April 12, 2011

Can I Be a Survivor?

Image found here.

As you know, I have a team for the Philadelphia area Sjogren's Walkabout on May 7 (shameless promo: feel free to join or donate here).  While I have a few things working for me - loyal & supportive family and close friends as well as the support of my employer - I am still struggling a bit to get people beyond that close family/friends circle to even hear me out.  In my frustration, I thought about the various other causes I've seen promoted (and supported) on Facebook and other places...and noticed a trend.  As might be expected, most of those causes were cancers - breast, blood, even uterine.  What makes cancers more attention-worthy than Sjogren's (besides the fact no one can pronounce 'Sjogren's')?  Well, there's the basic element that cancer is more well-known than an autoimmune disease (please note: I'm not suggesting the general public understands what it's like to be a cancer patient, but if you say "cancer" to someone they have an idea what's going on).  But...I think there's something more.  And that's when it dawned on me - most of the people I know participating in these events are (or are representing) a Survivor.

With some exceptions (such as my friend Bridget who has Fibromatosis - a chronic cancer which will continue to cause tumors throughout her life), most cancer patients are striving to defeat their illness.  Once in remission, they live with the ongoing risk of another bout but also the hope that it may be over forever.  We describe their experience as a "battle" with cancer, their role as a "fighter", and their remission as their "victory".  Ultimately, those who "defeat" their cancer are "survivors".

I found this definition for 'survive' on Merriam-Webster's Medical Dictionary:
"to continue to exist or live after (survived the stroke)"

But what about me?  I too hear the terms "battle" and "fighter"...but I cannot be "victorious".  I can never be a "survivor" by this definition; my Sjogren's (and other diagnoses) are forever.  I'm what I call an optimistic pragmatic - I hope for a cure in my lifetime, but I live according to reality as it stands today, and today I cannot expect to "defeat" my Sjogren's the way someone might "defeat" cancer. 

Then I found this definition of a 'survivor' on Google's dictionary:
  1. A person who survives, esp. a person remaining alive after an event in which others have died
  2. The remainder of a group of people or things
So far, sounds a lot like Merriam-Webster's.  But they listed one more:

    3.   A person who copes well with difficulties in their life

Well, now we might be onto something.
Before my mother or husband comment about the chronic whining, wimpering, and neediness that come with my chronic illnesses - I'm not an ideal patient.  I complain from time to time, and certainly require far more assistance from those I live with than any of us would like.  But that being said, from a big-picture perspective I think I'm doing pretty well so far with "coping well with difficulties in [my] life".  I'm holding down a (very) demanding job, finding both purpose and support through my health activism, and even manage to stay involved with my parish & the youth group I run.  I come home to a decent (if imperfect) apartment in a neighborhood I love, to my supportive husband and ever-loving puppy.  When I survey my life on the whole, I am happy.

My medical prognosis is scary.  Much of it is unpredictable, which means any long-term plans I make must come with contingencies.  It's been a decade since my SjS diagnosis, and in that time I've begun to see the permanent damage it can cause.  My impaired salivary glands cause extensive and ongoing dental issues along with the loss of my ability to sing, increasingly scratchy voice, and more and more difficulty speaking without sipping water.  At church, I always try to receive both the host and the wine (the Body and Precious Blood) because without the wine I can't get the host down.  Years of varying levels of tendon & joint inflamation have severely reduced some of my physical abilities including most common forms of exercise and make it difficult for me to wash dishes, carry boxes, or even hold files or binders at work.  And of course, the list goes on from there.

But after this 1st decade I have new abilities, too.  I can problem solve around almost any physical limitation.  I no longer fear the dentist (how can you be afraid of a chair you've spent countless hours in), and I've learned to network like a pro (these networks are vital to a health activist, and especially one with an agenda).  Some confusing life decisions have a new clarity since I know I may not be able to do it all.  Even my work ethic improved, because I learned that a) doing my work now while I can may avoid a problem if I can't later, and b) stress is my ultimate enemy so anything I can make go away is worth doing.  I'm through looking for silly shortcuts (like not putting on gloves before going outside), and I can easily tell who is my true friend (a person's reaction to my medical situation is an acid test - no one can 'fake' understanding or caring about it).

So, am I survivor?  Are the things I've done so far enough to earn me that title (getting through high school and college, succeeding at my 1st job, the health activism projects I do, etc), or is it an honor reserved for those who have seen a challenge through to a stopping point?  I'm not being funny - I would never want a recongition I didn't earn.  But if it takes reaching an illness stopping point, I want "Loving daughter, wife, mother (I hope), and SURVIVOR" on my headstone - because there is no other finish line in a life with Sjogren's. 

If I'm not a survivor...what am I?  An ongoing fighter, a tireless warrior (hm, I almost typed 'worrier'...Freudian slip?)...perhaps, but these titles bring an air of exhaustion & imply that one day this 'fighter' may be cut down before the 'war' is won.  I'd rather not see myself as someone who has spent my life fighting so that I may continue fighting until the day I die.  I'm not a survivor, at least not as society would perceive it, and I don't want to be an eternal warrior.  On my team page...how do I describe myself?  Is there a word I can use to evoke the pride & purpose of the word "survivor" which is appropriate for my situation?  And, will there be a day I can call myself a survivor?  Or moreover...a day when society will care about my 'battle' even without that powerful word?

(Note: I respect & recognize those who are survivors, of cancer or any other battle.  We have many survivors in my family, and I was just as relieved when they earned their 'titles' as everyone else.  I don't begrudge them the support they get for even one moment; I want to know how to open people's eyes to the countless conditions we CAN'T defeat, for we need just as much support and possibly for a longer time.)


  1. When I last saw my oncologist he recommended that I come up with a new term instead of "fight" to describe my cancertastic life, so this post speaks so intensely to my heart right now. I haven't come up with anything awesome yet, but I will surely keep you posted :)

  2. So well expressed, Jenny. I think most people living with some kind of chronic illness(es) do think of themselves as survivors. You put up with so much everyday just to get through your day that you survive another day, another episode, another flare or new symptoms. We are like warriors facing battles on a regular basis. I am a warrior,a worrier and a whiner!

  3. I don't know that "survivor" is the right word. I think you're a "thriver".

    thrive (thrv)
    intr.v. thrived or throve (thrv), thrived or thriv·en (thrvn), thriv·ing, thrives
    1. To make steady progress; prosper.
    2. To grow vigorously; flourish:

    You manage to squeeze every drop out of the life you have. A survivor exists in spite of everything around them. You do more than exist. You have a career you love, good friends, a wonderful family, and an amazing activist spirit that inspires people with similar struggles. So many people with invisible illnesses hunker down for the journey and give up hope. But not you. You fight it tooth and nail. You're too stubborn to give in and you built a life you love in spite of it all. You managed to do all this in a hostile environment. Whining comes with the territory. We all whine from time to time. Even people who don't have a chronic illness whine. Certainly we have the same right sometimes?


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