What Story Does Your Face Tell? – by Ashley Boynes-Shuck

Arthritis Month has come to an end, but just because June is here, doesn’t mean we shouldn’t keep on spreading arthritis awareness.

During the month of May,  I saw and heard a lot from the Arthritis Foundation’s “Faces of Arthritis” campaign – a wonderful, and sometimes eye-opening, initiative.

I thought long and hard about the Face of Arthritis, and realize the best way I can contribute to this awareness-increasing campaign is to share my story in sum: the story of who *I* am — because I am one of millions of Faces of Arthritis.

I am someone who, around 4th grade, began having unexplained aches and pains that would not get better.

I am a softball pitcher whose shoulder and other joints wouldn’t bounce back after a game — someone who couldn’t be helped by some ice, or some Tylenol, or a hot bath.

I am a girl who was told by the pediatrician that my problem was “growing pains,” and who, since then, and many times throughout my 29 years, has been treated like a hypochondriac.

I am a middle schooler who was made fun of because I walked with a limp. I am a high schooler whose peers didn’t understand my need to come in late many mornings, because walking was painful, getting ready was difficult, and the fatigue that comes with a chronic, systemic autoimmune condition like rheumatoid arthritis, can be almost unbearable.

I am the college student who awoke with half a paralyzed face one day. I am the college student who developed Bell’s Palsy that lasted for months, and who had further complications, who was misdiagnosed with fibromyalgia, who had to take a medical withdrawal, and who struggled to balance school with a relationship, work, and a social life.

I am the grad student who tried to remain committed to a job as a Catholic school secretary. I am the girl who saw various doctors before an endocrinologist would diagnose me with the gastrointestinal autoimmune condition, Celiac disease. I am the girl whose former boss told me that my knee surgery was “inconvenient timing” and whose colleague suggested I switch religions because of my inability to ingest the Communion, made of wheat.

I am the girl who has had various lumps, bumps, and cysts tested and removed, who has been told she’s at-risk for various conditions, who has been poked and prodded, and has had up to 32 vials of blood taken in a 24-hour period. I’ve had pre-cancerous this or a “rare form” of that; I’ve had diagnoses made and then revised and then revoked or remissed.

I am the twenty-something who lived with debilitating migraines, tinnitus, and worsening neurological issues. I was the young woman who got loaded up with anti-depressants and anti-seizure medications and meds to combat side effects of other meds and whose primary care physician once told her, “it’s all in your head.”

I am the girl who, at age 27, found out that it WAS all in my head – literally. In addition to polyarticular juvenile rheumatoid arthritis and celiac disease, I was diagnosed with Arnold-Chiari malformation…by a neuro-opthamlogist who, unlike the many doctors who had blown me off and the countless medical professionals who had missed it, actually cared and took some time to think outside the box.

I am the girl who underwent brain surgery 5 months before her wedding.

I am the girl who was on biologic infusions, and a multitude of other meds for RA for 20+ years only to develop major, dangerous side effects in 2012. I am the girl who spent the beginning of 2012 being regularly admitted to the hospital for sinus tachycardia (a benign heart condition) and unknown endocrine issues…the girl on whom who doctors have done countless biopsies and blood tests and scans.

I am the girl who, for years, was unable to keep up any resemblance of an exercise routine, who had difficulties at work, who, at one point, literally thought I could die. I have lost friends, lost hope, and lost self-confidence.

However….

The Face of Arthritis has many sides to it. Every fine line, crinkle, or flaw makes up the beautiful complexion that is that face…. but my face prefers to be looked at as a whole. You wouldn’t focus on a person’s wrinkles, would you? Their acne? No. You would look at that face and look past its flaws, seeing the true beauty of someone’s being.

My face is one that has gotten a college degree, and then some…

…it has been successfully self-employed and has now went back to working full-time at a job that I love.

…it has made exercise a part of my weekly routine – even joining a sometimes-intense Imagekettlebell class.

…it is a face who has been able to do 15-mile bike rides when a couple years ago I could barely do a few miles.

…it has went off all RA medications and has had success doing things more naturally.

…it has become a holistic health coach.

…it has married the love of my life.

…it has appeared on local and national television as well as in many publications for arthritis advocacy and other endeavors.

…it has been to the Oprah Winfrey show and Good Morning America,  won various awards, met countless celebrities, raised thousands of dollars for charity, and gone white water rafting.

…it has a book that’s in the process of being published.

…it is a face that believes that all my dreams can come true despite the health hurdles I’ve faced.

Sure, I still have some unknowns in relation to my complex case of celiac disease and food allergies. I still get migraines now and then, am prone to getting colds and strep throat, and I could use a knee replacement. I tend toward having a lot of muscle knots and spasms. I may not ever be able to run a marathon, or classify myself as 100% healthy.

But this face is one that isn’t defined by having arthritis or any of these other diseases or ailments.

This is a face that will “keep on keeping on,” no matter what life throws at me. With an amazing translational rheumatologist, an integrative and mostly-holistic medical approach, positive lifestyle changes and a good, balanced, happy mindset, a loving and supportive husband, family, and group of friends, a faith in God, a compassion to help others and an attitude of gratitude, I have transformed what could have been a sad story into a happy one.

People have often said to me, “you poor thing,” “I feel so bad for you,” “I’m so sorry, I never would have guessed you have all of these issues.” To all of these people, I want to say this:

Thank you. I appreciate your kindness, but I am okay. Do not feel bad for me or have pity on me, as I am more than blessed to live a fabulous life in spite of my conditions. I am grateful for all of the good things that I have going on, and that is what I choose to focus on instead of the negative hurdles that my health has, at times, thrown at me. I love my life, and because of all of the love surrounding me as well, I can handle the health stuff.

See, I may not look sick, though I sometimes am…but more importantly, I’m on my way to getting better, and I don’t let these negative things define me, or who I am, or how I can and will live my life. My face, like my story, is my own — and I’m always going to strive to be the best me I can be.

Every Face of Arthritis is different, with different stories,  attitudes,  results, and treatments — different struggles and triumphs and complications — but we are all in this together. There is no better or worse way to do things, because we are a whole.

So, in summary, I’ll say this: there is no one Face of Arthritis. My story is as unique as a snowflake or a fingerprint, and yours is, too. But together, we are the Face of Arthritis, and we should aim to make that face as beautiful and lovely as we can.

Be Well,

Ashley Boynes-Shuck

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3 thoughts on “What Story Does Your Face Tell? – by Ashley Boynes-Shuck

  1. Ashley- this post made me cry!!! I have followed your blog and your FB posts for several years now. I remember your chiari diagnosis. I remember your frequent hospitalizations. I remember how sick you were. I see how some people don’t understand the road that you are on, how some have decided you are against medicine (I get it). I think that you are amazing!!! I love this post, I love your positivity, and I love that you are sharing your success with other people. I wish that you could say that you are cured, but you have certainly come a long, long way. Thank you so much for sharing this journey. I am trying to get a very difficult eater to take your path. How do you change the diet of a stubborn tween that hates almost everything? It is a process, but I hope in time she will be able to say that she feels as changed as you. Of course, she hasn’t been diagnosed with Celiac (and I think she was born with arthritis) so perhaps dietary changes won’t help, but if they do….. I will be thrilled.

    I found another person who recently decided to go on a similar path. She writes “Julie’s Joint: The Bionic Mom”. I pointed her in your direction.

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