A message for all parents whose kids have or might have chronic illnesses

[quietann]

One of the things that makes me most angry about the way my parents dealt with me – or failed to deal with me – is that I never felt safe to ask questions. Doctors talked to my parents, not to me. I hope their silence was well intended, that my parents wanted to leave it up to me to ask when I wanted to know, but I’m here to tell you: this is not the way to go.

This is from my online friend eolianbeck, who has a rather complicated medical condition.

Comments

[sweetmmeblue.livejournal.com]

When Liam was seeing the burn people at Shriner's they'd explain things to me and ask if it's ok and such. I'd direct them to talk to Liam, that he's a person and the one they have to work with. They looked at me a bit oddly first knoweing he was under 2 years old. I explained that although he didn't talk much he understood what was being said to him and that it was not ok to talk over him.

I try and do that at the regular doctor's office as well. They ask me what's wrong I try and get the kids to tell them and then I fill in the missing pieces.

I had a chronic illness and I got pissed as hell overhearing the doc tell my mom that I "wouldn't be as active as normal kids". Now I'm a PITA patient and don't take crap from doctors.

[wren13.livejournal.com]

There is nothing more obnoxious to me, and I try to include children in vet visits when they are present. They are usually more observant of the animal's behavior and want to know why their pet is sick.
When I was little, my parents had to change to a different dentist. The new one explained to my Mom over my head that he wanted to repeat all my xrays (which had just been done 6 months before) and pull some teeth. To my knowledge, this is the only time I embarrassed my mother by causing a scene, as I demanded my old dentist who wouldn't make me do painful things over again (loudly and with vehemance, I might add). I think I was 6. We went back to the old dentist.