‘I Am Totally Burned Out’: Patients Watch Health
July 27, 2017, 3:30pm

Ever since the November election, when the fate of her family’s health coverage was suddenly up for grabs, Meghan Borland has been consumed by each twitch and turn of the political debate. She has gone to protests, met with her congressman, lost sleep, shed tears.

“My emotions are like a Ping-Pong ball being bounced back and forth between the players, ” said Mrs. Borland, who, with her husband, owns a karate school in Pleasant Valley, N.Y., and whose younger daughter, Amelia, 2, is receiving chemotherapy for leukemia.

“For months it’s been: ‘Here’s a bill, we’ll vote. No, we won’t. Now it will change. Maybe not. Will that one person vote or not?’ Except that for us, this is not a game.”

The months-old war in Congress over repealing and replacing the Affordable Care Act has had more standoffs, stand-downs and bare-knuckled battles than any other legislative fight in recent memory. But for people whose health insurance is at risk, it has brought the anguish of protracted uncertainty.

Most Americans who are insured — including many who have plans through their employers or Medicare, for example — would not be affected by the changes under consideration. But millions of people who get coverage through the marketplaces created by the Affordable Care Act or through the expansion of Medicaid under the law could lose it. In interviews, some said they do not know from one day to the next whether they will be able to continue screenings and treatment. They are postponing or accelerating major medical decisions, weighing whether to move to more insurance-friendly states, or to close modest businesses and search for employment with health benefits. Millions of Americans feel held hostage to Washington’s wrangling and, consequently, to their own inability to control critical matters in their own lives.

“I’m so done,” moaned Cathy McPherson, 58, a retired court clerk in Sonora, Calif., with hypertension, who has been covered by plans under the health care act from the outset. “It’s what I think about all the time and I am totally burned out. They go over and over it. Can you stop? Just stop it for a little bit? Go on vacation! Relax! Because I’d like a vacation from it, too!”

On Thursday, as a vote loomed on a last-ditch repeal measure, many suspected the uncertainty would not end. If the measure squeaks through, it will move to the next step of the legislative process — a House-Senate conference committee that will try to negotiate a broader health bill that can pass both chambers. If it fails, many think that their relief will be only temporary, and chances are that Republicans will try again.

For the last few weeks, as the Senate Republican health effort was twice pronounced dead only to be revived a day or two later, Nancy Molitor, a psychologist in Wilmette, Ill., has heard escalating anxiety about health care from all of her patients. Many want to spend entire sessions discussing it: how to handle the stress and the feelings of fear, powerlessness, rage and frustrated paralysis.

“They know they should turn off the TV and their news feeds, but they can’t,” said Dr. Molitor, an assistant clinical professor of psychiatry and behavioral health at the medical school at Northwestern University.

On Wednesday, the day after the Senate narrowly voted to begin floor debate on health legislation, she saw eight patients who each brought up the issue, regardless of whether they would be directly affected by the repeal efforts. She noted that her patients worried about caring for parents as well as for children with severe mental illness. “But the situation is so fluid and volatile that it is a recipe for stress.”

And yet conventional therapeutic wisdom for managing stress does not translate well to health care-related anxiety, she said. In more typical periods of life agitation — death, divorce, job loss — a therapist tries to get patients to identify what is in their control, what is not, and how then to get information and make a plan.

“But with health care, even the therapists don’t know the answer. We haven’t experienced this before,” Dr. Molitor said. “It’s hard to be a therapist in this environment because we’re worried about the same things, too. We have to make sure our own anxiety isn’t infecting the session.”

In response to a callout to New York Times readers on Wednesday, many people talked about stockpiling medications, postponing surgeries so as not to set up a pre-existing condition, or racing to see specialists for fear of losing their coverage.

Angela Wilson Gyetvan has decided to move ahead with gallbladder surgery, even though she had so far been managing her gallstones — a side effect of medication she has been taking since she finished chemotherapy several years ago — with diet. But Ms. Wilson Gyetvan, a Los Angeles-based consultant for digital companies who has coverage through the Affordable Care Act, does not have the financial wherewithal to take a wait-and-see approach.

She has been assiduously monitoring the Washington debate for months, incapable of putting herself on a social media diet. “During the good moments, it was such a relief — ‘It’s dead!’” she said. “Several of us were ready to go for a drink and celebrate. But we were scared. And lo and behold, we were right.”

Dr. Leigh H. Simmons, a primary care physician who teaches at Harvard Medical School, has been trying to adapt her approach to patients as each new upheaval in Washington brings fresh concerns to her office. The day before the House bill passed in May, she saw more patients in her practice than ever. “Some were for urgent reasons, others less so,” she said. “But they knew they had health care this year and they wanted to take care of things.

“I say, ‘For the time being, since you have coverage, why don’t we get the mammogram or the colonoscopy done?’ I don’t mean it to be frightening, but as an incentive.”

“I’m so done,” moaned Cathy McPherson, 58, a retired court clerk in Sonora, Calif., with hypertension, who has been covered by plans under the health care act from the outset. “It’s what I think about all the time and I am totally burned out. They go over and over it. Can you stop? Just stop it for a little bit? Go on vacation! Relax! Because I’d like a vacation from it, too!”

On Thursday, as a vote loomed on a last-ditch repeal measure, many suspected the uncertainty would not end. If the measure squeaks through, it will move to the next step of the legislative process — a House-Senate conference committee that will try to negotiate a broader health bill that can pass both chambers. If it fails, many think that their relief will be only temporary, and chances are that Republicans will try again.

For the last few weeks, as the Senate Republican health effort was twice pronounced dead only to be revived a day or two later, Nancy Molitor, a psychologist in Wilmette, Ill., has heard escalating anxiety about health care from all of her patients. Many want to spend entire sessions discussing it: how to handle the stress and the feelings of fear, powerlessness, rage and frustrated paralysis.

“They know they should turn off the TV and their news feeds, but they can’t,” said Dr. Molitor, an assistant clinical professor of psychiatry and behavioral health at the medical school at Northwestern University.

On Wednesday, the day after the Senate narrowly voted to begin floor debate on health legislation, she saw eight patients who each brought up the issue, regardless of whether they would be directly affected by the repeal efforts. She noted that her patients worried about caring for parents as well as for children with severe mental illness. “But the situation is so fluid and volatile that it is a recipe for stress.”

And yet conventional therapeutic wisdom for managing stress does not translate well to health care-related anxiety, she said. In more typical periods of life agitation — death, divorce, job loss — a therapist tries to get patients to identify what is in their control, what is not, and how then to get information and make a plan.

“But with health care, even the therapists don’t know the answer. We haven’t experienced this before,” Dr. Molitor said. “It’s hard to be a therapist in this environment because we’re worried about the same things, too. We have to make sure our own anxiety isn’t infecting the session.”

In response to a callout to New York Times readers on Wednesday, many people talked about stockpiling medications, postponing surgeries so as not to set up a pre-existing condition, or racing to see specialists for fear of losing their coverage.

Angela Wilson Gyetvan has decided to move ahead with gallbladder surgery, even though she had so far been managing her gallstones — a side effect of medication she has been taking since she finished chemotherapy several years ago — with diet. But Ms. Wilson Gyetvan, a Los Angeles-based consultant for digital companies who has coverage through the Affordable Care Act, does not have the financial wherewithal to take a wait-and-see approach.

She has been assiduously monitoring the Washington debate for months, incapable of putting herself on a social media diet. “During the good moments, it was such a relief — ‘It’s dead!’” she said. “Several of us were ready to go for a drink and celebrate. But we were scared. And lo and behold, we were right.”

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