April 5, 2010

When Our Powers Combine, We Are....Captain Advocate!

I realize this post has been a long time coming.  I appoligize for taking so long to get it finished and posted.  We've had some issues come up lately (my puppy dog fell seriously ill last week, we were out of town before that, this weekend obviously was Easter and we had family to see, and so on).  The good news is I think I'm finally ready to get this one online!

So, wow, where to start!  I wanted to fill you in on some things that have been happening (primarily with my employer but also a few other directions) which are in keeping with my awareness goals.  As you know, "UII" is short for Understanding Invisible Illnesses, and people can't understand them if they don't know they exist!  So, I see basic awareness as the first and most crucial step in gaining support for sufferers from the rest of the world, which is how we can create a more welcoming society and encourage greater productivity for sufferers who must operate on alternative system, if you will.

As I've mentioned before, my employer has a "Disabiliy Network" (we're trying to think of a new name, so if you have any suggestions let me know) which aims to support 'disabled' employees as well as those who may care for a 'disabled' child, parent, spouse, etc.  It's a wonderful concept, but a difficult one to promote and grow.  The network has only existed in my local office for two years, and has not garnered much attention or support so far.  No one's against it, by any means, but few people have expressed much interest.  I could go on and on about why these problems exist, but most of us are familiar with them in our own lives.  In short, factors include not understanding who the network is designed for nor what benefits it can offer, not being able to easily identify potential members, people who fear (or otherwise dislike) the idea of being identified as "disabled", and plain old limited time.  It actually turns out that I'm the only person from our audit division who's really tried to become involved so far (it makes sense to me, most of the audit division works from client sites and is not in the office on a regular basis when events have been held).  I also personally feel that the types of events that have been attempted in the past miss their mark a bit and would be more effective once the network itself is more established.  Since peole don't understand what the network IS yet, they aren't likely to turn out for information sessions it hosts.

So, I obviously have my own ideas and goals I'd like to try and live out within the network, and they've also clearly told me they hope I can draw in more of my peers, which I'm happy to do.  I don't have much personal clout that would get people to turn out, but I do have a good bit of related experience between UII online and my efforts in college.  So, I generated a list of ideas to promote the network, and submitted it for our latest meeting.  Interestingly, a national meeting for the network was held shortly before our local office meeting, and many of the thoughts and ideas put forth there appeared on my personal list!  (I think that will lend some credence to my other ideas, now that the group knows my ideas are in line with national movements.  It's a little tough sometimes to get manager and partners to put much faith in the ideas of a newbie, particularly when they already feel so beaten down by failed attempts.)  Ok, so now we know I'm gaining solid footing within the local network!

As part of the new ideas being put into action for both local and national disability networks within my firm, they are looking to shift a focus more toward invisible illnesses (HA!  YES!), because they finally realize that is what most of our 'disabled' employees live with.  Somewhat related to this shift, they are looking to profile a few employees (I believe, from across the country) to tell their stories.  Hopefully, this will help other employees realize how many of their peers may be affected by a 'disability', or even encourage more 'disabled' employees to step forward and participate in the network!  I totally support this idea:)  And as no surprise to you, dear readers, I was pretty quick to offer my story for the project.  I have no idea right now if I will be selected for this project, I suppose it depends in part on how many other people are willing to come forward, but I will DEFINITELY keep you posted;) 

As I may have mentioned in a previous post (I might not have, I really don't remember - at this point I have trouble remembering if I've eaten each day), I 'won' a prize at my firm's annual meeting of having lunch with one of a few key leaders in the office.  For me, the choice was easy - there is one partner who is head of the audit division, friendly with my performance manager, and involved in trying to gain new non-profit clients for the firm (which is obviously the type of engagement I'm trying to work on).  We scheduled our lunch for after the brunt of busy season, which happened to be last Monday.  It went well; it's pretty cool to be a newbie and able to talk about everything from goofy stories to the possibility of raises with someone so far up the ladder.  Never one to pass up an opportunity, I worked in a few notes on the disability network and about UII, which I'm pretty sure have been mentally filed for future reference:) 

Then the big break hit (well, relatively speaking it's a big break in my eyes)!  As I wrote in my latest post, a new friend on Facebook told me about a local walk being held by the Sjogren's Syndrome Foundation on May 1!  Once I finally got the chance to look into it more closely, I flew into action.  In what feels like no time, I had created a 'team' to walk and the associated website (seen here) and gotten two groups behind it.  My first thought was the Disability Network.  The firm regularly supports similar events, and especially those which affect our own employees.  The network had already approved the plan that every event the firm supported which could be related to a heath issue would automatically be supported by the network (naturally, with our name plastered everywhere so employees get used to seeing it).  I had been encouraging the network to focus on specific issues that someone in the group is knowledgable about as we get off the ground, and worry about expanding our scope as we grow (when I came in they were trying to make each event 'appeal to a broader audience'...which is nice in theory but results in a watered-down presentation that didn't provide much information or garner much support).  Naturally, this seemed like the PERFECT opportunity to put all these ideas into action.  I sent out the link and information to the other members of the network.  There's another group in our office which organizes all types of community outreach events, including things like these walks (bike-a-thons, runs, and so on).  So, shortly after sending out the message to our network, I decided to just go ahead and contact this other group about getting the firm behind the Sjogren's Walk.  I was THRILLED when the woman I spoke with seemed ready to act on it!  She said she might be able to have some publicity going around on it as early as this week, and I cannot wait.  I also took the opportunity to mention another idea I had had to promote the Disability Network which would have to run through their group, and she seemed receptive to that idea as well (though of course it would be revisited at another time).  I also took the added step of directly contacting some of my coworkers with whom I am most friendly.  A few have even already expressed interest in joining us!

Next, I thought about the youth group I work with at my parish.  I've read many posts from other sufferers who have either found support (or sadly, are horribly appalled by the lack of support) from their church / faith community.  To me, it's never been much of an issue - the only two times my conditions ever really affect me at church are with regards to kneeling (and 9 out of 10 times I can get around it with no one noticing I rest my backside on the pew, and the other times I deal with as they come along), and sometimes with receiving Communion.  With my dry mouth, it's hard for me to consume the host, and I prefer to also receive the wine, especially on days where I'm serving as a Eucharistic Minister and need to be able to speak to the people I distribute to - but again, it's something I can usually work around easily.  So, while my friends at the church know about my medical situation, I never made it much of an issue with the pastor or anything like that.  I also tried to keep it low-key in dealing with the youth group, because I feel that's not what our focus should be right now.  However, this walk was just too good to pass up!  Our teen program runs with the school year, so we are staring to wind down.  We had wanted to get one or two more events in, and a most of these kids love service events.  Furthermore, many of them are athletes, and a walk is right up their alley.  So, I talked to a few people at my church, including the pastor, to ensure no one feels like I'm just trying to promote my own interests, and we all agreed it was an appropriate event to offer to the group!  Naturally, I wasted no time in getting that organized and the word out to the teens:)  Now if only they show up...but that's another post:) 

Lastly, I decided to at least pass the word along to my alma mater.  As I've mentioned, I worked closely with this one office there to promote awareness, and some of our events were extremely successful.  The university as a whole prides itself on the network it maintains between current students, staff, and faculty and alumni.  So, I sent a message to my contact within that network about this walk.  We had discussed how much the health-conscious campus would respond to a walk in support of a condition, but most of the walks fell at inopportune times in the school year.  This one, on May 1st, just might have a shot at success:)  The office was closed for the holidays, so I'm still waiting for feedback on that one.

Whew!  Well, I'm exchausted!  I get a huge rush when I have the chance to get a synergetic flow going from multiple sources at once.  My employer (in multiple ways), my parish youth group, possibly my alma mater, and naturally, my very supportive friends and family all interested in this goal?  It's almost too good to be true!  Honestly, I'm not even that focused on the fundraising aspect - I mean, goodness knows I understand the importance of this funding, and hope I can round up a respectable donation for the group through my page.  But, as I said in the beginning, right now it's all about awareness.  Most people who I've spoken to about this walk, including my friends and family, hadn't known what Sjogren's is.  Some didn't even know it was the name of one of my diagnoses.  But they do now, and they're telling other people. 

I dream of big results - of acceptance and every person I meet on the street knowing what autoimmune conditions are and amply funded research and support groups every day of the week - but I know it can't start there.  It has to start with the person who says "what is that?" when I tell them about the walk.  It has to start with coworkers seeing that the firm supports me with my disabilities instead of trying to eliminate me.  It has to start with teens knowing that the people in their community face an endless array of challenges that they may face someday too, but that these people stay positive and actively work toward better lives for themselves and each other.  To me, this is truly one of the most exciting things in the world, and I am grateful beyond words to be a part of it.  Thank you all for your support, too.  Please continue to help spread awareness!


  1. It sound fabulous ! It must be a really hard work. I'm impressed by everything your doing.

  2. Jen you are phenomenal! I don't know how you do it all but please keep doing it :)

  3. Go Jen! Awesome work! Did you get the informational packet from the Sjogren's syndrome Foundation in the mail? It was interesting and included sample informational sheets about Sjs. They were part of a fund drive for research monies.

    Go get 'em, girl!

  4. Thanks everyone:) It feels like it goes so fast, because I am SO SUPER excited about the whole thing! Every day I get new ideas and am pulling on more connections for the walk!

    Julia - no, I didn't get a packet. I wasn't registered as a member, is that maybe why? I did find some really cool "cheatsheet" tips on the site, though!

  5. don't give up the good fight Jen... I've got your back. People are just lazy... People with invisible illnesses (I may be one of them!) need more people like you :)


I'm excited you're here - and can't wait to read your comment!

* Transparency Note *
If you are commenting as someone affiliated with a professional organization to promote said entity, please identify yourself as such. I'm not opposed to hearing from you or your organization, but must ask that you provide transparency by stating this for my readers and myself. Thank you for your compliance.