J-pouch Life » IBD http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Wed, 08 Sep 2010 04:21:54 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 Don’t Ask, Don’t Tell http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/ http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/#comments Thu, 16 Jul 2009 02:13:57 +0000 Lizz http://www.jpouch.net/?p=2068 shhSo, at every previous job since I’ve had IBD I’ve been very vocal about my disease.  It was practical because I was sick at the time, and when people asked me questions, the advocate in me burst forth!  Since I’ve been in remission and managed to get a job in Portland, OR in this crazy economy, I’ve decided that it no longer requires mentioning, or for that matter, broadcasting.  I tend to get up on my educational soap box when it comes to IBD, which is a good thing, and something I will certainly continue to do, however, I think many of us have learned all too well that even the most empathetic and understanding employer will, to some extent, always see your disease as part of who you are, and therefore, as a limitation.  I’d rather my work speak for itself.  I’m working as a paralegal, which basically means I do a lot of writing that the attorneys sign their names to.  It’s okay because I adore any chances to write and get paid for it ;) I’d rather keep professional courtesies, well, professional.  I am a very open, friendly person and I definitely let that come out in my job, but I am also trying to work on that part of me that for so long made Crohn’s a part of my identity.  It doesn’t define me and I no longer want it to, so I’ve made a real effort to modify that.  It’s easy to not complain when you are in remission and not suffering or in pain.  So, for the past few weeks, I’ve overheard our secretary talk about her mother’s “colitis”.  I kept my mouth shut until today when another paralegal started talking to her about a friend of hers who had Crohn’s that was airlifted to the hospital.  At that point my IBD alarm went off and I thought, “Okay, I know a lot about this…maybe I can offer some helpful words.”  So, without an intro of, “I have that too!” I just asked if the girl was on any meds.  Sounded like she’d unsuccessfully tried everything, including Humira, which was my savior.  I had nothing more to offer, so I hushed.  The secretary then started talking to me about it more and I said, “I have an interest in GI disorders and know quite a bit about it, so I was curious.”  I was actually able to make some suggestions to the secretary about her mother, she then asked me, “So do you know someone with it?”  My reply, a smile and a, “Yes.”  I then went back to my work.

So what is your policy regarding IBD in the workplace?  It’s certainly nothing to be ashamed of, and I’m oddly proud of it, but I’ve lived and learned and am, for now, deciding to remain a mystery :)

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]]> http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/feed/ 12 Sailing for IBD Research http://www.jpouch.net/2008/06/20/sailing-for-ibd-research/ http://www.jpouch.net/2008/06/20/sailing-for-ibd-research/#comments Fri, 20 Jun 2008 06:54:16 +0000 Megan http://ucstory.wordpress.com/?p=153 We received this email, and we would like ask you to take a few minutes and visit this site, seems like they are really trying to raise awareness for RESEARCH for IBD with CCFA.  They have a grant deal pending that if they raise 10,000 of their own before they sail around the world, they will get another $10k donated, so $20,000 for IBD Research at CCFA.  This is legit and done by friends and families of people devastated by IBD: https://www.thepoint.com/campaigns/sussman-at-sea

Email Sent to us Reads:

Hi Mark and Megan,

Three years ago a good friend died from post-op complications after his colostomy.  He was 26 [26 yrs old]at the time, and as you can imagine it was a huge tragedy all of us in his life.  Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn’s and Colitis research (he has secured a $10,000 matching grant).  While the story is a sad one, I hope your community can find inspiration in Ari’s efforts to celebrate the life of Yossi and keep him present in our lives.  The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea.
Thank you, Joe H.

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