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	<title>Active Gray Matter &#187; illness</title>
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		<title>To Disclose or Not To Disclose: Let&#8217;s Talk</title>
		<link>http://activegreymatter.org/2009/01/to-disclose-or-not-to-disclose-lets-talk/</link>
		<comments>http://activegreymatter.org/2009/01/to-disclose-or-not-to-disclose-lets-talk/#comments</comments>
		<pubDate>Thu, 22 Jan 2009 19:07:09 +0000</pubDate>
		<dc:creator>Krishanna</dc:creator>
				<category><![CDATA[advocacy]]></category>
		<category><![CDATA[disability]]></category>
		<category><![CDATA[self-employment]]></category>
		<category><![CDATA[disclosure]]></category>
		<category><![CDATA[healthcare]]></category>
		<category><![CDATA[illness]]></category>
		<category><![CDATA[privacy]]></category>
		<category><![CDATA[robert scoble]]></category>
		<category><![CDATA[scobilizer]]></category>

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		<description><![CDATA[There&#8217;s a thread winding it&#8217;s way around social media and tech circles right now about Internet transparency. I had a discussion with a friend about it not too long ago as she was moving through questions of &#8220;How much is &#8230; <a href="http://activegreymatter.org/2009/01/to-disclose-or-not-to-disclose-lets-talk/">Continue reading <span class="meta-nav">&#8594;</span></a>]]></description>
			<content:encoded><![CDATA[<p>There&#8217;s a thread winding it&#8217;s way around social media and tech circles right now about Internet transparency.</p>
<p>I had a discussion with a friend about it not too long ago as she was moving through questions of &#8220;How much is too much&#8221;, and &#8220;When is it not enough&#8221;? I participated in a TweetChat last night with other techies, coaches and social media mavens about this topic. Then when I began reading my e-mail this morning, I ran across something <a href="http://scobleizer.com/" target="_blank">Robert Scoble had to say on Scoblizer</a> about disclosing health illnesses and conditions online and read the ensuing comments.</p>
<blockquote>
<h2><em>Your healthcare privacy is dying and why youâ€™ll killÂ it</em></h2>
<p><em><a href="http://friendfeed.com/e/58dd1134-8823-46c0-8922-0c95b4d7f21d/I-will-discuss-why-I-can-never-have-another-Diet/">Two days ago I told my friends on friendfeed</a> that I had a rare kidney disease and that I could no longer eat red meat or drink Diet Coke or Pepsi, among other dietary changes. Donâ€™t worry, my dad has the same disease and heâ€™s still doing fine, and the doctors have run a crapload of tests and found that Iâ€™m otherwise healthy. </em></p>
<p><em>But look what happened. 200+ comments. </em></p>
<p><em>That prompted me to <a href="http://friendfeed.com/e/08954685-00fe-4e55-b28f-4b99f83bfb0d/Health-privacy-is-dead-Here-s-why/">write another friendfeed item</a> saying that health privacy is dead. <a href="http://friendfeed.com/e/08954685-00fe-4e55-b28f-4b99f83bfb0d/Health-privacy-is-dead-Here-s-why/">I gave a ton of reasons</a> and lots of other people jumped in and either agreed or argued with me.</em></p>
<p><em>So, how about you? Why donâ€™t you join in on these two threads, or leave a comment here, about why or why not you will share your medical condition with the public</em>.</p></blockquote>
<p>The comments varied from people wanting to pursue a real discussion to people arguing with Robert about right and wrong.</p>
<p>It seemed appropriate to share it here because after all, we as people who live with disabling and chronic conditions daily are always having to balance those same questions: &#8220;How much is too much&#8221;, and &#8220;When is it not enough&#8221;? These questions exist whether we are self-employed or job hunting, or making new friends and now our comments are logged online if we participate in social networking such as <a href="http://www.facebook.com" target="_blank">Facebook</a>, <a href="http://twitter.com/" target="_blank">Twitter</a> or <a href="http://linkedin.com/" target="_blank">LinkedIn</a>.</p>
<p>For me, it&#8217;s a matter of personal choice. I disclose that information when I feel itâ€™s appropriate. I make no secret that I live a disability, I&#8217;ve written about it here, on <a href="http://www.krishanna.com/" target="_blank">my own blog</a> and I&#8217;ve shared the whole story of <a href="http://undertheknifeaward.blogspot.com/2008/01/3-krishanna.html" target="_blank">how I came to live a disability online</a>. I am open about it when people I don&#8217;t know well ask but there are times when itâ€™s in my best interests not to go into detail.</p>
<p>Like <a href="http://carolinadreamz.blogspot.com/2009/01/in-response-to-robert-scoble-and-heath.html" target="_blank">Heidi,</a> a commenter on Scoblizer, there are times when it&#8217;s my best interests to claim ignorance and just omit that I know as much as I do. Sometimes this means doing something their way, without jepordizing my health of course,Â  before I can show them doing it another way might be a better route.</p>
<p>There are just as many reasons why one should disclose disabilities and chronic conditions as there are not to disclose.</p>
<p>So, what about you? Where do weigh in on this topic? Do you make it public or are you more choosy?Â  Share your opinion with us!</p>
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