The Emotional Toll of Chronic Back Pain
There’s back pain that comes and goes—maybe you tweaked something while working out or doing housework—and then there’s back pain that comes, sets up home in your body, and shows no signs of leaving. It’s this second kind, chronic back pain, that does a real number on your physical and mental health—something you’ll see in these stories from four brave women navigating chronic pain.
Jessica Dorsey, 38, Austin, Texas
Two years ago, after living almost her entire life with unexplained joint pain, Jessica Dorsey was diagnosed with non-radiographic axial spondyloarthritis (nr-axSpA), a type of inflammatory arthritis that generally affects the spine and other joints. “In my 30s my stiffness got so bad I would get out of bed in the morning and hunch over, hobbling around,” she says. While she’s now on a medication that has drastically improved her symptoms, there is no cure for nr-axSpA. “I still get breakthrough symptoms, like this past week my neck, upper back, and spine have been very stiff, where it feels like everything is locked and I can’t move it,” she says.
As a competitive runner Dorsey really struggled with the unpredictability of her back pain. “I might be doing so well and then suddenly I’d experience a flare that stops me in my tracks. It’s really hard to stay motivated,” she says. As a result she stopped signing up for races. “Racing and having goals were big parts of my identity, but it got to a point where it felt pointless to put races on my calendar that I might not be able to do,” she says. “Even if I’m committed I might not be able to see it through, and that’s just frustrating.”
Dorsey had to work hard to shift her mindset around physical activity. “I’ve come around to the fact that some days I can do a whole lot and some days I might only be able to go for a walk,” she says. “I can always do something, and that has to be enough.” And then there’s the brave face she has to put on for others. “This is one of those invisible diseases, and for the most part it’s always there…. You get used to living with a baseline of pain,” she says. “You might seem normal because you aren’t going to just mope all the time, but I’m always dealing with it.”
She also has a lot of fear about the future, since she’s on a biologic drug that’s helping for now but could suddenly stop working one day, something known as treatment failure. “I would need to find another medication, but I’m young, and I might not find another one that works. It’s scary to think you can run out of options,” she says.
Charlotte Bridger, 29, Brighton, England
In 2021, after three months of extreme back pain, Charlotte Bridger was diagnosed with adenomyosis, a condition where the endometrial tissue, which typically lines the uterus, starts growing into the wall of the organ. “I remember letting my dog out the back door one day, shutting the door, and curling up on the floor because of the back pain,” she says. “I couldn’t even reach up to open it back up.”
While the only cure for adenomyosis is a hysterectomy, a surgery that removes the uterus, Bridger has found a tremendous amount of relief through alternative treatments like herbal medications. “I still have back pain, but now it’s not every day, and it’s for shorter periods of time, usually when I overdo something physically,” she says. But that’s a recent development. For two years prior, she had back pain every single day—an experience she is still processing. “It was really isolating,” she says. “I was physically not really able to move, and people just don’t understand. You end up feeling like a burden because you don’t want to constantly repeat that you aren’t doing great when people ask how you are.”
And because her pain would fluctuate, others didn’t always buy how severe it was. “It’s something people can’t see, so I feel like people don’t believe me,” she says. “If one day I can walk the dogs, but the next day I need to lay down, my partner may not get why I can’t cook dinner that night.” As a result Bridger often ended up keeping things to herself. “It’s like you need to remind people of your back pain so they don’t forget, but you don’t want to remind them because you don’t want to be annoying.”
Kimberly Bohets, 33, Antwerp, Belgium
Some people find relief in getting a diagnosis because they finally understand what’s going on. But when Kimberly Bohets found out she had axial spondyloarthritis (axSpA) almost two years ago, she found it hard to process. “I was glad to know what it was, but I took a hard hit with the diagnosis. It changed the way I move through the world,” she says. “I struggled to accept that my life would be different from then on; it changed my energy level in a big way.” AxSpA (also referred to as ankylosing spondylitis, or AS) is a more severe form of nr-axSpA that is diagnosed if there’s visible damage in X-rays of the spine and sacroiliac joints in the pelvis. At the time of her diagnosis, Bohets had so much pain she could barely get out of bed in the morning. “These days I have pain pretty much on a daily basis, but the severity fluctuates,” she says. “The best way to describe it is that it feels like there’s a fire inside my back and hips.”
For Bohets, comparing the “before axSpA” and “after axSpA” periods of her life can be pretty jarring. “I could do everything I wanted—work long days, do things around my house—and now I can’t even consistently cook dinner for myself, much less join my friends out at a restaurant if I’m having a bad day,” she says. It was tempting for Bohets to ignore her body’s signs that she needed to slow down and rest more, but it got so bad that she ultimately had to take a leave of absence from her job in the medical industry. “I had this idea that I could still do everything I wanted to do, and I kind of walked into a wall,” she says. “I couldn’t focus anymore; my concentration was gone. I could barely get out of bed.”
While Bohets tries to stay optimistic as she figures out what her life will look like going forward, it can be hard. “I try to focus on the things I’m still able to do: that I can go on a walk outside, prepare dinner some days, go to the gym. That’s what I’m trying to focus on because I don’t want to get into the dark hole about having to live with pain on a daily basis.”
Kiran Kedge, 32, Pune, India
Kiran Kedge, can’t remember a day since 2009, when she was diagnosed with AS, that she hasn’t had pain. “It’s always there and always will be there,” she says. AS is a condition where the joints and ligaments of the spine are inflamed and, in severe cases like Kedge’s, some of the vertebrae grow together. “I have fusion in a certain part of my spine, so my posture is a little bit messed up, and the muscles around that part of my spine get quite stiff, like a rock,” she says.
While Kedge prides herself on coming up with ways to improve her pain—including by doing spinal rotations while sitting in her desk chair, prioritizing sleep, and stretching—she still finds it challenging to keep her spirits up. “I was engaged to someone who left me, saying they can’t see me in pain, that they don’t want to sign up for that for their entire life,” she says. “Someone else told me that my pain freaks them out.” Because of those kinds of reactions, Kedge does everything she can to live a “normal” life, like continuing to go out partying with her friends. “I try to go out and enjoy my life, but that doesn’t mean I’m not in pain,” she says.
Because AS affects your posture, Kedge has also struggled with her confidence. “My posture is a little slouched, so it’s hard to interact with new people because some ask why I’m standing or walking like this,” she says. “For me to explain AS from scratch is exhausting.” As a result she’s pulled back from one of her favorite activities: dancing. “I feel self-conscious of what people will think,” she says. “I see old photos of myself and feel like crying because I know in this lifetime I’ll never go back to looking that way. I do feel proud of myself that I’ve come so far, and I’m still hopeful things will work out great in my life. Everybody has some sort of problem; it’s just that, in my case, it’s my back.”
One constant among these four stories is how isolating it can feel to have an invisible chronic illness. If you’re in a similar situation, instead of suffering solo, consider joining a support group for people with the same condition. Even linking up with folks on social media who are going through a similar situation can be beneficial. That way you know where to turn when your days get a little dark.
If you need more support, consider seeking therapy or dialing 988 to reach the Suicide & Crisis Lifeline, which provides immediate access to mental health resources.
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