptoms I persist in believing in. EVEN THOUGH I NOW HAVE EMPIRICAL EVIDENCE that something is rotten in the state of Denmark (the kicker being that this doctor is questioning the validity of tests in general and mine in particular). I can state in emphatic terms til I feel synapses frying themselves to a crisp from the effort, that I am rapidly going broke broke broke, that I don't get any government handouts, that I have been forced to give up all of life's little pleasures (and I do mean all of them except, occasionally, reading...and that not of my former standard or volume...and, occasionally, a shopping expedition in which I must do as much damage as possible in as short a time as possible since I have no idea when I'll be able to leave the house again), that I get no sympathy from anyone, that all my "friends" have disappeared (putting in an appearance only when there's something they want from me), that I deal daily with emotionally debilitating scorn and disbelief, insults and flavour-of-the-month amateur psychoanalysis, that my children, to whom I am deeply devoted (despite my complaints) are virtually raising thmselves. I get to watch my home, upon which over the years I have lavished tender ministrations to create a comfortable and pleasing environment, virtually falling apart around me because I can't maintain it and can't afford to pay someone else to maintain it. I experience the deep disapproval of the staff at my childrens' school who all too patently think I just don't want to attend various meetings and functions. (They'd certainly never believe how long and hard I cried the year I couldn't make it to their Christmas concert). Every time I emerge from under my rock, some happy-pants moron is there to bounce cheerfully up to me and say something like "Hey, you're out and about! You must be better!" (No, idiot; I just happen to be able to walk today and since I'm suffering from terminal cabin fever, I'm willing to send myself into a spectacular three-week crash just to get the ^%*^ out of the house for a couple of hours.)
I would be ecstatic... I would be eternally grateful... I would give even unto half my (remaining) kingdom... if someone, somewhere, could, with a few sessions of psychoanalysis, lead me back to the life I had 13 years ago. For eleven years I struggled with this frigging disease before it literally turned my world upside down two-and-a-bit years ago. For eleven years I had myself convinced that I could ignore what was happening to me, that I could use force of will to keep going, that I could use "mind over matter" to halt or reverse the slow decline to the almost total helplessness in which I now find myself. I treated myself more cruelly than anyone has since because I honestly believed I could overcome what was happening to me if I just tried hard enough.
Yesterday I reported to the above-mentioned doctor that I've had waking temperatures of as low as 94.9. The response, the exact wording of which I of course can't remember, essentially implied that either I was lying or that my imagination was running amok, because if I had really registered such a low temp, I'd have been in a state of hypothermia. Well DUH! And is this cause for concern? Nope. It's cause for dismissal of me as being exceptionally creative in my attempts to gain unwarranted medical attention (i.e. in this learned individual's unsupported opinion, I had attained new heights of hypchondria and/or hysteria).
Right now I am fighting for sufficient evidence to put together a case for disability benefits of some kind (preferably before I lose my home and the welfare comes to take my children away because some zealous soul has reported that I'm "neglecting" them), and quite frankly I don't care what they want to call it as long as some doctor somewhere recognizes and is willing to put in writing that I'm disabled. Frankly, I'd as soon not receive a formal and documented dx of CFIDS because even with a doctor's "seal of approval" I would still have to deal with much of the same bilge as I am now, and we all know that a dx of CFIDS does not necessarily a case for disability make.
Oh yeah! I get sooooo much out of persisting, in the face of so much "evidence" to the contrary, in believing that I have a physiological and not psychological disorder!
OK, vent-fest over :)
[Ed note: since this writing, the writer has received an official diagnosis of CFIDS and is in the process of applying for disability.]