When "Good News" Isn'T So Good
0 comment Monday, June 16, 2014 |
I was reading a blog recently - I can't remember where, yay fibro-fog - in which the author was attending another visit to a specialist after a battery of tests and was told the Good News was that she wasn't suffering from disease A. Of course, while that should in theory be great news, the problem is if you're chronically ill, what you want more than anything is an answer, even if it's a bad one. We don't want to be reassured and we aren't actually overjoyed as we probably should be when disease A isn't in evidence - and this has to do primarily with still having symptoms J-P and all the subtexts of Ja.iii and so forth along with that that don't have an explanation.
As a matter of fact, malingerer definitions even go so far as to claim that you have a certified malingerer if "the patient demands rigorous and expensive tests, and shows what looks to be elation or relief when a diagnosis is confirmed due to these tests." For whatever reason, it never quite comes into the equation that a patient may just be glad that after months or years of being told that they're just being dramatic or "not coping", there's finally a diagnosis to back up symptoms J,K and O. They weren't just going mad or making it up and the tests finally prove it.
It is therefore a rather complicated headspace that one finds oneself in when you can see the test results and see that yes, finally, there's something there. And even so, it's a bittersweet moment to get that validation that yes, it's there...and more to the point, no, it won't just go away without treatment. Maybe never.
So after calling about my blood tests and being told "good news, the ones we got back don't show anything to be worried about" I'm not exactly elated. Especially when it turns out several of these were "borderline" and still subsequently dismissed. I'm caught in the law of averages, and since the universal Average says that even though I'm borderline, I'm "fine", that's that and nothing I say will convince the doctor otherwise. Same as before, then, really. The bone scan however looks a bit more promising as there were bits of my body lit up like a Christmas tree - elbows (which I knew, and ignored - like most of my symptoms, I ignore them; I've become too used to being told to just get on with it I stop reporting them), wrists to a somewhat lesser extent and something obviously not going well in my feet, with the left actually being worse. Now again, I may get caught up in averages or just the "Reassure the Patient" thing that English people do, as I was told it "didn't look hot like we call 'hot' " but there's obviously enough there for them to whisper over.
And somehow, I am actually relieved about that. No, I'm not dreaming the pain in my arms and in my elbows which has made carrying even a small shopping bag impossible. The agony in my feet which makes walking torture (Regardless of what the ATOS doctor may have said) shows up on the scans and x-rays as actually having a cause other than "just pain". What it is exactly, I don't know. But at least it's there, and the radiologist said something along the lines of "It's probably nice to know you're not mad; there is something there." I don't think they would have said it to another type of patient. But as I showed interest in the process and the science behind the nuclear medicine (it's rather fascinating to be honest), I'm grateful for that confiding.
It's a strange space to be where you want so badly for something to be found so you can do something other than coast from dull, listless day of "just cope with it" to the next. But I guess that's where I'm at right now. So, tomorrow, a review of pain medication and then Friday is the chest pain clinic (been advised not to hit the bike till then).
And then, I guess we'll see what the verdict will be.