We Have To Change The World

How do we make the invisible visible? I talk to people with chronic illness every day who are homebound and paying a terrible price for their illness.

• A little kid being referred to truancy court because his school doesn't believe that he really has ulcerative colitis despite the fact that they have his medical records, which include a report of a colonoscopy that just can't lie.
• A woman who's had two strokes at age 30 and is having trouble navigating the Medicaid system, but we can't find anybody in her state to help her.
• A man who loses his insurance, can't afford to replace it, but will become disabled by dystonia if he stops treatment. Clearly, it's better for society if he keeps working, but society won't help him fund his medical care.

This is the world of the chronically ill. And it has to change.

I don't quite know how to change the world, but I'm committed to trying. A hunger strike was a drastic idea, I know, but that gives you an idea of how desperate I feel about getting this word out.

So what can we do? Well, I'm writing more -- both here and I'm working on something longer. I'm telling some more stories. I'm trying to explain how irrational insurance is. If you have a story that I can tell, please send it to me. My email address is patient_advocate@sbcglobal.net. I will not use your name in public, but I will try to make the horrors you live with mean something by using them to argue for change.

And then there is legislation. Every week now, Congress is voting on defunding of health reform. If you don't know how bad that would be for us chronically ill, then you don't yet fully understand health reform. Starting in 2014, if you earn up to 133% of the federal poverty level, you will get Medicaid. There will be an exchange, a marketplace where you can compare and buy insurance. And there will be subsidies for people who don't qualify for Medicaid that will make insurance more affordable. That will mean that people like the man with dystonia I mentioned above will be able to buy insurance. So contact your members of Congress and urge them to stand strong on health reform. It's not perfect, and we need to do more to control health care costs. But it's better than doing nothing.

And if you don't have a chronic illness, or if your illness is in remission, try to see the people around you who are suffering. Notice the twinge of pain in their faces. See the loneliness in their eyes. Do they need a ride to a doctor appointment? Maybe a hot meal? Maybe just someone to talk to?

I know -- I believe -- that we can change the world for the chronically ill. It's not going to be easy. But the first step is to step out of the shadows, talk about our experiences, make it okay to talk about being sick, make it real, not just for us, but for those around us. We have to do something. Please do what you can. Jennifer