March 9, 2014- Those of us working in corporate wellness can easily get lost in the numbers, participation rates, outcomes, ROI etc. However, it is essential to see the people behind the numbers.  This post is dedicated to Jessica Hogan, whose battle with her disorder is a reminder why we need to look at conditions through a lens of compassion and practice gratefulness for our bodies’ natural abilities that we often take for granted.

My Cousin, The SurvivorJessica2

by Daina Havens, who works as a Wellness Specialist at a large regional health insurer in Pennsylvania

As a wellness professional specializing in preventive wellness program communications, it’s easy for me to list symptoms of chronic conditions on promotional flyers or detail them in PowerPoint presentations for seminars. It’s not easy, however, to learn that my younger cousin has been living with the symptoms of a painful chronic illness for almost a decade… and I had no idea.

For years, I heard whisperings in the family that Jessica was “having pain again.” I was preoccupied with college when she was first diagnosed with a chronic pain condition; I knew she had made numerous trips to Children’s Hospital of Philadelphia (CHOP) growing up, but I only truly understood the complexity and reality of her condition and how it was affecting her when she found the drive to push through another painful treatment session by documenting and sharing her experiences on social media just a few weeks before her 20th birthday. Here are some inspiring words she shared with someone who had reached out to her for help:

My name is Jessica Hogan, also known as @yourfellowyogi on Instagram. As I write this, I’m in a hospital receiving treatment for an incurable condition known as a few things: Reflex Neurovascular Dystrophy (RND), Chronic Regional Pain Syndrome (CRPS), or Amplified Musculoskeletal Syndrome. These are all medical terms referring to an unbearable amount of pain that is chronic throughout your entire body. The signals from my brain are telling my body that I’m in pain, while my body is not able to communicate back, making me in extreme pain 25/8 (because there is literally never a day off). So the nerves in my body attach to the blood cells and suck the oxygen out of them, which then makes my muscles suffocate my bones. As you can probably imagine this is a pretty rough condition. Worst part, no pain medicine works… Ever.

I was diagnosed when I was 11, which ended up with me being completely full-body paralyzed. After 8 months of not even being able to wear clothes because the sensation on my skin was so unbearable, I received treatment and got the condition to lay dormant. The next time it acted up was during my senior year of high school, I started having uncontrollable seizure-like convulsions, which then led to my body slowly shutting down. After 5 months of fighting, treatment finally worked again. Then I decided, due to the fact that most of my childhood was filled with pain, I would run from my problems and accept a rowing scholarship to the university of Oklahoma and move from my family and friends in New Jersey. I was so excited to start fresh, with no one knowing me as the “sick girl” I thought I was in the clear. To my distress I was wrong. My mom had come out to visit me for my first rowing race. It was in the pouring rain and I began to feel sick. The next morning my mom found me in a coma. Brought on by my condition, my brain shut off due to the extreme amounts of pain I was in. It took 5 weeks to wake up, and until I found yoga, every night I experienced night terrors, afraid I would never wake up in the morning. The pain left once I woke and I was able up commit to yoga and rowing and school, and attempt to enjoy my freshman year now known as “coma girl”. But the names didn’t matter I was just glad to finish my first year with all A’s and knew I had an amazing team and friends that had become more like family. Home wasn’t New Jersey anymore, it was in Oklahoma, no matter what.

Well this year is my sophomore year, and a few weeks ago I started to experience some pain throughout my left side. I immediately recognized it as RND and decided to get help before it was too late. Well before I knew it, the left side of my body lost all nerve function and left me alone and stripped of my independence once again, and wrecked havoc on my life. Now I’m in the hospital receiving treatment again. Oh and if you’re curious, treatment consists of pushing past the pain, and retraining your brain signals to send the right messages and recognize the difference between real pain and fake pain. It is very painful and seems almost impossible without proper medical training. If you need an example, it’s like trying to train your body not to get a pimple, or to stop your nails from growing. Get my point? It’s so painful and has caused me to stop my practice of yoga, stop rowing, and stop school. I’m fighting every second, minute, hour, day, month, year, and most likely my life. I’m ok with that because it has made me into the person I am today. I live with an invisible illness, but I survive through the people I surround myself with. I have a great life, no matter what pain might bring. I will always see the glass as half full because I know what it’s like to walk one day and be stuck to a wheel chair the next. I will continue to fight, not only for myself, but for my family, friends, teammates, and my fellow survivors of this dreaded disease. Please help me to spread awareness for everyone suffering from a chronic pain condition. I found some relief and life when I found yoga and maybe, with your publicity, we can help find a cure! Thank you for your time and you can again follow my journey on Instagram (@yourfellowyogi). ~namaste~ and I truly hope you can find it in your heart to help me help others. Share my story. If it even gives one person hope, that’s more then I could ever ask for.

-Jessica Hogan, fighter, survivor, and friend

I spoke with Jessica after her recent release from the hospital to understand how she was feeling. Here are her thoughts:

It’s a relief to know I can continue to be a full-time student, athlete, and yogi but I’m still haunted by the fact that this condition can come and go anytime it wants. I’m doing my best to stay committed to my health, body, and mental health and I’m going to continue fighting this condition every day. The best thing I get out of this experience every time is perspective. I can really take a step back and see what’s important in life and what I need to do to stay happy. At the end of the day I feel accomplished before I go to bed and I am proud of myself for deciding to stay [at college] for my [rowing] team. One day I will look back and it will be one of the significant decisions in life I’m glad I made.

Understanding her condition, as well as her passion to spread awareness and help others has strengthened our connection. Watching her face this challenge head on and still accomplish so much in her life is inspiring. She’s a focused college student, an enthusiastic team athlete, a devoted yogi, a vegan, a normal teenager and young lady, a sweetheart to be around, and she’s living every day to the fullest with a silent illness that won’t break her.

Everything we do in the wellness field, from nursing, to physical therapy, to promoting the health and well-being of our customers, patients, communities, and loved ones… Jessica’s story is what makes well-being real for me. Finding the ability to nurture ourselves, body and soul, and helping others to do so is, in my opinion, what leads us to genuine purpose and happiness and eases life’s inevitable pains.

Here are some resources about RND:

http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm
http://www.webmd.com/pain-management/guide/complex-regional-pain-syndrome