stonebender | (no subject)

I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.

Flat | Top-Level Comments Only

That makes sense to me.

Also, I feel so hopeful for the next generation that some of them will get good treatment and care from day one instead of having to wait and wait and be abused, as you did.

I'm pretty hopeful too. Changes still need to happen, but it is certainly better than it was for me.

Edited 2015-01-18 04:36 (UTC)

Fascinating. Is that knowing a positive? A closure? Or a beginning?

I think the docs -- not completely the medical system, but particularly the hierarchy of disdain the docs cling to -- have colonized us well and true. I have a handful of DXes, and I still long for one label I could ... What? attach to my chair? Tattoo on my numb bits? Print a wallet card to stuff in the face of those who want to talk about why I'm completely crippled?

It took me a long time to get that disability is something one claims for oneself, since the docs know sweet F A about it. (If they can name your disease, it's a good day.)

I think it might have meant more earlier in my life. I'm still not completely sure how I feel about it. I think it's closer to a things to do list item being crossed off. Well that is done anyway, but having closure etc. isn't at all how I'm feeling. Maybe if there was a next step, but really it's just a piece of data to use in the future.

As far as doctors and the patriarchal system being a big part of the problem. I do get you and I do agree, but at least for me (and I'm a generally social old white guy, so I don't get a lot of the crap others do.) Doctors have a really stepped things up. For me though the thing that changed was finding Steve, my primary care physician who is a PA and not an actual doctor. Really early on in our relationship I was having a hard time and Steve said, "I'm your doctor Guy. I'm on your side." I'd always felt antagonism from the medical profession and having Steve say that really changed my perspective. And of course others experiences will vary wildly. For me that was the big step that got me starting to deal with the medical profession again. Which is not to say I don't have any trouble with how medicine still works.

It's delightful how one positive experience can change one's worldview.

Two weeks ago I would have put up quite a fight to the "docs have stepped things up" comment, but last week I saw a P.A. for a longstanding issue.

She was amazing! She pulled out the diagrams and showed me exactly what was going on. She advised that a final DX depended on imaging studies, but they weren't worth having if I wasn't headed for surgery. And then she explained that surgery was a 50-50 proposition, and that the lucky 50 often had the problem recur, putting them in the queue for repeat surgery.

I cannot imagine a procedure-oriented specialist being that frank. Ironically, subspecialties like ENT are bringing PAs on board so the doctors can spend more time in the procedure suite.

Anyway, you've seen 'em all, haven't you? The stories I read and hear about the medical experience as young kid make me dizzy. It's enough of a challenge as an adult ...

In my experience, PAs and NPs are SO much better than MDs at communicating with patients. With doctors I often feel like I'm dealing with a poorly behaved puppy; I try to train them and then usually they behave OK, but every now and then they go and pee on my leg.

Wow, what a complicated experience! And what a thoughtful analysis.

You are amazing!

Thank you, coming from you that means a lot.

Thanks for posting this. I'm glad that your clinic visit was all right, and that having a confirmed dx feels like a good thing. And it helps me to be reminded I'm not the only person who dreads dealing with doctors and sometimes goes ahead and deals with them anyway.