Learning self-compassion in the face of disabling pain.
“I’ve always had some kind of lower back pain,” says Kate Schultz, 35. She was diagnosed with Ehlers-Danlos syndrome (EDS) at the age of seven, and the condition causes both chronic and acute joint pain and other complications. Kate can’t really remember a time when she didn’t have chronic pain—but the past few years have been the worst.
“I have flat feet, so I don’t walk correctly, making my knees, hips, and lower back hurt,” Kate explains. “I’ve had 14 surgeries in the past five years—mostly on my knees, but also on my feet, plus a kidney stone removal—and I use crutches, all of which aggravate my lower back pain. Plus, I have hypermobile hips, and sometimes my sacroiliac (SI) joints get out of whack, probably from walking unevenly.”
All of these issues contribute to something Kate refers to as chronic-acute pain: the experience of having a chronically occurring series of acute injuries. “The pain is chronic, in that I have it all the time with no relief or specific injury or damage,” she explains. “But every so often, my SI joints flare up, causing acute pain that needs different treatment from what I do for the chronic pain.”
In addition to low back pain, Kate lives with depression and anxiety, temporomandibular joint dysfunction (TMJ), neck and shoulder pain, elbow pain (including osteoarthritis on one side), carpal tunnel syndrome, hypermobile joints, and a handful of other chronic conditions.
“I have an awesome physical therapist, who did his research on EDS and he’s been able to help a lot with my low back pain,” says Kate. He gives her exercises to do to alleviate some pain and helps loosen tight muscles so she can relax. Kate also uses heating pads, changes position frequently, and uses the hot tub at her gym to release muscle tension. Aquatic therapy has helped increase her mobility, and she gets a monthly massage.
In addition to all these things, Kate uses opioid medications to manage her pain. But lately, she’s had increasing obstacles to getting her medications; she’s required to visit her doctor once every month or two to get her prescription refilled, which is tough on high-pain days. Her insurance company could cancel her prescription at any time without explanation if the laws and regulations change, something she fears. More health care organizations are removing all (or almost all) patients from opioids, and she’s afraid that anytime she sees one of her doctors, they might want to take her off opioids without totally understanding her pain.
“I had my meds stolen, and I had to go through police reports, appointments, and phone calls to get the replacement medication I depend on to live my life,” says Kate. “I was made to feel it was my fault that the meds were stolen.” Kate says that with all the rules and regulations doctors have to follow, they can seem suspicious of all patients. “While I freely admit that opioid addiction and death are a serious problem, so often people forget about those of us who rely on these medications to function.”
Kate says a frequent challenge she’s faced is denial of medication post-surgery. Her pain can be quite extreme, but she doesn’t often show that pain on her face or in her body language, so at times, it’s been impossible to get health care providers to believe the high level of her pain. “Medicine is so stuck in protocols and what the ‘typical’ patient needs that when a patient comes around that doesn’t fit in their boxes, health care providers can get stuck in the protocol, to the detriment of the patient,” says Kate.
She says she’s hoping for the development of effective non-opioid pain medications. “A non-opioid medication that works for me would help with issues of access to medication, and eliminate the stigma associated with taking opioids—that would be a relief,” says Kate.
“I’d also love for more insurance companies to cover alternative sources of pain management,” she adds. “Obviously there needs to be some kind of indication that they’re effective, but I don’t think people are going to acupuncture just for funsies.” She finds it frustrating—and rather telling—that her insurance would rather cover a month’s worth of opioids (about $50) than massage (which can cost between $70 and $150 per visit).
She says she’ll keep doing both, because it’s important to her to take the best care of herself that she can. She also sees a health psychologist and another counselor a few times a month; journals to process her feelings and frustrations; practices self-care every day, like taking care of her personal hygiene so she feels “put together”; and tracks her pain levels to spot trends.
Kate says her pain and reduced mobility caused her to lose her job in 2017, and four months later she was approved for disability benefits. “For most of my life, EDS wasn’t an active issue—I was able to do so much, I planned my days from 8am to 10pm and had a very full life,” she says. “The last couple years, my disability and pain took over my life. It took me a while to understand how limited I had become.”
Losing her work life was a huge blow to her sense of self-worth. “I had won a lot of awards, was one of the people on my team with the longest tenure and a lot of experience, and loved my work—that was really hard to lose.” Kate says she misses all the daily interactions she enjoyed with co-workers and friends.
“I feel at loose ends a lot of the time now because I don’t have a lot of the activities that used to take up my time, and even though I have more time now, I’ve been severely limited in what I can do,” says Kate. “My pain is unpredictable, so I’ve had to cancel on plans at the last minute and miss important events. I always have to make sure people understand that plans are tentative, and continually have to weigh activities against the pain they’ll cause and what I can do to treat that pain—is it worth having the pain in order to do the thing?”
“You have to respect the pain and accept where it’s taking you—and respect your body’s needs,” says Kate. “Having to learn to be compassionate for myself has been essential. I’ve always been an overachiever, always volunteered for things, so it’s difficult to slow down and say no. But I’m learning to appreciate other things about myself and my life. I try not to look at my disability as ruining my life and think instead that it is changing my life.”
One thing that Kate says has helped her practice this kind of self-compassion and acceptance is membership in the ChronicBabe Secret Club, a low-cost monthly subscription program designed by U.S. Pain ambassador Jenni Grover to teach people how to live as well as possible in spite of chronic illness. “I love how Jenni has so many different ways to interact with members: emails, a Facebook group, live calls, music playlists,” says Kate. “It is a place to find solutions, support each other, and lift each other up. I have gotten so much from the group and I’m able to offer support to others, too.”
Feeling the love
Kate is also thankful for her husband, Ben, who has stayed by her side through the toughest moments. They met in 2012, and after only six weeks of dating, she ruptured a tendon and needed help with even basic household activities during recovery—and Ben said he would stay with her and care for her. As the relationship progressed, “I told Ben, ‘I understand that this is something you did not sign up for,’ but he called me crazy, and said he would take care of me for the rest of his life,” says Kate. He has supported and advocated for her ever since.
Kate hopes the lessons she’s learned can help others: “Honor your feelings and limitations, positive and negative. Be kind to yourself; it will be difficult because limitations suck. It’s going to be a part of your life, and not letting it take over can be hard. Advocate for yourself and the assistance you need—among friends and family, at work, and with doctors. You only have one body, and it deserves to be cared for.”
Ehlers-Danlos Society: ehlers-danlos.com
ChronicBabe Secret Club Membership: chronicbabe.com/secretclub
American Chronic Pain Association: theacpa.org