Living in a box: stories of chronic pain
Second in a series of occasional articles on people contending with chronic pain.
Alison Novak came to know pain at a young age. In fact, she’s hard-pressed to remember a time when she wasn’t hurting.
Doctors dismissed her complaints, finding nothing wrong, so she learned early how to carry on in spite of her achy joints, and she learned, also, that people wouldn’t believe her. Today, strangers berate her for parking in handicapped spaces, seeing no disability in the slender, put-together woman emerging from the car.
Despite appearances, Novak says she is almost always in pain — and chronic pain is an illness in its own right. In Novak’s case, her perpetual soreness results from a genetic disorder. But for many others, lifelong pain starts with a commonplace event. It was a kidney stone for Frank Holden of New Hampshire, an injured knee for Katie Olmstead of Northampton.
For Novak, Holden, and Olmstead — and millions of others — pain confines like a glass box, an invisible constraint. Whether its source is arthritis, injury, disk problems, or the aftermath of surgery, pain has no objective measurement. No blood test, no scan can reveal how bad it is. The patient stands as sole witness.
As the nation struggles to cope with a surge in opioid abuse, many pain patients — who often rely on the painkillers authorities are trying to restrict — fear their concerns are being drowned out, and chafe at the skepticism they face, whether in the pharmacy or the parking lot.
To help people outside the glass box understand, three New Englanders who have lived with pain for years agreed to share what it’s like, day after day.
ALI NOVAK DIDN’T
know what was wrong with her until just past her 30th birthday, when a geneticist put a name to it: Ehlers-Danlos syndrome, a rare genetic disorder involving a defect in collagen, the protein that strengthens connective tissues. Ehlers-Danlos was why her joints were so loose she could lie with her legs next to her head, and why a joint somewhere on her body dislocates five to 20 times a day. She can pop most of them back in place, but the aches that result cannot be stopped.
“I always feel like I have the flu, like I have the worst flu ever,” said Novak, now 37. “It’s never-ending. And it’s so difficult on your psyche, for your own morale, to be like, ‘This is the best I’m ever going to feel.’ ”
Most mornings her day starts at 5 a.m. She leaves quickly, without waking her 16-month-old son, to drive from her home in Johnston, R.I., to her job in emergency preparedness with the Cambridge Public Health Department.
Novak takes her morning dose of the opioid painkiller Dilaudid when she gets in the car, so it will kick in during the commute, which can take as long as 2½ hours when traffic is bad. She said the drug doesn’t make her drowsy or have other side effects, but it dulls the daggers in her leg.
After she leaves, her husband, Justin, a lieutenant commander in the Navy, gets their son, Jace, ready for day care.
On a recent evening, Justin comes home, carrying Jace into the house. The boy reaches for his mother, and Justin hands him to her. Ali slowly sinks into a crouch as she takes him into her arms. A rambunctious toddler, Jace weighs 30 pounds, and since her pregnancy, Ali’s back has hurt badly, the vertebrae often rotating out of place. Ali is trying to get Jace to understand that she can’t lift him and that he must be gentle with her.
“I just push through. I don’t know anything else to do,” she says. “My motto is, you have one life. And this is the life I was given.”
Ali and Justin acknowledge that her illness strains their marriage. Ali thinks Justin is annoyed by her, and doesn’t appreciate how much help she needs. Justin listens to her complaints and feels powerless.
“I can’t solve the problem,” he says. “I can’t do anything that will take her pain away.”
After Jace has dinner, Ali gives him a bath, plunking the boy in a laundry basket in the tub, so she won’t have to reach too far. Once she has put him to sleep, she will lie down, spent.
In 2010, the Institute of Medicine reported that 100 million Americans suffered from chronic pain — an estimate that sparked skepticism. Could 32 percent of the nation really be so hobbled?
But Dr. Sean Mackey, chief of the Division of Pain Medicine at Stanford University, who served on the committee that came up with the estimate, stands by it.
“That 100 million is a real number,” Mackey said, derived from a study commissioned for the report. But the number included people who are still active despite their pain. A more recent study, Mackey said, estimated that those whose lives were seriously constrained by chronic pain make up about 14 percent of the population — still a huge number.
“We inherently look at pain and say, ‘What’s the medical issue underlying that problem? If we can fix that medical issue, the pain will go away,’ ” Mackey said. “That model has been completely wrong. While pain can be a symptom, when it becomes persistent, it can affect the entire person.”
WHEN PAIN CAME TO Frank Holden, it consumed him head to toe. Even his hair hurt.
Still, Holden looks jovial and robust when he comes to the door on a recent morning, grasping the collar of yelping Sophie, his miniature schnauzer. At this moment, it’s not hard to believe that this trim, bearded 63-year-old ran eight marathons and regularly led hikes with the Appalachian Mountain Club.
But over the course of an hour-and-a-half conversation, fatigue falls on him like a light drizzle. Even as Holden continues to speak with animation, his shoulders gradually hunch forward and weariness encircles his eyes. He admits his neck has been killing him the whole time. He will need to lie down soon.
It all started in 2008 when a kidney stone lodged in a duct, necessitating a temporary stent. When the excruciating procedure removing the stone and stent was complete, Holden said, “It triggered something in my body.”
All his muscles hurt. His hands were too achy to grasp things. He became forgetful at his job as an engineer at Analog Devices in Wilmington, a job he finally had to leave last year.
A rheumatologist diagnosed him with fibromyalgia, a condition of widespread musculoskeletal pain that can be triggered by mental or physical trauma. The bad disks up and down his spine — previously identified but never before a problem — now produced neck pain and sciatica.
At a three-week pain management program last year, Holden learned to conserve his energy, to plan activities, and to “get up, get dressed, and get out” every day, no matter how bad he felt. He sees a psychologist monthly, meditates, and attends a chronic-pain support group, in addition to taking pain medication.
“You try not to focus on your pain all the time,” he says. “It’s always there, but you’re constantly trying to redirect your attention.” Each day, he takes Sophie for a quarter-mile walk and tries to get a little work done on a project, such as painting a window. But he needs to lie down in the middle of the day, and ends his day around 7 p.m. Those noontime runs with his friends are history.
Holden and his wife, Ilene Hallisey, once had plans to travel, hike, and explore the world when he retired. Now, they’re planning to sell their spacious Colonial in southern New Hampshire. Hallisey, 49, can’t keep up with the yardwork on her own.
But Holden describes his life’s new course with a smile. “I don’t allow negative thoughts to come into my head,” he says. Asked what he enjoys these days, he says, “I just enjoy getting through the day.”
KATIE OLMSTEAD HAS learned to conduct what she calls a “cost-benefit analysis” of every potential activity: Is it worth the pain and exhaustion that will result?
Eighteen years ago, Olmstead tore a ligament in her knee during a dance class. She underwent surgery to repair it — but the pain persisted after her knee had healed. Her leg was bruised and hot to the touch, the skin so sensitive that to this day she can’t wear tights.
Eventually, she was diagnosed with complex regional pain syndrome — a dysfunction of the nervous system in which pain signals continue long after the pain’s original source has been repaired. In recent years, Olmstead, now 62, has developed bursitis in a hip, and disk problems in her neck that produce a stabbing pain in her shoulder blade.
One of her doctors likened chronic pain to living in a box: The patient can press against its walls, but breaches those walls at her peril. Olmstead has forsaken many activities outside her box: visiting her two adult daughters, who live hours away; attending church services, because the wooden pews hurt; holding down a job; taking weekend trips.
And she manages her time. Her daily walks go no longer than an hour. She does not skip her afternoon nap with her cat, Gabby. Her meals and snacks occur on schedule because she must take her medication (Vicodin plus a muscle relaxant) with food every three or four hours.
Dr. Henry Simkin, Olmstead’s primary care doctor, said chronic pain is one of the top 10 issues he deals with. “For some people, it’s almost like a grief reaction: ‘What do you mean, I’m not going to get completely better?’ ” Simkin said. “Pain becomes the defining part of their life.”
But Olmstead, he said, is unique in having found something “so positive it seems to just chase away all the pain.”
Her therapy? Contra dancing, a form of folk dancing. Three nights a week, she heads to a local dance hall, accepting that she’ll be tired and sore the next day.
“I’m out for as much joy as I can get within the framework of my life,” she said.
On a recent night, Olmstead arrives early at the Masonic Lodge in Amherst, to set up the snack table. Then, she dons her dancing shoes. The band strikes up.
And Katie Olmstead, the woman in pain, links arms with another dancer and swirls her blue tie-dyed dress, her feet light and fast, a touch of defiance in her blissful smile.