The Yin Yang of Arthritis Awareness

You’ve seen this before, right?  Heard the phrase? It’s a common perception that Yin Yang refer to good and evil.  But the dark and the light are necessary opposites – and they work together in balance to create interconnection and harmony in the world.  One would not exist without the other.  Yin is the black portion with the white dot,  and Yang is the white portion with the black dot.

I often hear discussions about the best way to present arthritis to an uneducated world.  This seems to be quite a hot topic lately. It seems that all of us, all of us who suffer in one form or another, whether directly or via somebody we love – we all have a very passionate and vested interest in getting the world’s attention.  There clearly are not enough people standing up for our cause.  Not enough celebrity endorsements.  Not enough news stories.  Not enough corporate donor dollars.  We are seemingly in the shadows despite being the biggest player in number of people affected.  We’re just not sexy enough or understood enough to draw the urgency and attention we need.  So we need to get the word out.  But how best to do it?  On the one hand, arthritis is often misunderstood and mischaracterized as a gnarling “old” disease – which is not something that will really rally people behind the cause.  On the other hand, by putting forward too hopeful and shiny a face, don’t we belie the truth about the ugliness of the disease?  Which is the face of arthritis to show? The Yin or the Yang?

Disease is not pretty no matter what color the ribbon, but there are plenty of diseases that have no problem drawing celebrity support.  And let’s face it, that’s one of the main ways of creating massive awareness.  Where would the cause of Colon Cancer be without Katie Couric?  How much research funding for spinal cord injury was generated by Christopher Reeves?  How much closer are the keys to unlocking Parkinson’s Disease because of Michael J. Fox?  And the number of celebrities who support Cancer Research are far too numerous to mention….

There are celebrities that have come forward to talk about their arthritis.  However, the numbers are pretty slim compared to the numbers of celebrities who must be actually personally dealing with the disease.  There’s something about “arthritis” that keeps them quiet, that prevents them from speaking out or supporting the cause.  Perhaps it’s that arthritis is the leading cause of disability and they don’t want to be labeled as somebody who might not be able to finish a film, or show up regularly on set or for whatever their gig is.  Perhaps it’s that arthritis is mistakenly associated with aging…. Which is not something that any celebrity wants to be associated with.  But, frankly – there’s just something about  the perception of arthritis that is unappealing – enough to cause even celebrities who are affected to shy away from our cause.  A famous 90210 cast member’s daughter was diagnosed with juvenile arthritis (and thankfully, she’s doing well…).  At the time, there were a few news stories about her shock at the diagnosis, the fear she and her husband felt, the many tests etc.  And yet, after that, there was never any other word about it.  I was able to find, however, several stories about how her kids support Cookies For Cancer.  Don’t get me wrong – it’s a great cause…. But really?  Her kid is diagnosed with arthritis and she doesn’t want to get behind the cause?  And yet… I saw her on The Doctors a month or two back… talking about how migraines are misunderstood.  Wow.

In that context – arthritis does need a makeover.  We do need to find a way to highlight the fact that arthritis does not discriminate by age, ethnicity, religion, nationality, gender or socio-economic standing.  But we need to do it in a way that is appealing…. Hmmm….. Hope is appealing.  People preventing arthritis or controlling it with an active lifestyle sounds pretty good.  Somebody who would otherwise have given up a career as an actress, or a tennis player, a golfer or a CEO – but was able to follow their chosen life path because of medication X,Y or Z… well, that’s pretty positive. Maybe appealing.  Faces that people recognize and trust are appealing.  Happy, shiny, smiling faces of people living well with their arthritis – very appealing.

So I guess this would be the Yang.

However. One of the most powerful things I have ever seen personally for arthritis awareness is a video that a father shot of his young daughter trying to walk during a very bad flare.  It was excruciating to watch. She waddled back and forth, her knees and ankles swollen, crying and begging to sit down or be picked up.  I wanted to turn away like I do with the commercials of abandoned puppies and kittens in cages…. But I didn’t.  I watched and cried like just about everybody else in the room.  I cried because I had already lived that truth.  Many people cried because they were learning for the first time.

But the thing is… it’s the truth.  It’s as much the truth as the fact that some people are living well and their disease is controlled.

And having been there… and fearing that I will be back again someday – I can tell you that one of the most frustrating things to watch when you are despairing in the throes of battling arthritis is happy, shiny faces.  Arthritis is not that simple.  Control is not always that easy.  And though the hope can often help you move forward, sometimes  it makes you want to scream the truth from the mountain tops that people are suffering.  It makes you want to force people to watch videos of kids that can’t walk, and moms who can’t pick up their kids, and look at pictures of beautiful, talented, wonderful hands that can’t do what they want to do anymore because of this disease.  It makes you blurt out the names of people who have died because of the disease.  You feel like it’s only if people truly understand the disease, understand the dangers, see the damages,  recognize the toll – then and only then will they throw some energy and attention behind the cause.  This is the dark truth…. So I guess that would be the Yin.

I’m not saying that we should not show the good stories.  We need Hope.  But we need the hope because of the ongoing truth about the dark side of this disease.  That needs to be heard as well.

As far as I am concerned, we need the whole Yin Yang.  And I grateful  to those brave enough to lend their stories on either road.  To me, it’s the end result that matters… and both are ways of leading us closer to a cure.

What do you think?

This entry was posted in Awareness / Advocacy, Dealing with the public, Education, Overcoming obstacles and tagged . Bookmark the permalink.

4 Responses to The Yin Yang of Arthritis Awareness

  1. Brenda Anderson says:

    Well spoken! I live the yin and yang daily as I watch my own systemic daughter struggle yet thrive all in the same day. I carry her down the stairs in the morning (and at age 8 that is not an easy task) because her hips are in too much pain to support herself. I watch her cry as I help her get dressed because she is too stiff and sore to do it herself. I help feed her her cereal because her arthritic fingers can’t come together enough to grasp a spoon. Then hours later, after all the powerful drugs start kicking in, this same little girl will be able to run and laugh and play. I try to tell people how sick my little girl really is and they look at me like I am nuts. And my daughter, being the trooper that she is, will smile and tell everyone that she is doing great. It is very difficult to get gain support and awareness when nobody sees the dark side. Thank you, Colleen, for sharing your daughter’s story, the yin and yang, with the rest of the world.

    Brenda Anderson
    Mother of Victoria
    Systemic JIa diagnosed at age 6

    • jiamom says:

      Thank you Brenda! That is so true.. with juvenile arthtritis you can have yin and yang within the same hour! And often, we shield others from seeing our kids at their darkest moments, whether it’s to protect their privacy, protect somebody else’s sense of normalcy, or simply because we are too busy simply carrying our kids to the bathroom. When I saw that video of the little girl trying to walk, it was literally like a punch in the gut. I had never recorded any of those moments – we work so hard to get past them. But they are the truth as much as the fact that these kids can manage to often suck it up and put on a smile for school, or social functions…
      I hope Victoria is doing well. It sounds like she has much in common with my daughter. And thank you so much for commenting! It’s always great to know that we are not alone 🙂

  2. I always have loved reading your blogs, You always speak so much truth, and of course this is a matter that we think about often. One thing that I know is that, thanks to the AF, Facebook, the power of bloggers uniting, we will find a way to bring change. People don’t understand that the sinus infection that lasts for months and won’t go away in my immune suppressed daughter could kill her. That we have a delicate balance of keeping her immune system up enough to not let her get gravely ill while injecting and infusing 4 immune suppressors into her. And like Victoria’s mom says, even on a bad day when she can’t walk or she’s struggling badly, the automatic answer is “I’m fine”. I wish that people could see how brave our children really are.

  3. Pingback: HAWMC DAY2: Introductions | justanotherspoonie

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