Doing Harm by Maya Dusenbery

Author:Maya Dusenbery
Language: eng
Format: epub
Publisher: HarperCollinspublishers
Published: 2018-01-20T05:00:00+00:00

“I FORGOT WHAT IT FELT LIKE TO FEEL LIKE A NORMAL HUMAN BEING”

About a year ago, Alexis finally got the kind of medical care she’d searched for unsuccessfully for years. Her mom, who had long had similar symptoms, had started doing her own online research and had recently found a fibromyalgia expert who’d diagnosed her with the condition. She encouraged Alexis to give her a shot. Finally, at age twenty-nine, Alexis got a diagnosis—and a doctor who validated her pain. “She answered a million questions that I’ve had since I was eleven years old. All of a sudden I had answers, and I had someone on my side.”

Though she still has a great deal of pain and fatigue, she now has someone helping her to get them under control. And she’s improved enough that, with the support of her husband and a large extended family nearby to lean on, Alexis can be a mom to her eleven-month-old twins. Though she’d once hoped to become a nurse, for now, taking care of herself and her kids is more than enough. “Unfortunately I don’t get to be one of those supermoms who has a career and everything, because I have to take care of myself too. There’s only so much I can do in a day before I’m tapped out.” By the evening, her body usually hurts too much to do the bedtime routine with her twins. “It’s hard to face the fact that this controls my life, but it’s reached a point that I can’t deny how much it affects.”

Now that she has a doctor who takes her symptoms seriously—and who even has some ideas about how to improve them—Alexis’s biggest problem may be that she’s struggling to afford to be treated. “We have plenty of bills, and my medical care comes last, I guess.” She’s run out of covered visits to the specialist, so they’re now “few and far between” and she’s put off getting some recommended tests. “Just for my medications alone, insurance just doesn’t help enough for me to be able to afford what I need.” For now, her doctor has given her samples of a drug to help with the fatigue, which has been nothing short of life changing.

“I feel human and I can function. I can go grocery shopping and do laundry and do all these things that on a normal basis, I can’t. But the prescription is $450 a month, and I can’t afford it. Financially it’s just more than we can do. I’ve gotta pay for everything for my kids—bottles and formula and baby food and clothes. And I’m really emotional about it because I forgot what it felt like to feel like a normal human being, and now I know. Every day I beg for a cure or something to help.”

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