Dislosure Part 2 – Friends and Family

July 6, 2011

Disclosing that I have chronic pain brings feelings of vulnerability and fear.  Will I be rejected or stigmatized?  Disclosure is complicated in many arenas.  Though it brings exposure, honesty and change, the individual effects can be both positive and negative.  Disclosure might be a comment that reveals that I have chronic pain, or a deep discussion where I share about my struggles and blessings of living with chronic pain.    

When disclosing with friends and family, I often don’t receive the desired result.  Some will express sympathy, yet it can be hard for all of us to enter a reality that is so remote from our own.  I do this when people share something I can’t completely grasp.  It isn’t always personal.  I may not connect the significance of what was shared nor the magnitude of the pain.  Other times, I may be feeling more self focused and self protective and fear entering their world for the unwelcomed feelings that appear.  I have to be careful of my own expectations of wanting people to understand something, especially when I can be guarded in my conversation.  The best validation for me usually begins with self affirmation, and then taking in the care of others even when it isn’t expressed in the way I would like. 

Disclosure with my loved ones wasn’t at all what I anticipated.  As a young child, I had day dreams about having an illness, injury and/or death that would bring greater love and attention into my life.  More often than not, my pain brought the opposite effect.  Close ones would ask questions, give advice, make judgments, and/or distance themselves from me.  Some of this was typical of the busyness of our society.  Other times, deep sharing, resulted in outward compassion through incredible support and service.  I had several friends make great sacrifices to help me during the more difficult times.  The most common response I received was “but you look good”, generally meant as a compliment, yet had little to do with my chronic pain. 

“Looking Good” had its own set of issues relating to disclosure.  Because I look healthy, it doesn’t always make sense the choices I made to reduce my pain.  I can laugh at the image of me in church sitting slouched in my chair (while others were standing) with sunglasses on to protect my eyes from the lights that were hurting my eyes.  I looked like a lazy, rebellious lady, instead of a person willing to do what was needed for the spirituality I desperately needed at this time.  I have had many other situations where I have needed to sit, move around or even lay down to reduce my pain and/or preserve my energy.  These situations helped me to grow past my worry about being watched and misperceived.  I can still feel self conscious, but do what I need to take care of myself. I learn to take risks to keep myself engaged and active which helped reduce my own pull towards depression and anxiety. 

Disclosure for me is more about the particular connection point, not necessarily related to the closeness of the relationship.  I have friends and family where we connect around our kids, spirituality, shared experiences, passions, beliefs, etc.  Discussion of my chronic pain doesn’t seem to fit into the picture.  It can be because this is outside of the scope of the relationship, and/or I want safe places to not focus on it.  It is the unique friendship that is able to go beyond the context and branch into new territory.  Sometimes this works, other times we go back to the familiar.  For some learning about my chronic pain in greater detail makes a shift in their understanding of my experience, for others they may consider it as a minor annoyance for me (like a sore ankle).  The greatest disclosures bring deeper sharing from the person I am talking with, where they share about their own struggles and our bond becomes greater.  For those closest to me in the universal sense, comprehension comes together like a puzzle, each sharing they seek to grasp, will gain a clear picture even if many pieces are missing.  This of course applies to all of us.  I too, must seek to learn about others, to hear their disclosures – of pain, of fears, of dreams…so I can see the true picture of who they are not what I want them to be. 


On The Field

June 26, 2011

I can feel the pain intensify as I am standing in place, listening to my husband give soccer instructions to 12 girls.  As a co-coach I need to pay attention so I can implement what he is teaching.  I move around back and forth, as this reduces the pain that is circulating through my body.  I ignore my feelings of paranoia, concerned how I might look to the outsiders who don’t know of my illness.  I can feel the warmth of my body, as my fever begins to spike, like a premature heat flash that randomly appears.

As the instructions are finished, I recruit half of the girls onto the opposite player field.  I try to remember what I am supposed to do, as my fatigue and mild ADD seems to muffle even the best of teachings.  It is similar to living with a constant flu, with the aches, mild fever, and tiredness.  I attempt to implement what I can understand of the drill by watching my husband from across the field, and making up the rest.  I am less aware of the pain, as I am running around chasing after flying soccer balls.  My fever seems to level off, though I find it difficult to breathe when I am running too fast.  I slow down my pace and send Sarah off to collect the ball that flew past the goalie net.  I am grateful for the sun that is shining today, as the cold weather makes my fingers and toes go numb, which makes kicking a soccer ball painful.  I look up, and see Kathy make a goal.  The sounds of laughter and cheers from her team mates, brings me into the moment.  I smile and tell her “great kick at the side of the goal”.

Having chronic pain can effect greatly what I do, even on the soccer field.  When I become more in tuned with my own pain, I also take in more of what is around me.  My meditative state allows me to go deeper into the pleasures around me, as well as accept the pain that often comes with it.  These moments hanging with my soccer girls are treasures I will keep in my heart, the blessings that I am aware of, that bring life to today.

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