So Many People Think I'm Crazy - But I Had That Ruled Out

 "Thanks for caring, because so many people think I'm crazy - but I had that ruled out."

This came from Sarah, a friend seeking a diagnosis for her invisible illness, while she was in the emergency room for the umpteenth time over as many months with crippling pain and other mystery symptoms.  She texted me because the nurses in the department were making comments about seeing her "back again" and the doctor wasn't considering any new advice, tests, or treatments.  It's a problem so many of us have been through (and may go through again someday).  But Sarah knew she had someone - a network of people, really - she could reach out to that would remind her she's worth the fight and in very good company.  She had a place to go to recharge emotionally; to be reassured others go through the same challenges and find answers; to share the humor we must use to keep this experience in it's place as a part of our lives without defining our lives.  It's great she can put this humorous spin on a challenge common to us 'sickies', and it's made even more powerful by sharing it with people who can laugh at it together.



Image found here.

This is my 100th post.  I've been a "blogger" for 2 years, 1 month, 3 weeks, and 6 days.  I'm in shock.

I'm not a writer.  I hated journaling assignments in school, and never kept a diary.  Technical or persuasive writing are fine but "creative writing" always made me cringe.  The last creative writing project I remember not hating was a story I wrote in 1st or 2nd grade called "*69" (it was a mystery...noo noo noo noooooo....).  And introspective writing just made me uncomfortable.

But I've come to realize this blog isn't about introspection.  It's about a connection with Sarah, and Julia, and Amy, and the other Amy, and Alicia, and Lisa, and the other Lisa, and Genevieve, and Annie, and Jen, and Jenni, and Mark, and Phil, and Mike, and Tiffany, and Casey, and Ellen, and the dozens of others too numerous to list.  It's about a relationship with organizations like KPMG, the Sjogren's Syndrome Foundation, the Leukemia & Lymphoma Society, WEGO Health, ImageThink, TheBody.com, the Advanced Learning Institute, DTC Communications, Springboard Consulting, THINK-Health, Klick Pharma, HealthCentral, the Digital Health Coalition, Rest Ministries, and ePatient Connections (again, among countless others).  Above all, it's about putting these networks to work for each other.

My posts discuss communities out there, information you share with me, conversations happening all around us, and sometimes even your own words and messages.  Sure many posts are in my voice, but it's only by telling you about myself and reading about you that we bond with each other.  "My" experiences aren't about me as Jenny, but me as a patient, employee, student, volunteer, wife, daughter, and activist. 

I mean it when I say "UII" is about "we", the community of chronic patients, family, friends, and caregivers who represent so much of our society.  In meeting you through "UII", I've gained so much.  I have new insight into my own ideas and aspirations - like confirming that I should continue "UII" and take it to the next level.  You've helped me refine my goals - like realizing it is appropriate to narrow the scope of "UII" enough to provide more focused and valuable resources.  You've shown me how little I know on my own - like the value of social media outlets and health options I never dreamed existed. 

Like Sarah, I need to thank you, for sharing your experiences, knowledge, dreams, fears, and lives with me.  Thank you for answering questions, steering me in new directions, and bringing others into the conversation.

Thank you for reminding me I'm not crazy when, like Sarah, I find myself surrounded by those who would convince me otherwise.

Thank you for 2 years, 1 month, 3 weeks, and 6 days of the best education on Earth.  For an educational program from which I hope I never graduate.  For great laughs, better ideas, and blessing me with your friendship.  For loving me for the little I am, calling me to be more, and never making me feel that I'm not enough.  You're special people who take "UII" from a fantasy of mine to a reality of ours, and I'm glad we've met.

After the Honeymoon: Chronic Illness in the Workplace

October is National Disability Employment Awareness Month (NDEAM).  Therefore, it seemed like a good time to tell parts of my story relating to being "disabled" with chronic invisible illnesses as a young adult in the workforce.  A lot of the patients I hear from faced the challenges of developing these illnesses in their 40's (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce.  At 45, it's hard enough to give up your job - at 15 (age at diagnosis) it's really not an option.  Hopefully what these patients went through can help me in this challenge.

In my last post, "Once Upon a Time: A Tale of Disclosure", I discussed my decision to disclose my illnesses to my firm before I was hired full-time.  Now, I'd like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation.  To be clear, I'm not suggesting all other chronic patients follow in my footsteps, but we can learn a lot by examining the way other people make these decisions and that's what I hope you take away.

Cartoon found here.

When the honeymoon was over...
I spent my first 6 months or so as an auditor trying the full grind to see what I could handle.  By then, I realized the travel was one of my biggest problems - at least, of the problems we could do something about (as opposed to the excessive overtime that's part of the biz - my rheumy still isn't happy with me about that).  Up until that point, my "disability" had been mostly talk; the firm knew about my medical situation since I externed (the summer before my internship) but I hadn't needed any real accommodations.  We knew I was different in theory but I had acted and been treated like anyone else, so far.  In a way, this was like a couple's first big financial decision - it can solidify their relationship or send them running for the hills and the nearest divorce attorney. 

With this in mind, I wanted to come to the table asking for an accommodation to reduce my out-of-town travel with some possible solutions in hand, so I developed a list of clients in my preferred industries which were local enough to avoid an overnight stay.  I think this is when I developed my concept of "making accommodation feel like collaboration".  While I never actually ended up on any of those engagements, it showed the powers that be I was only looking for them to meet me halfway.  Which they did.

There are, of course, imperfect moments.  I've dealt with some team members who could stand some serious sensitivity training (not to mention an education in health issues in general...or even just in manners).  As I mentioned, the hours are an ongoing struggle.  Even as I enjoy the support of the rest of my coworkers allowing me to advance on par with my most ambitious peers, I also face the other edge of the sword with dramatically increasing responsibility (read: stress, anxiety, and reduced tolerance for foggy brain days).  But I couldn't ask for much more than an environment in which I can safely and comfortably discuss my medical challenges even while managing local and national projects which just happen to be part of my dream.


But not everyone has found their Prince Charming.
I know I'm one of the lucky ones.  I know some day my luck may change.  I know some people are ready to throttle me for telling this tale.  Knowing how many of my "spoonie" peers are in the exact opposite (and often sinking) boat makes this whole thing a little bittersweet.  I'm not oblivious to the horrific injustices so many of you go through for employment - if you even can work at all.

I can only explain my decisions.  I wanted you to know, especially during National Disability Employment Awareness Month, WHY I disclosed to KPMG.  It was a damn big risk- I was already taking an extra year and most of my student loans to graduate college, if I had blackballed myself among the top employers for graduates I would be in a BAD place.  I didn't make the same decision to disclose to my employer during college (when I worked part-time for a small construction company).  And I don't suggest that everyone else should follow my lead. 

But eventually someone has to take the risk.  It's not just for myself, it's also for everyone else who needs their job.  If we all hug our cloaks of invisibility tight for fear of what society's ignorance will do to us, we only make it worse.  Those of us blessed enough to have a chance to cast off the cloak, I believe, have the responsibility to do so, and fight ignorance with information.  And above all, I want you to know these situations and employers do exist.  KPMG is just one of the "good companies", but since job seekers don't have to disclose, it's hard for these companies to reach us.


Look for more posts this month about my experiences as an employed person with a disability.  Have your own experiences, thoughts, or ideas to share?  Leave me a comment, or better, write a post and comment with the link!  Mine is only one perspective, we need many to get anywhere.

Once Upon a Time: A Tale of Disclosure

"If there's something you're passionate about, talk about it constantly.  Tell everyone you meet, every chance you get.  You never know who will be that connection you need; who is in a position to help make it happen; who you will meet that has that passion too."

This is the best piece of advice I have ever been given.  This gem came from a partner at KPMG who I met during a networking event as an intern in the summer of 2007.  It is, as are most strokes of genius, extremely simple.  You don't need to explain the logic behind it, like that feeling you have in your heart when you simply know something is true.  And quite honestly, it's pretty funny that someone had to tell me to do this (I mean really, am I ever NOT talking about a passion?). 

But as obvious as this advice is, when your passion is something as emotionally and socially charged as disability and health issues it's easy to repress instead of express.  We know that feeling when the person we're speaking to is tired of hearing what we have to say.  We've lost friendships and relationships when the pervasive effects of our conditions were too much for someone else to handle (ignore the fact that we have to handle it, like it or not, every day without reprieve).  We dream of a chance to forget and experience life without that chronic lens.  If so many people - including ourselves - are sick of hearing about it, why would we bring it up to strangers?

I bring it up because for me, invisible illnesses & disabilities are not something I live with privately.  They are a passion, and part of my dream.  I want to build a network, support system, resource base, and education program for people affected by chronic and/or invisible illnesses.  You know this dream as "UII". 

That summer, UII was little more than a small Facebook group without much activity.  I had begun working with the Office of Health Promotion at Villanova on my first IRL (In Real Life) awareness event to be held in October, 2007.  I knew I had a passion, but was certain of little else - I didn't know if I could be successful in this work, or even how this work would take shape.  But I was given advice and I took it to heart.

At the end of the 10 week internship, I had an exit interview with a partner from my alma mater.  He was very interested in my 'big picture' plans.  KPMG is one of those places that likes people with plans, goals, and passions - we are hard workers and go-getters.  So, when asked what I wanted to do in the long run (it's an accepted fact that most people join the Big 4 to prepare them for something else), I told him my passion.  He responded with the name of an author (and as I would now term him, a health activist) who was writing on a theory about the link between stress and chronic illness.  And some words of support for my plans.  And my offer to join the firm.

And so we've lived (mostly) happily ever after, KPMG and me. 

I'll be honest, it's more like a real marriage than a fairy tale:
For better (the Disability Network) or worse (busy season hours & flares),
for richer (this year's raise) or poorer (last year's raise),
in sickness and in health (well, that's a gimme)...
And there are days I think it will be death that will do us part.

But I'm still here, kicking and screaming (yup, this really is just like a marriage):)
(Stay tuned for part 2, where I discuss some of my experiences actually working for the firm and the man-on-the-ground challenges II's bring!)



Image found here.


Enjoy October, which is National Disability Employment Awareness Month.  I have some special topics in store, along with those I've already promised to cover.  I wonder if I can pull off a mini-series here...hm...guess you'd better stay tuned;)