Monday, May 16, 2011

Alzheimer's Disease - Do You Disclose Your Diagnosis and Online Activities?

I make it a point to tell readers here that my life is pretty much an open book.  I have talked about nearly everything here, from losing my hair, to mistakes I've made in my personal and professional life, to answering questions about sex in the face of illness.  There's not a lot I leave out.

Or so I tell you...

In my real life, I do leave things out.  NONE of my doctors - not a single one - nor many of those I know personally are aware what I do here at WEGO Health or at  I choose to leave this part of my life out of medical and most personal conversations.

I have a good reason - honest.  Well, a few actually.

#1  I really prefer anonymity.  I would be a lovely wallflower, but I found early on that sometimes you need to put your name on what you're doing so that readers will take you seriously.  You have to invest something in what you are saying.  Be accountable.  Using my name is my way of being accountable for what I'm saying.  I hope that it gives patients and readers a reason to carefully consider what I might be talking about.  That said, I have no such needs in my personal life.  I expect my personal physicians to know and trust that I am fairly knowledgeable about my health.  I'm far from perfect, this is why I am constantly bugging them with questions.  However, there are too many physicians out there who don't bother to actually read what their blogger patients write... they simply assume they're wack-jobs.  *ouch*  I'm blessed to work online and to be reviewed by some of the foremost physicians in their fields.  That's enough for me for the present.

#2  I am a chronic pain patient.  As such, I already suffer terrible discrimination within health care as a whole.  I don't feel the need to set myself up for more by a doctor who is not open to the new and expanding world of health based social media.  I believe this ignorance about the benefits of health based social media and patient advocacy will change, sooner rather than later.  I fully expect that it probably won't be long now before I'll reveal to my personal doctors exactly what I do and where I am when I'm not in their offices.  I'll be sure to let you know how that goes :)

#3  Judgment.  Many of my friends and a majority of my family does not know about my work.  If they ask me, I tell them, but frankly, few have ever asked.  They are on my Facebook account and my Twitter account where I regularly post links to articles I've written, discussions and blog posts.  I figure, if they're that interested in me they'll ask and I'll tell them.  I don't like being judged for what I choose to do since I've been disabled by my health conditions.  I choose to think of what I'm doing as a patient advocate as important and helpful.  For many who don't understand what a patient advocate does, I am judged as wasting my time tinkering around on the internet instead of getting a "real life."  Yes, it bothers me.  But I will not stop what I'm doing so long as it serves a purpose and helps even one other person.

#4  TMI.  Honestly, unless you're suffering similar symptoms, who on earth would want to actually KNOW half of the things about me that I write about here?!  To someone unaffected by my health concerns, I'm probably pretty boring and more than a little annoying.

So that brings me to the question that started this post...

Do you tell people that you are a Health Activist?  How much do your doctors know about what you do online? Your family?  Your friends and neighbors? 

If they know, how do they react?  Do you find that it is a positive experience revealing what you're up to during the day on the computer?

Have you suffered negatively as a result of revealing your diagnosis or your website or community participation?

No comments: