See this beautiful woman. Like many remarkable women—including GWP readers—she is smart, competent, skillful, empowered, full of grace. But things happen, and our energies get focused in ways that we can’t always control, and they did for her. Helene Jorgensen is a labor economist formerly at the AFL-CIO. In 2003 she caught Lyme Disease–an infectious disease spread by a tick bite–while hiking in Montana after an academic conference.

Even though Lyme Disease’s symptoms include (among many others) exhaustion and difficulty focusing, Helene has written a riveting book, Sick and Tired, about dealing with her illness while navigating our irrational health care system. She’s a PhD in economics and has written a page-turner that got a starred review in Publisher’s Weekly.

Along the way, Helene’s book highlights the ways that women in particular can be bullied and jerked around (and not believed, especially with hard-to-diagnose illnesses). At one point, for example, Helene’s doctor was convinced that she had syphilis (after 10 years of very stable marriage). While we are all hassled by “not being listened to” in the health care system, there is the additional experience of having her voice discounted as a woman. Helene’s book is just out this month, and I asked her what is on people’s minds at her recent book events. Here’s what she told me:

1. We often don’t know how to do it, but sick patients must become consumers and shoppers. Helene explains, “If you are really sick and need medical care, the last thing you want to do is to call a bunch of doctors and haggle over price, as if you are a tourist souvenir shopping in Cancun. Even so, if you don’t have health coverage or your plan does not cover certain services/drugs, it pays to price shop. Pharmacies charge very different prices, and discount pharmacies such as Costco and Sam’s Club are significantly cheaper (and you don’t even have to be a member to fill prescriptions).

“Many health care providers are willing to negotiate lower prices. A 2008 study found that 66 percent of patients who negotiated with their doctor lowered their costs; and 70 percent who negotiated with hospitals got a better deal. With the rise of high-deductible health plans, patients are increasingly expected to act like consumers. As I discuss in the book [pp. 42-43], it is envisioned that high-deductible plans will lower health care costs as patients-as-consumers will shop for the highest quality of services for the lowest price, and providers compete for patients by increasing efficiency. But patients do not make good consumer decisions. After all who wants to go to a discount surgeon? (Patients use price as an indicator of quality.) Secondly, patients don’t have the medical expertise to make good decisions.”

2. Doctors can have mysterious conflicts of interest. According to Helene, “There is a huge controversy over the treatment of Lyme Disease, and two standards of care have been developed. When I was first diagnosed, I was referred to an infectious disease doctor at a leading research hospital. I assumed that I was going to get the best of care. I was terribly wrong. Patients often don’t get the best of care because of doctors’ conflicts of interest, such as consulting and investment arrangements with drug companies, health insurance companies, medical device companies, laboratories. In the book [p. 45] you can read the story of spinal surgeons who invested in a spinal device company, and the return on their investment was dependent on how many devices they implanted in patients. Here’s the catch: As a patient, it is almost impossible to find out what conflict of interests your doctor has.”

3. Health care reform is crucial. Helene explains that “private health insurance companies do not make money off sick people like myself. Republicans want to increase competition in the insurance market, but no amount of competition will make patients like me profitable. The Democrats’ plan calls for setting up insurance exchanges and banning discrimination against pre-existing conditions. But that is not going to make insurance companies want to insure sick people. Insurance companies will continue to engage in all the same tactics they use today to get out of their responsibilities to pay for medical services for sick patients. Health insurance companies regularly deny coverage for covered services, in the hope that patients are too sick to contest the denial. Since patients who are the sickest also have the highest medical bills, this is a very effective way for insurance companies to shift costs onto patients.“

4. Empowerment is key. Helene is a “sick and tired” (literally) heroine of empowerment, and while she’s interested in changing our health care system, she also has advice about how individuals can help themselves. She explains, “You have to educate yourself about your medical condition. You have to demand the best care from your doctor, and if you are not getting it, find a new doctor; and you have to fight your insurance company to pay for your care. This is very hard to do when you are sick, and having a support system is important. A woman at my talk yesterday suggested that if you don’t have family or friends who can help you, your local church (if you have one) may provide such support.”

To Helene: Thanks for telling this story. To readers: Tell me what you think of Sick and Tired.

–Virginia Rutter