I know you all experience this, too.  I get calls from people whose co-workers complain behind their backs that it's unfair that they get extra bathroom breaks, as if they wished to be sick and need a bathroom, as if spending an hour in the bathroom was fun.  I get calls from people whose doctors give up on them, even fire them, for having the ongoing needs that go with chronic illness, for just being too complicated.  I get calls from people whose family and friends have abandoned them because they think they aren't really as sick as they say they are.  People's attitudes towards invisible illness get communicated to us in many ways.  Just last week, I got a call from a mom whose daughter has Crohn's.  Her teacher wouldn't let her leave class to use the bathroom, not believing the immediate need, and so she had an accident.  In front of everybody.  And media all too often use insensitive language when talking about people with mental illness and disabilities.  The slights are all around us.  Legal action can address some of this, but a lot of this is about attitudes, not law.  I find it a whole lot harder when confronted by a biased attitude then when confronted by a violation of law. 

I was on FOX News on July 4th debating a conservative who believes that people with pre-existing conditions should be in high risk pools rather than compelling insurance companies to cover us, even though the premiums for high risk pools are as high as $2200/month.  Why, he says, should healthy people have to subsidize our health care by spreading our costs over the whole population?  It doesn't matter that most people can't afford high risk pools.  It doesn't matter that half of all Americans have at least one pre-existing condition.  This attitude is not about reality; like any other form of bias, it is borne of ignorance.  Rational response simply doesn't work here.  Indeed, even if the health reform law is fully implemented and we do get coverage of our pre-existing conditions, the attitudes to which we are subjected will still be in the hearts and minds of many of our fellow Americans.  We can influence policy, but can we change hearts and minds?     

Having a chronic illness imposes many burdens on us.  We are sick.  We are in pain.  We are exhausted.  Many of our dreams fall by the wayside because we spend every "extra" penny we have on something to do with our health rather than having fun.  With invisible disabilities, we face skepticism and a lack of compassion not only from strangers, but from family and friends.  And on top of all of that, we face the viewpoints of those who feel that there is and ought to be no shared sacrifice, that our fellow humans owe us nothing, that we are "unfortunate," when what we need is not pity, but a hand up or even just a level playing field.

Supposedly, I am a success story for people with chronic illness.  I talk about coping with chronic illness in a way that makes me out to be a role model.  I've been to the White House.  I am sought after for my expertise by both federal and state officials.  I work no matter how sick I am.  I support myself, have a nice home, run a small business.  I'm smart. I make a difference for people.

But in a phrase -- "maybe you shouldn't travel," "unfortunate people" -- it's all taken away.  How I'm seen is not based on what I've done to overcome my illness; it's based only on my illness itself.  It makes me feel small.  Isolated.  Alone.   

"Of all the forms of inequality, injustice in health care is the most shocking and inhumane."   

Rev. Martin Luther King, Jr.

If you don't think you're in the middle of a civil rights struggle, remember that you, like me, are an "unfortunate person" in the eyes of many of our fellow Americans.  I don't know about you, but for me, these little reminders are, in the end, energizing.  Once again, I am called to reject victimhood and fight.     

Sort of like Olympic athletes who face and exceed their physical limitations every day.  These are people who do everything they can to get their bodies into maximum condition, who challenge their own limits as well as others', who push themselves as hard as they possibly can.  Medal or not, they have accomplished something truly great by just getting there.  They achieve their personal best, whatever that may be.

Sort of like us, right?  We do everything we can to face the pain, to get out of bed, to do as much as we can.  For some of us, that means dragging ourselves to work every day, trying to achieve success in a world that often misunderstands us.  For others of us, it means asserting our right to a "free and appropriate public education."  For too many of us, it means searching for a little understanding, which too often is elusive.  When we accomplish even the smallest of these tasks, we are like Olympians, achieving our personal best.  We are heroes.

I have one client with diabetes who passed out at his desk at work.  Instead of calling 911, his supervisor took a photograph and wrote him up for sleeping on the job. He still went back to work the next day.  You think he's not a hero?

For me, the Olympics are a reminder of what we can do when we put our mind to it.  We can overcome our physical limitations and achieve great things.  I may not have the physical stamina to enter even the Special Olympics, but I can get myself to the office every day, work hard to get people the care they need, to stay in school, to stay in their jobs, and when they can't work, to help them apply for disability with their dignity intact.

It's a hard battle, every day.  We face pain and fatigue that is so overwhelming -- nobody who has not walked in our shoes can understand.  For me, there's also the danger of pushing myself so hard that, when someone hits below the belt, sometimes I respond out of anger, unable to muster the professionalism I should.  It's a huge challenge, to remain calm in the face of the worst insults, to make these into "teachable moments" rather than melting down or lashing out.  So part of the battle is also forgiving yourself when the challenges are just too great and you need to simply step back, step away, and take some time to heal.     

I don't know if we can change the hearts and minds of people who don't "get it."  What we can do is reject their version of reality and fight to maintain our own.  We can give ourselves a break -- whether it be a day off or some forgiveness or taking pride in the small things we do for others.  In our version of reality, we can celebrate whatever we accomplish every day as the victory it is.   

I am not "unfortunate."  Every day I get out of bed and go to the office and spend 12-15 hours trying to make a contribution, I am a hero.  And every day, as you do everything you can to make life better, SO ARE YOU.  

When you live with chronic illness -- live with it rather than retreating into the shadows waiting to die -- you are a hero.  You are brave and strong.  Don't ever let anybody take that away from you. No matter what.    

Jennifer    

Last month, Google announced the winners of its annual science fair: a competition for teenagers from around the globe, with innovative and creative ideas that have potential real-world applications. This is not your average homemade volcano or potato battery science fair, and this year's entrants far exceeded Google's expectations. The top two awards went to American students, Brittany Wenger (age 17) and Jonah Kohn (age 14). Interestingly, both students tackled problems associated with chronic conditions.

Jonah Kohn, the second place winner, submitted a project focused on increasing the enjoyment of music for people with impaired hearing. He developed a device, using tactile sound, which filters sound into frequency ranges to be felt by different parts of the body. He got the idea after he noticed that biting on his guitar head while playing allowed him to better hear the music. The initial tests of his device showed improvement in the listening experience of young people with impaired hearing by more than 95%. Jonah is already imagining how his device could be applied beyond music and help us better understand how we perceive language.

Brittany, the grand-prize winner, created a computer program that diagnoses malignant breast cancer tissue with 99% accuracy. She developed her own neural network software, which uses a large database of breast tissue samples and "learns" to detect patterns in order to answer the basic question: "Is this tissue malignant or benign?" The program is designed to work with the least invasive diagnostic biopsy, fine needle aspirate (FNA), which formerly was too inaccurate to be relied upon solely, requiring further painful diagnostic tests. Brittany's program increases the accuracy of FNA biopsies to 99%. She believes the program is hospital ready, will only increase in accuracy as doctors include more data sets, and is providing it for free online. It is easy to see why this bright, young scientist took the top prize and left the judges stunned.

I am amazed at the genius and thoughtfulness of these two young students. One has improved the experience of music for the hearing impaired and the other has provided a ground-breaking program to accurately and less painfully diagnose breast cancer, all before they were old enough to vote. Their projects have certainly upped the ante for next year's competition and should inspire and challenge America's youth to get involved in the fight against chronic illness.

To read more about these amazing students and their projects, go to: http://www.google.com/intl/en/events/sciencefair/index.html 

Brittany