Outing The Diagnosis

“What is told into the ear of a man, is often heard a hundred miles away” – Chinese proverb.

A couple of months back, Caitlin recieved one of those forwarded text messages from a friend in Kansas… it was one of those teenage jokes.  The friend, Hannah, happened to be somebody Caitlin met at a JA conference – and she also has JA.  As teens do, Caitlin forwarded the message on to a large group of local friends.  One of her church youth group friends, Anna, got curious about this mysterious friend Hannah and texted her directly.  “I’m Caitlin’s friend too!  How do you know Caitlin?”  And just like that, with Hannah’s response about juvenile arthritis, Caitlin was outed.

You might be surprised that even after being such an outspoken advocate for juvenile arthritis, after appearing in videos and being the national walk honoree, after speaking in front of thousands of people – that Caitlin still keeps her diagnosis hidden quite a bit.  The church youth group is a good example.  The kids all go to different schools, so they may not have seen her limping, missing PE, heading to the nurses office for pain meds.  It was a prime opportunity for Caitlin to meet a new group of people and put forward any persona she wished.  Understandably, she chose not to tell anybody about her condition, a privilege she is afforded because of her current remission.  Only the group leader knew, because she knows me.  But to all the kids, Caitlin was just another eighth grader who likes Hunger Games, One Direction, and loved the field trips to do random acts of kindness.

At first, Caitlin was a bit bummed out that her cover was blown.  But Anna is a good friend, and she was super supportive about the whole thing. The news traveled no further than Anna.  And of course, since Caitlin is doing really well right now, Anna hasn’t been called upon to fully understand the disease in it’s ugly reality – when it means not being able to walk, having fevers, daily shots, missing out on normal stuff…. right now, it’s just a phrase- juvenile arthritis.

This however  – begs the larger question….. With all of my blogging, and chatting, and advocating….How am I harming my daughter by outing her diagnosis?  Am I robbing her of the opportunity to keep her diagnosis a seceret?

One of my most respected JA mom friends posted a story last year about her daughter Marian.  I feel like I know Marian, because I have followed her story through high school, college and now graduate school.  Marian has the same type of arthritis as Caitlin – and has never had a remission.  It’s been a long, sloggy, ongoing fight…. But it didn’t stop her from graduating in the top of her class and entering a highly competetive engineering program.  Last year, it was discovered that tens of thousands of records from the medical center where Marian had been treated during her college years had been erroneously posted on the internet… for almost a year.  It was a huge scandal, and of course, my mind went first to the obvious things… Names, addresses and social security numbers were there for the taking – giving sleazeballs easy access for stealing identities and ruining credit.  But that wasn’t what worried Marian. It was the fact that the records contained diagnosis codes, medications, test results.  What she feared was that someday, in the very near future, a potential employer, having interviewed her, reviewed her impressive resume and found her to be an exciting possible hire- would do a last check through the internet – Googling her name and finding those records.  And all of a sudden, another candidate, one without a chronic, debilitating illness, would slip silently into the top contender’s position.  Illegal? Yes.  Likely?  Yes – yes – sadly, yes.

When my daughter was five, and we were in the dark throes of battling this disease – her future hiring prospects were pretty far down my list of worries.  It’s not that I never thought about it – I did.  I’m pretty sure that I found a way to worry about just about every possible future scenario through her future life.  But I mostly pushed those fears aside for the sake of the immediate needs, for the now…. making her life tolerable NOW.  Finding the right medication NOW.  Helping her to walk and adapt NOW.  I made videos and built walk teams, and uploaded her story to anybody I could get to read it.  Awareness was the magic ingredient to her better future.  Telling her story was the way to make people understand – so they would be tolerant and kind and educated and perhaps even fair. Awareness was the way we would raise money, fund research, find a cure.

But here we are, almost eleven years later, and she is entering high school.  In four years, she’ll be heading off to college – maybe trying to gain admittance to an exclusive, competetive program.  And maybe the person reviewing will Google her name or her image. It’s not the first hit – or even in the top five – but it’s there.  Her history with arthritis, her involvement with the foundation, her surgery.  If somebody takes the time to look past all of the hits about the character on Degrassi High School – they will see my daughter.  She’s been outed for years now – thanks to me.  Now, she does it with her own will – she alone agrees to any videos, public speaking – whatever.  But even if she said no from here on out – it’s still all there to find.

I wish we lived in a world where my daughter would be judged by the content of her character, and the strength of her determination and not the diagnosis on her medical chart.  But we don’t.  In some ways, that’s the war I’ve been waging all this time… to create a world where this disease does not stand in her way – either because it is cured, controlled, or at least because there is a greater understanding and awareness.

I feel the clock ticking the older she gets.  Because I feel this test coming – the test of whether outing my daughter’s diagnosis actually did enough good to make it all worth it for her.  As with most things being her mother, I hope and pray that I’ve done more good than harm.  Will it be enough, soon enough?