The benefit of knowing the condition, it seems to me, is that you can tell people what you have (instead of just aches and pains and a bunch of weird stuff), every time you see a dr you don't have to go over the whole history - you can just say you have "X", you are more likely to get a treatment that works, and you can have a better sense of your prognosis. I particularly find it difficult at work to explain why I take so much time off for dr's appts, treatment etc - I have never been one of those people who fake being sick and I hate to think that anyone at work may think I am one of those people....
But you are right, with knowing the condition there is the risk that one would have to face the prospect of knowing that you condition cannot be treated, which is a scary prospect!
Fran
Quote:
Originally Posted by dizzie lizzy
Fran,
I absolutely empathize. I keep going back and forth myself and I've been dealing with this for only half the time you have. I actually asked my Neurologist that exact question. When do we get to the point where we just say here's what helps and it doesn't matter what name we put to it? On the one hand I feel that there is power in being able to say I have such and such and to be able to explain somewhat to people what that means. On the other hand, once you have a label it complicates a lot of things- especially with congenital disorders that cannot be fixed. Maybe someone who has suffered for many years without a diagnosis and finally got one can add more insight into how it has/hasn't helped them. Any thoughts?
DL
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