I was driving Gloria Steinem to or from the nursing home where we placed her former neighbor, whose dementia had gotten the better of her, so she no longer could live on her own. I was giving one of my usual rants about the horrors of the health care system, and I said "it's too hard to be sick in America." Gloria said "that would be a good title for something." So when I decided to write a book of stories of some of Advocacy for Patients' clients, I had the title before I had anything else.
Writing It's Too Hard to Be Sick In America was equal parts easy and difficult. It was easy because the stories are so dramatic and textured that they needed little, if any, embellishment. Difficult because I was reminded of how hard things can be for the chronically ill. Indeed, telling the stories of patients who no longer are with us was heartbreaking.
I always do my best, but there are plenty of times when there's nothing I can do. I can't change the fact that the Social Security backlogs are running in the years rather than months. I can't change the fact that a teacher announced in front of a class that a child had a chronic illness and could not control his bowels. I can't change the fact that people die. But I feel all of these losses. On good days, this work is absolutely miraculous in that sometimes I actually save a life. But there are many days on which I can do no more than try to ensure that people feel like they were heard and supported, even if I have no answers.
And in this economy, I increasingly have no answers. There's no pot of money out there that people can tap into if they need a diagnostic test or surgery or something. There's no fund established by Bill Gates and Oprah Winfrey to cover the cost of health care in the United States for truly compelling cases.
By the way, if anybody wealthy is reading this, I'd be happy to administer such a fund for free, just to have a way to address this unmet need.
Yesterday, I spoke to a woman who's on Medicaid in Ohio. She and her husband are both on disability, which actually puts them over the federal poverty level, so she has Medicaid only after she spends $600 out of pocket on medical expenses (or incurs bills in that amount). But she doesn't have $600. And she gets her medication for free through the pharmaceutical company patient assistance program. Her doctor visits don't equal $600, and she hasn't needed anything major lately. But that also means that she doesn't go to the doctor as often as she should, and she doesn't take all of the medications that are prescribed for her, and she and her husband take in about $2500 per month for two people to live on, with rent taking up nearly half of that. $600 per month is one-quarter of their income. It's nuts -- but I have no answer.
Anyway, I hope you will check out It's Too Hard to Be Sick In America. It's a FREE download. You may find your story in there (with the names changed, of course). And Pearl Jam's Mike McCready wrote the foreword, so you don't want to miss that. We haven't picked our best outcomes, nor did we pick our worst cases. We simply chose those that were burned into my memory, that I will never forget, for better or worse.
Next time you run into someone who doesn't "get" chronic illness, send them to read It's Too Hard to Be Sick In America. After all, that's the best reason for us to have written it -- so everybody out there will know what it's like to live with the obstacles we face every day. Jennifer