I’ve gotten used to the various doctors oggling me and asking about all kinds of symptoms that aren’t relevant to what I’m seeing them for. I’ve also gotten QUITE used to snatching my hands out of reach when people go for them. I did manage to startle a doctor once pretty good with that – she was just going to shake my hand and I ended up with my hands balled up against my chest and giving her a terrible glare…in retrospect, it’s kind of funny. In part because she’s one of the only doctors who has never asked about other symptoms of my disorder without a good reason.

I’m still in the stage where my diagnosis is new enough that I don’t mind telling doctors about the effects, but I do draw the line at showing most of the hypermobility tricks. My joints are trouble enough without me doing that sort of thing and stretching them farther. I only show the elbows, because that’s the most stable joint in my body. (Hah, matter of fact, I had a big episode of this today – I was at my GP, and he had a med student in, who was quite fascinated to actually see someone with EDS. So I talked about it, and how you diagnose it, and why my old GP had missed it, so on. He was very pleasant and started with that thing all of the doctors-in-training should: ‘Do you mind if I ask you some questions and examine you before your regular doctor?’)

And the doctors who talk about me like I’m not there…well, I’ve kept exactly one of them, and that’s because he doesn’t do it often and he’s polite about it. He’ll ask if I mind him showing his resident/med student/etc whatever body part he wants to demonstrate. And, well, he’s a brilliant doc and a positively lovely person to work with.

The others, I’ve fired. I don’t mind being used as an example, but I WILL be treated as a person, damn it.

…I get the curiousity x2, because I have Ehlers-Danlos AND I have a service dog. *facepalm*

I imagine that by adding thyroid cancer, Don has had a similar multiplication of questions, particularly the unnecessary variety.

~Kali

And really, have they never given radioactive iodine treatments to someone who needs daily assistance with ADLs before? That seems incredible to me, considering how many cancer patients are of advanced age and that home care assistance is extremely common in that population. They really ought not to be treating Don’s case like it’s a one-in-a-billion fluke, because it’s anything but. (But of course, even if it was a one-in-a-billion fluke, that would still be no excuse for them being so dismissive about it.)

Damn.

I think there’s an unsaid second part of that – why are you such whiners? Others have it much worse than you!

I got that when I was in a psych ward. I was miserable, but I “only” had depression. This other girl had it much worse than me, but she didn’t throw “pity parties.” (We know the other girl quite well – yes, she has had a hard life but she’s also smart and knows how to work people.)

And you don’t have a choice. You have to manage. The pain won’t kill me, I just have to “manage” until I fall asleep or the meds kick in. I wonder if it’s the same people who say, “I’d kill myself if I were in your spot” who also say things like “Oh, you’ll manage.” Because, after all, you have said that you manage with everything, what’s one more thing? Stop kvetching! /bad attempt at sarcasm.

Mel, anna, everyone who runs the site – I appreciate a safe spot where no one’s going to say, “She’s just doing this for attention, she’s lying.” Where the myriad diseases and disabilities that people have aren’t belittled and I can’t imagine the grody messages you have to read to keep it safe.

Also, I wonder how the heck dr’s can say “Oh, you’ll manage!”. It is such a clear dismissal of patient and caregiver concerns. What the dr. is basically saying is “I don’t want to hear about how hard this is going to be for you”. You’re right, you’ve not fallen into a tiny crack, but a gaping chasm.

I feel your anger, frustration, and depression over all of this.