There is a million bitter stories floating around the internet, and a billion more untold. They are about our experiences with dermatologists. Here is mine. I very occasionally see this doc, and kinda like him. He sings to himself when he does a biopsy, and that is pretty endearing.
But when it comes to dealing with eczema, it's the same old tired story. Oh here, do this cream for two weeks. Good bye. The cream in question turns out to be a strong steroid. I turn out to have dyshidrosis. The dyshidrosis is really bad on my heels: the skin is thick and hard, riven with deep, painful, insanely itchy cracks that bleed some of the time. A cream for two weeks? That's a hoot. Like putting cream on the rhinoceros' horn. I try it just to be dutiful. No effect. I go back to experimenting with kitchen medicine. At least, he could have given me an ointment. It would not have worked anyway, but it would have shown he was at least paying attention.
I do not want to insult anyone. But I do want to speak truth to power. I have heard many many stories since I began to hang with other eczema sufferers, many much worse than mine. Our culture has some very unkind terms for medical men who take a lot of money to prescribe expensive medicine that turns out to be rather worthless. And so what do the members of the derm community do? Instead of facing up to their practices which 1) treat us like meat slabs on a conveyor belt, with barely a few minutes of time, and 2) give us stuff that a lot of the time does not get the job done, and don't even bother to explain the downsides -- these same people tell each other that we are non-compliant. It is our fault that the medication did not do the job! Bloody hell. How's that for adding insult to injury? How's that for self-serving denial?!
Yes, there are people who will not follow directions with medications. But my personal experience with eczema sufferers, both adults, and parents of eczema kids, show them to be by and large extremely motivated to get control over this miserable, annoying, life-degrading condition. They are hungry for help. They are hungry for doctors to speak with them, to educate them and to take time with them and to point them in the direction of helpful tips and empowerment. Instead, they get the short shrift. They get told it's genetic, and incurable. You know what? I think that those are just code words for "lower your expectations; if the stuff I give you does not work, well, I already told you it was incurable!"
Here we have a forum about itch and eczematous conditions attached to an illustrious institution. Where are the doctors coming to have a conversation with sufferers? And why not? They certainly are not having those conversations in their clinical practices. Heck, they are not even talking to one another in the other side of the forum. It's dead as a door knob. Why? Could it be because medicine has not yet awakened to the realization that conversations are part of healing?
There are gazillion groups on the internet with sick and recovered people helping other people, teaching them what is known, supporting them as they struggle to come to terms with the disease, and sharing with them the results of their own experimentation and treatments. Where are the doctors? In all my years of doing this, I have met one, bless him. This was years ago. Tell you what, docs. If you won't talk to us, if you just throw meds at us, never call us to see how we are doing, never talk to us like human being to human being, you will go the way of the dinosaur when it comes to chronic care. After all, lab techs and computer programs can do diagnoses too, and cheaper. For treatment advice, we will turn to our peers who walked the path before us, rather than spend another depressing hour waiting for a costly visit that turns out just as depressing, all the more so for the niggly feeling we'd been had.
So. Maybe Samuel Thomson was right all along. He was the guy who trained people to be lay doctors for their own neighborhoods. Oh, around 1830 or so. Did I get the name right? He was the man who was into herbs, lobelia in particular. Heavy into throwing up as a cure. But never mind that. He wanted more knowledgeable neighbors helping neighbors get well. These people charged very modest fees, and were available just a block or two away. The internet got it even better. There are no fees, the neighbors are there any time you log on, and it's easy to find neighbors with the same condition!
Why dontcha jump on the cluetrain and LEARN to talk with us? We don't bite. Well, most of the time, anyway. And there is still some reservoir of good will that you can bank on. For a while yet.
Dealing with doctors has been a nightmare, and I fear it is something I will have to deal with for the rest of my life. I had one lovely doctor tell me that since I developed Eczema at the age of 23 I would more than likely have it for the rest of my life and that I need to just get use to it! Thanks a lot! Gee, that did wonders to my already depressed ego. I think it is important for those of us suffering from an itch we can't get rid of to communicate with each other, no doctor I know is going to listen as well as someone who is going through what we are. Thank you for your posting, at least I know I am not alone out there searching for some relief!
Jenn
In eczema, why aren't there a million mini-studies blooming across the land, focusing on incremental ways to help us? Like the question of wet wraps: how do plain water compare with vinegar water, with tars, with emollients etc etc. I could churn out a few more options to look into. We don't need expensive huge studies. We just need to know what seems to help, empirically. Quick on their feet kind of studies that get published immediately on the web. If plain water wraps do almost as well as steroid wraps, this would be tremendous for parents to know. If probiotics help, and they do, the studies are already there, then why is it that clinicians are already not recommending them, testing out the various strains? What's to lose? Why do we have to wait a life time for such simple answers?
Dr Atherton [a well-known British eczema expert] pioneered some rigorous studies with Chinese herbs. Several research groups have been investigating them for 15 years now (!), and as much as I can tell, they have focused not on identifying the safest and generally useful mix, so that people could start using them. They are laboring on identifying "the active principle" so that someone can patent it and get rich. Does nobody have any conscience anymore? Don't people go into medicine any more to help people get well?
Boo, for shame!
Christine
Written by Vera Bradova © 2004-2007
Updated 11-13-2006
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