From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances. 1. Young people are treated as if their health issues can’t possibly be chronic. I confess that before I ...

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I heard this on the radio recently: Mom takes her new baby to the emergency department on a weekend because she thinks her daughter might have a urinary tract infection. She's right, but regulations say the baby has to stay in the hospital for two days to ensure the infection clears. Afterwards, the mom is surprised by and concerned about a $7,000 hospital bill for the baby's care. The reporter says ...

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It was only a matter of time before the name Dr. Stanislaw Burzynski would grab the attention of the family of McKenzie Lowe, a 12-year-old from Hudson, N.H., with that most damning of diagnoses, a diffuse intrinsic pontine glioma,  an inoperable brain tumor with a median survival of less than a year. Like McKenzie, my own daughter was 12-years-old with a recurring brain tumor that had started to metastasize and ...

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I’m not a doctor.  And sure, you know your patients better than I do. But, I have been a patient and as a patient, I know how we think. As someone who works in health IT helping to create software to better connect patients and providers, I like to think I have a hypersensitive pulse on what’s going on. I know that as patients, sometimes we get frustrated trying to solve ...

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On December 31, 2011 right before midnight, I took the test of excitement and new beginnings and found out that I was pregnant. While this news was joyous in nature, it was soon marred by uncertainty and harsh reality. After my test, I followed up with a doctor’s visit a month later, as was expected, and soon learned that the cost for this bundle of joy would be around $12,000 to ...

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Look for a doctor who understands healingLook for a doctor who understands healing

An excerpt from In Sickness as in Health: Helping Couples Cope with the Complexities of Illness.

You are not a statistic Ironically, the surgeon who repaired her heart also left her heartbroken. While he and the neurologists may have considered it their obligation to present what they envisioned as ...

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Bewildered, panicked, and disheartened. I watched my mother’s eyes dart back and forth as she read the pharmacy’s prescription cash price list, knowing she could not possibly dig deep enough in her faded purse to pay for her monthly medicines. In her early fifties, she did not qualify for Medicare, nor could we afford the COBRA payments that would extend coverage for our family since my father’s recent lay off. We ...

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There's a pesky cognitive bias that creates a honking big barrier to patients and families making the most of the health advice and services available to us. It's the tendency of experts to overestimate the knowledge of others. One consequence of expertise -- or even just easy familiarity with a topic or institution or practice -- is the inability to remember not knowing what you now know. Think back to your ...

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I went to see my oncologist for my six-month checkup yesterday. All was routine, other than my blood pressure being 131 over something when it's usually in the 115 range, even when I see my family doctor. No anxiety there. When he asked what had changed in the last six months, I told him about the endoscopy I had in December, which turned out to be normal. But what prompted it ...

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When I read news articles about caring for elderly parents at a distance, I sometimes shake my head. There's a tendency to put the best spin on the experience: As long as you contact the right people, get the right information and treat the ups and downs as just part of life's challenges, you'll be fine. You can do this! I find myself wondering when the author last talked to a caregiver ...

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