5

I receive a lot of comments about my condition and situation.  Recently, I've experienced a lot of negativity from bystanders since I started volleyball and being active in my old lifestyle.  Here are a few that have hit home.  People with chronic pain having feelings too, you know.

1.  I am judged.
"How come you can play volleyball but still be in so much pain?"

My pain is always present.  The severity of pain changes.  The location of pain is random.  As I sit here typing, I have an ice pack resting on my collarbone that feels like it's being pulled out by a pliers.  My chest is tight, making it hard to take a deep breath.  My fingers on the affected side are trembling and weak, causing several typos that I eventually have to fix.  I can't make a strong fist.  However, my mind is as ease as I listen to Ed Sheeran Pandora with the scent of Tiger Balm lingering out of my clothing.  I am happy.  I am alive.  I am still  a human being.  It hurts when people judge me without looking at the bigger portrait first.  Picture your prized possession in life.  Something that brings you incredible satisfaction and pure joy.  Hold it in your hand.  Now picture a shadow coming out from the darkest depths of hell and taking it from your grasp, swallowing it whole.  That's what would happen if I had to give up volleyball.  I wouldn't be me anymore.  I wouldn't be Kelsey.

2.  I am bullied. 
"How can you honestly be in pain?  You've got to be faking it."

*Insert a huge amount of sarcasm here*
Yes, I have been ruining my own life for 4 years.  I have lost friends, family, boyfriends out of pure laziness.  I have put my career on hold just to move back home and become miserable.  I sit at home and watch movies because I find being alone enjoyable.  I go to all these doctor appointments because I love sitting in ugly gowns for the hell of it.

The truth is, this condition has taken over my life for the last 4 years.  I have chosen to cut communications with negative people in my life, and some have chosen to cut me because I am just too much to handle.  I needed to move back home for the flexibility of my job so I can take off for appointments and also so my family can drive me to distant appointments.  The flare-up days make me lay in bed, unable crawl to my living room or open my eyes to even watch TV.  I mentally have to prepare for each appointment.  I have to prepare for a let down, or a referral to another doctor that won't know anything about TOS.  I have to prepare to re-tell my story to both the nurse and doctor.  Negative thoughts arise about people that have hurt me in the past every time I repeat it.  It's extremely exhausting.

3.  I've been given unrelated advice.
"One time I broke my ankle and physical therapy and Advil really helped me.  Have you tried that?"

I am extremely grateful for people wanting to help.  I am humbled when people come of the darkness to offer their advice.  But until you have a chronic pain condition, understanding will never fully be 100%.  Having a chronic pain condition is like a bird having a broken wing that cannot be mended.  They are able to live.  They are able to get off the ground every once in awhile.  They are still able to walk around.  But will never have 100% quality of life.  I have tried just about every outlet for pain-relief.  I learn to live with it.   I can't have just one primary doctor taking care of me like you would for a cold or broken bone.  I have to bounce around to several doctors because several health factors are present.

4.  I wouldn't wish this condition on my worst enemy.
"Don't you ever wish people would get this for a day just so they understood?"

The quote has been said by my lips out of anger a handful of times and has also been said from many fellow chronic pain patients.  However, I regret it instantly after.  I could never picture one of my friends or family members suffering this much, let alone the nasty people that have tainted my life.  The journey I've gone through to this point has been miserable and exhausting.  Like a lot of TOSers, people around us don't understand fully what we go through.  So it's incredibly hard not to wish negative thoughts on others that brush us off.  I am a forgiving person, but some comments are still burning my blood.  Instead of being a pushover to forgive, I simply rise above and write it off as ignorance while sending them positive vibes to their lives.  It's the healthiest way for me to move on.  In the future, I hope there is more awareness for this condition, let alone all of the other invisible illnesses/conditions. For now, I will deal with the ignorance with equanimity.

5.  I haven't given up yet; and I don't plan to.
"Don't you ever feel like enough is enough?  Don't you feel like just giving up?"

Truthfully, I am strong, even if I am broken.  I've endured lots of pain and suffering.  But who hasn't at least once in their life?  Sometimes I cannot get out of bed because the depression and pure exhaustion and the condition ties my wrists and locks me in my room, away from the world.  Sad to say, but I am incredibly used to the pain, as irritating as it is.  It's my least concern.  The greatest pain and suffering comes from the bullying, judgement and misunderstanding I experience.  It takes such a toll on my mind and body.   Being put down is a sick thing to do.  The mind is left with such a sick and foggy feeling.  However, the mind is a powerful part of the body.  The audience is watching, standing by waiting for me to crumble to the ground.  Waiting for me to break and give in to the dark depths of my pain, anger, sadness and exhaustion.  I'm not quite at that point yet.  So TOS, you can try, but you can't break this girl.

Equanimity,

Kelsey