Fiction informed by research
About this story
This is a fictional narrative informed by published research about chronic pain and relationships. Jenna, Ray and their family are fictional characters. Their conversations, personal histories and the events described were created for this story; they are not a verified account of an individual family.
The linked research supports the factual discussion of health and support services. It does not document the characters’ experiences or establish that another person will respond to treatment in the same way. This story offers perspective and information, not individual medical advice.
AI research disclosure: AI tools were used to assist research for this article.
Narrator: The first-person voice below belongs to Jenna, a fictional character, rather than Jessica White.
The sound I remember most is the truck door.
For eleven years Ray worked as a lineman, and every evening I'd hear his work truck pull into the driveway in Elk Grove, then the door swing shut with a heavy, satisfied thunk. That sound meant he was home. It meant dinner, our son Mateo yelling "Dad!" from the hallway, Ray kicking off his boots and complaining about the heat on the poles.
The last year he worked, the door stopped thunking. He'd sit in the cab for ten, sometimes fifteen minutes before he got out. I used to watch him from the kitchen window, his hands still on the wheel, staring at nothing. I thought he was decompressing. He was actually working up to the movement of swinging his legs out, because his spine and hips had locked in the drive home and he knew the first step would feel like being stabbed.
He didn't tell me that for months. That's the first thing you should know about my husband, and maybe about yours.
The Nine Years Before Anyone Said a Name
Ray's back started hurting when he was 29. Every doctor had the same theory: he climbs poles for a living, of course his back hurts. He got muscle relaxants, a chiropractor, a lecture about lifting with his legs.
What none of them caught at first was the strange shape of his pain. It was worst in the early hours of the morning. It woke him up around 4 a.m., and the only thing that helped was getting up and walking around the dark house. A long hot shower and moving around loosened him up. Resting made it worse. I'd find him doing stretches on the living room carpet before sunrise and think he was just being a jock about it.
By the time a rheumatologist finally ordered an MRI of his sacroiliac joints and said the words "ankylosing spondylitis," Ray was 38. Nine years. I later learned that's not unusual. A study published in 2023 surveyed 228 U.S. adults with axial spondyloarthritis in 2021. In that group, the average diagnostic delay was 8.8 years, and 64.5% reported an earlier misdiagnosis. Those figures describe that survey, not every patient’s experience.
If you're early in this, here's what I wish someone had told me: Back pain that worsens with rest, improves with movement, or wakes someone at night can be a feature of inflammatory arthritis. Those signs are a reason to ask for medical assessment; they cannot tell you the diagnosis on their own. Write it down. Bring the notes. Ask, out loud, whether it could be inflammatory and whether he should see a rheumatologist. I spent years being polite in waiting rooms. Being polite cost us time.
The diagnosis was a relief for about a week. Then it turned into something heavier.
When the Pain Took His Work, It Took His Voice
AS is an inflammatory arthritis that mainly targets the spine and the joints where the spine meets the pelvis. Ray's case was aggressive. Within a year of diagnosis, he couldn't pass the physical requirements for his job. He went on disability through the state, and then the company found him a desk role he lasted four months in, because sitting eight hours a day was its own kind of torture.
I want to be honest about what happened next, because nobody was honest with me.
My husband got very quiet. Not the peaceful kind. The kind where a room gets colder when he walks into it.
He stopped going to Mateo's baseball games because the bleachers were unbearable and he couldn't stand the idea of other dads seeing him shift and wince. He stopped answering texts from his crew. He'd sit in the garage with the radio on and his hands around a beer he wasn't drinking.
When I asked how he was, he said "fine." When I pushed, he said, "What do you want me to say, Jen? That I'm useless? Fine. I'm useless."
And then, one night after a terrible flare, he said the thing I still hear: "You signed up for a man who could carry you up the stairs. You got a guy who can't carry the groceries."
I wish I could tell you I said something wise. I didn't. I said, "That's not fair," and went and cleaned the kitchen because I didn't know what else to do with my hands.
The Ways I Got It Wrong
I'm putting this section near the top because I think it's the most useful thing I can give you.
I became his nurse. I took over everything. I carried the laundry before he could reach for it. I said "Let me do that" twenty times a day. I tracked his medication, his appointments, his diet, his posture. I thought I was loving him. I had stopped asking which help he wanted. Needing practical help did not make him fragile; having every decision taken out of his hands made him feel that way.
It took a pain psychologist to show me there's research on exactly this. Partners' responses to pain tend to fall into patterns. One is called “solicitous” responding, which includes expressions of concern and practical help directed at pain. That is broader than hovering, and it does not mean all help is harmful. A large 2026 review of 63 studies found that solicitous responses, along with hostile or dismissive "punishing" ones, were associated with worse pain-related outcomes. The responses linked with better outcomes were empathic ones and support for the person's independence. A separate 2017 observational study of 145 people with knee osteoarthritis and their spouses linked more empathically responsive partners with better physical function over 18 months. It was not an ankylosing spondylitis trial, and it could not establish that empathy caused the improvement.
I'm not saying stop helping. The research here is more mixed than a single headline, and a systematic review of empathy in pain couples found that the most consistent harm came from invalidation: brushing off or doubting what your partner feels. These studies do not show that a spouse causes someone’s pain or should withhold needed care. What I took from it was simpler. Ray didn't need me to do everything. He needed me to believe him and to treat him like a capable adult.
I swung the other way when I was exhausted. Some days, I'll admit it, I sighed loudly when he cancelled plans. I said, "Again?" I rolled my eyes when he said he couldn't help move a couch. Those were the punishing responses. Hovering one day and resentful the next is about as confusing as it gets for someone already feeling like a burden.
I stopped telling him anything hard. I didn't want to add to his load, so I kept my fears, my money worries, and my loneliness to myself. He noticed. He thought it meant I'd given up on him being my partner. In a way, I had.
The Night I Asked the Question
About eighteen months after diagnosis, Ray gave his brother Tony his fishing gear. All of it. The rods he'd had since high school, the tackle box his dad had given him.
"I'm never going to use it," he said, like it was nothing.
Something in my stomach went cold. That night, after Mateo was asleep, I sat on the edge of the bed and made myself say it plainly, because a counselor I'd seen once had told me that vague questions get vague answers.
"Ray, are you thinking about killing yourself?"
He didn't answer for a long time. Then he said, "Not like, a plan. But I think about how much easier it would be for you."
I want every wife reading this to hear me: ask the question directly. Asking directly does not increase suicidal thoughts or behaviour. It opens a door he may not be able to open himself. Pain and suicide risk are tied together more closely than most people realize. A clinical review describes approximately twice the risk of death from suicide among people with chronic pain. That is a group-level finding, not a way to judge one person’s immediate risk.
We contacted urgent mental-health support that night. I stayed with Ray while we got help and involved Tony so I was not trying to handle it alone. With professional guidance, we made a plan to reduce access to things he could use to harm himself. Later, Ray invited me to a follow-up appointment. He started seeing a psychologist who specializes in chronic pain.
If you are worried about someone’s safety tonight, seek urgent professional help. If there is immediate danger, contact local emergency services and stay with the person if it is safe to do so. A missing plan does not mean there is no risk. NIMH explains how to ask, listen, help reduce access to lethal means, connect someone with support and follow up.
What Actually Helped Us
None of this happened in a neat order. It took the better part of two years, and we still slide backwards. But these are the things I would tell my younger self if I could reach her in that kitchen, scrubbing a clean counter at midnight.
I learned to ask one question
Instead of "Let me do that," I started asking: "Do you want help, or do you want company?"
Sometimes he wanted me to carry the basket. More often, he wanted me to sit on the step while he did it slowly, so it didn't feel like I was taking another thing from him. That one question changed the temperature in our house more than any medication.
We got the medical side organized, and I stayed in the room
The 2019 ACR/SAA/SPARTAN guidelines recommend physical therapy and nonsteroidal anti-inflammatory drugs, or NSAIDs, for active ankylosing spondylitis, with other medicines considered when disease remains active. The 2022 ASAS–EULAR recommendations also cover TNF inhibitors, IL-17 inhibitors and JAK inhibitors. The choice depends on disease activity, previous treatment and other health conditions; it belongs with the rheumatologist. Ray had been on an anti-inflammatory for years. The biologic came later, after his rheumatologist pushed his insurance for months.
It helped. It was not a miracle. On a scale of one to ten, his bad mornings went from an eight to about a five. That's the difference between him being able to drive Mateo to school and not.
The other piece was supervised physical therapy. The 2019 guidelines conditionally favour supervised exercise over passive treatments such as massage or heat; the evidence for that comparison was rated very low quality. Heat may still offer comfort. Exercise needs to suit the person and their clinical advice. For a man who'd defined himself by his body, having a structured program, with numbers and progress, gave him something to do besides wait. He still does his routine every morning. I don't remind him. That's his.
I go to the important appointments when Ray wants me there. We agree beforehand what he wants me to raise, and I bring a written list of what I've noticed, including the stuff he downplays. A doctor can't treat what they don't hear about, and Ray will tell a rheumatologist "it's been okay" in the middle of a flare.
I separated the pain from the person
We made a rule. When he says something cruel or hopeless in the middle of a flare, I'm allowed to say, "Is that you or is that the pain talking?" And he's allowed to say, "It's the pain. Give me an hour."
It sounds corny. It works, because it gives both of us an exit. We can pause instead of escalating. Afterwards, we come back to what was said and take responsibility for it. Pain and exhaustion can explain strain; they do not excuse cruelty or make either of us responsible for enduring abuse.
The rule cuts both ways. When I'm short with him because I've had four hours of sleep, he gets to ask if it's me or the exhaustion.
I grieved, on purpose
For a long time I felt like I wasn't allowed to grieve, because he was the one who was sick. Who was I to be sad?
But I'd lost things too. The camping trips up to Lake Tahoe. The man who'd throw Mateo into the pool. The future where we both retired early on his pension. Our sex life, which I'll get to.
My therapist had me write it all down. An actual list, called "What we lost." Then a second one, "What's still here." The second list was shorter at first. It's longer now.
I also gave myself a place to fall apart that wasn't in front of him. For me that was the car, parked at the far end of the Costco lot, for ten minutes. If you need that, take it. Crying in the car is not a sign that you're failing. It's maintenance.
We talked about sex like adults
AS pain and stiffness often worsen during rest or inactivity, including after prolonged sitting or overnight. For years, nighttime was when we'd been intimate, and that's exactly when Ray was tired and sore and dreading the next morning. So it stopped. And neither of us said a word about it for nearly a year, which did more damage than the pain did.
When we finally talked, it was awkward and he cried and so did I. Then we got practical. Afternoons on weekends, after a hot shower when he was loosest. Pillows. Positions where his spine wasn't taking the load. Him on his back more than he'd ever admit to his crew. A lot more touching that wasn't aimed at anything in particular.
Intimacy can include much more than intercourse. There is no obligation to have sex or push through pain. Talking about comfort, consent and different kinds of closeness gave us somewhere to start. A healthcare professional or qualified sex therapist may help if you want support.
I kept something that was only mine
On Thursday nights I go to a ceramics class at a community studio in Sacramento. I'm terrible at it. My bowls are lopsided. I would not give it up for anything.
At first I felt guilty leaving Ray for three hours. Then I noticed I came home kinder. He noticed too. A few months in, he said, "You're nicer on Thursdays," and we both laughed for the first time in weeks.
Caring for someone can bring emotional and practical strain. Having needs of my own did not mean I was failing Ray. Protecting a small piece of your own life is part of protecting the marriage.
I found people who understood
The Spondylitis Association of America runs support groups, and loved ones and caregivers are welcome, regardless of where you live. Their online forums have a section for marriage, spouses and significant others. I lurked there for months before posting anything. Reading other wives describe the exact silence I was living in made me feel less crazy.
Ray eventually went to an in-person meeting, grudgingly. He came home and said, "There was a guy there who used to be a firefighter." That was all. But he went back.
I handled the money and logistics instead of pretending they'd fix themselves
This is California-specific, but it mattered to us. When Ray started his biologic and had a rough couple of months, I qualified for California's Paid Family Leave, which can provide up to eight weeks of partial pay in a 12-month period to care for a seriously ill spouse, and you can break those weeks up rather than taking them all at once. Eligibility involves wage loss, covered work and contributions, and medical certification. I took mine in chunks around his worst stretches. One thing to know: PFL pays benefits but doesn't protect your job on its own, so check whether FMLA or the California Family Rights Act covers you.
I also looked into the state's Caregiver Resource Centers, a network of 11 nonprofits covering every county that offer things like counseling and support groups. Their published eligibility covers care for an adult with an adult-onset neurocognitive disorder, or someone aged 60 or over who needs help with daily living. Ray’s age and AS diagnosis alone did not meet those stated criteria, so I asked about referrals instead of assuming we qualified. Even when a service isn't the right fit, the people who answer those phones usually know who else to call.
And we sat down, finally, with a spreadsheet and a pot of coffee, and figured out what our life cost on one income plus his disability. It was terrifying. It was also less terrifying than not knowing.
I gave family one script, and let the rest go
Ray's mother kept sending him videos about anti-inflammatory diets and a guy in Arizona who "cured" his spine with cold plunges. His buddies kept saying, "You look fine, man."
I wrote one paragraph and sent it to everyone: what AS is, that it's an inflammatory arthritis rather than simply a strained back, that it's lifelong but treatable, and that the most helpful thing they could do was invite him to things anyway and not be weird when he had to leave early.
Some people got it. His brother Tony got it more than anyone. Some people didn't, and I stopped spending energy trying to convince them. Your job is not to educate every relative into empathy. Your job is to protect the people inside your house.
What It Looks Like Now
Ray is 44. He works part-time now, teaching safety classes for apprentice linemen. He can't climb, but he can tell a room of 22-year-olds exactly how they're going to get hurt if they're careless, and they listen to him because he's the real thing.
He still has bad weeks. Last month he had a flare that kept him on the couch for four days, and on the third day he said, "I hate this," and I said, "I know," and that was the whole conversation. I didn't fix it. I didn't try. I sat next to him and we watched a terrible baseball game.
The truck door thunks again, mostly. It's a smaller truck. He gets out a little slower. But he gets out, and he comes inside, and Mateo still yells "Dad!" from the hallway.
I won't pretend this is the marriage we planned. It isn't. Some of what we lost is not coming back. But I've stopped measuring our life against the one we expected, and I've started paying attention to the one we have. It has more honesty in it than the old one did. I know my husband better now, at his worst and on his good days, than I did when he could carry me up the stairs.
If Your Husband Is in Constant Pain Too
You're probably reading this late at night. Maybe he's asleep in the next room, or maybe he's awake and you're pretending not to know.
Here's what I'd want you to hear:
- Believe him, even when you can't see it. Doubt does more damage than almost anything else you can do.
- Ask before you help. "Help or company?" will save you both a lot of grief.
- Support him in getting appropriate care. Offer to attend if he wants you there. Agree what to raise and bring notes.
- If he seems hopeless, ask him directly about suicide. Seek urgent support and help reduce access to things he could use to harm himself. Contact local emergency services if there is immediate danger.
- Grieve your losses too. You're allowed to. It doesn't make you selfish.
- Talk about sex before the silence calcifies. Change the when and the how, not the closeness.
- Keep one thing that's yours. A class, a walk, a friend, a car in a parking lot.
- Find other partners who get it. You are far from the only one. The CDC estimates 24.3% of U.S. adults lived with chronic pain in 2023. That's a lot of spouses lying awake.
You are not his nurse, his therapist, or his savior. You're his wife. Some days that will mean doing more than you thought you could. Other days it will mean doing less and trusting him to carry his part.
Both of those count as love.
If you or your partner are in crisis: Seek urgent help from a local crisis service or healthcare professional. If there is immediate danger, contact local emergency services. Stay with the person if it is safe to do so.
A note on the narrative: The characters and events in this story are fictional. Sources linked throughout support the factual information, rather than the invented family account.
