June 6, 2011

Speaking For Myself ... Whoever That May Be

Photo found here.

I am not my illness.  I am a wife, a daughter, & a granddaughter; an auditor, a leader, & an activist; a lector, an extraordinary minister of Holy Communion, & a youth minister.  I live to laugh, cry at the drop of a hat, and talk to my pug as though she were human.  I love to buy shoes, am fascinated by tiaras, and think it’s fun to impress with acts of physical strength.  I plan to be a mother, a community leader, & to make a difference in this world.

I am not my illness.  But neither am I the person I was before diagnosis.  I still love shoes – but the ones I choose accommodate my tendon and joint problems.  The strength I would show off is gone – now even washing dishes or carrying bags is a problem.  My illnesses shape my physical self, as well as my goals in life because of what I go through.  I was a leader as far back as I can remember, but now I also lead other patients and disability activism groups.  I still plan to be a mother, community leader, & make a difference.

The affirmations we hear in our communities are legitimate, but I have concerns about their accuracy.  The two I hear most are "I am not my illness" and "my illness does not define me", and they evoke an emotional response for me.  I am only speaking for myself - I can fathom many reasons why (and how) both statements may be spot-on for a lot of people.  But while I believe I am not my illness...I do think my illness defines me, or at least many things about me.  And that that's ok.

I am not my illness, but you must meet Sjogren's to have met me. 
For one thing, you simply cannot talk to me for more than a few minutes without me bringing it up.  So by default, you will meet it - I will introduce you. 
Stay by me a little longer, and you'll learn about its personality - when it wakes up on the wrong side of the bed, I have trouble moving.  When it has a mood swing, I go from all-in to last-leg.  When its feeling benevolent, I get in a long walk. 
Then, if you're really loyal / curious / masochistic, you can stick around through the flares and really get up close & personal.  That's when you can make friends with greasy hair & all-day pajamas because I can't handle the exertion to take a shower, or relieve Shawn of his usual duties as butler because I can't get up for a drink/snack/tissue/medicine/ToSaveMyLife. 
And Sjogren's is just one member of the entourage; "I'm freezing" and "I stood up and am going to pass out" are just a few calling cards left by Dysautonomia.  "Please don't so much as put your finger on my shoulder" (Fibromyalgia) also likes to hang around. 

I am not my illness, but I am at times exhausted, mentally foggy, achy, weak, light-headed, and yes even scared.  Those aren't my "normal" traits.  I prefer to over-schedule, be quick to process information, feel strength coursing through my body, horse around, and take on any challenge I can find.  How could I say I am not defined by my illness?  To me, that would be as silly as saying I'm not defined by my race, religion, or gender.
When we say "my illness does not define me", I wonder if what we really mean - if the message we're really trying to send ourselves - is "my illness does not confine me".  That makes a lot of sense to me.  One of the things I fear most in life is becoming confined, restricted, or controlled.  Sitting in a doctor's office at 15 being told I shouldn't continue with the thing that gave me the greatest joy & pride to that point, Color Guard, that's exactly how I felt.  Maybe because I was so young I hit a good mix of rebellious and malleable; I didn't passively accept anything, but also learned over the years to pick and choose my battles.  That's a conversation for another day - but my point is I do not believe I am confined by my illness; I am still in charge, still do what I want, still control my future.  I just do it acknowleding an influencing factor.

I am not my illness.  I am not confined by my illness.  Sometimes, I am defined by my illness.  I am an interesting person, active in the world around me, & happy with most things about my life.  I have my soul mate, a career I love, & a future to look forward to.  I am a Sjoggie, and that's ok with me.


  1. I'm not my illness, but it's part of my life. That's true. I have Sjogren, but it doesn't have me !!
    There is actually a advertissement campaign in France against how people see the cancer saying things like: I'm a person not a cancer. Here it's the same things, I'm not a Sjogren. Even if it affect my life. It's not my life, is a part of it, like others (more pleasant) elements.
    I love the way you talk about this, this post is really great !! You have talent.

  2. Jen - Excellent post. Excellent perspective. Thanks.

  3. Gosh, I was the same age when I started having symptoms. My doc told me I was "doing it for attention" instead of looking for a diagnosis. (Like I could fake my saliva glands being the size of walnuts!)
    I love "My illness does not confine me." That is a great affirmation that makes a lot more sense to me too. Gonna put it on my post it noted mirror now!

  4. That was an excellent post, so well written with such insight.


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