Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- Grafton
One thing that bothers me is any time I enter a medical setting of any kind, people constantly ask me first "when were you diagnosed?" immediately followed by "what were your first symptoms?" wanting the whole story, and they ask out of pure curiosity, not out of any relevance to why ive come to see them that day-- ive been asked by the dental hygenist, by the nurse putting my IV in, by a RT doing a routine vent check...etc. I feel it's a subtle abuse of power. As the patient, there is this expectation that you waive privacy for the sake of presumed medical relevance. But in all of these instances there is no medical relevance, they are just being nosy. And it's interrupting the actual medical care im there for, it's also forcing me to exhaust myself further in speech (speaking is hard for me), and it's emotionally hard for me being asked to revisit the horror story of my life on their whim.
Anyway, I was at the ER recently for a complication with my feeding tube. I didn't even tell the nurse I had ALS because it wasn't relevant. He did the vitals and "what brings you in" then told me a doctor would come soon and left. But then 5 minutes later he returned and said "I saw on your chart you have ALS," and I nodded, then he said "when were you diagnosed?" and I answered, and then, as I knew he would, he asked "what were your first symptoms?" But this time I said "why do you need to know?" And he looked startled but then admitted "Oh, I'm just curious" and I said "I don't want to share right now." And he apologized and left.
It felt good to finally close that down. Maybe im oversensitive. But it's something I really dont like. And i wonder if it happens to everyone with als or if it's because im young and people are even more curious as a result.
Anyway, I was at the ER recently for a complication with my feeding tube. I didn't even tell the nurse I had ALS because it wasn't relevant. He did the vitals and "what brings you in" then told me a doctor would come soon and left. But then 5 minutes later he returned and said "I saw on your chart you have ALS," and I nodded, then he said "when were you diagnosed?" and I answered, and then, as I knew he would, he asked "what were your first symptoms?" But this time I said "why do you need to know?" And he looked startled but then admitted "Oh, I'm just curious" and I said "I don't want to share right now." And he apologized and left.
It felt good to finally close that down. Maybe im oversensitive. But it's something I really dont like. And i wonder if it happens to everyone with als or if it's because im young and people are even more curious as a result.