I finally said 'no'

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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.
 
I like how you handled it.
 
It happens to me all the time. My situation is different because I have no trouble talking. In fact, I talk too much and probably too fast.

I usually turn it around and find out how much they know about ALS. If it's nothing or next to nothing, I give them an education. If they are well versed (not many are) it just depends on my mood.

I have the most trouble and frustration with my relatives. For example, my niece was here to stay with her father (he has dementia) while her mother was up North selling their house. We got together several times during her two-week stay. On one occasion she asked me to take a walk with her. I told her I had been in the pool and could just about get from the house to the car and back but she persisted. Finally, I told her I didn't trust my new sneakers (it was the first time I had worn them) and was afraid I would fall. I think she wanted to see how far and fast I could walk. She could have just asked.
 
Great job Kristina. I like how you replied. Not mean, just guarding your heart.

Hugs
 
Kim, that would bug me too. My family are good about asking me straightforwardly about things. But I sometimes get prickly about it.
 
Yes, those are the same questions I always get too I've been on this journey a shorter time so still see it as a chance for me to get used to the idea myself the How are you doing question is pretty common too I'm pleased to be able to give a short answer or talk about it a while with out getting teared up if you're sick of the question I applaud you for not answer!
 
Kristina,
In the middle of an otherwise decent experience getting my feeding tube surgery at MGH, I had a visit from a resident not involved in my care. He sat on my bed after my surgery when I was in a lot of pain, barraged me with questions about my history, the answers to which could all be found in my records, insisted on looking at the surgical site, and then started to perform reflex tests on my arms and legs. When he got to my feet, he pulled out a sharp tool and ran it up my feet. I finally asked him to stop, which he ignored until I started crying and my sister asked him to leave. I have no idea why he was there, and afterwards I was too tired to address it with MGH.

That incident made me appreciate the many caregivers who don't do that kind of thing.
 
Wow Nona. That was so inappropriate of that resident. Ideally, you or your sister should have spoken to his supervisor, though I get that you were too tired and had other priorities at the time. Health care workers need to be reminded there are people underneath these diseases.
 
I'm so sorry Nona that's horrible! Like Karen said we are not just fascinating cases we are human beings.

On the other side of the spectrum I'm grateful for all the amazing compassionate medical staff I've met too. One time in recovery after a procedure the nurse said, "I see you have ALS..." and I thought oh great, here we go, but he went on to share how he lost his dad to ALS and it was one of the things that led him to become a nurse. We had a connection after that and I felt honored to have met him and had him taking care of me that day.
 
In Canada we don't get asked that, because it is none of thier business please and thank you. Not meaning any reflection on our neighbors to the south, but we are too shy to pry.
 
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