October 30, 2011

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.


  1. I loved this post because I can, on many levels, relate to so much of it.

    I began blogging for ME and because I figured the amount I needed to talk about my auto-immune disorders was more than those closest to me needed to hear it daily. But along the way I've become part of community that works together. I learn so much every day from others who are going through things similar to me or perhaps very different but where we can find some middle ground.

    Congratulations to you on your anniversary (!) and on creating community with others. Through you the web, and the world, is a better place for those of us with invisible illnesses.

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