Living with axial spondyloarthritis (axSpA) is full of surprises. One day I think, “Okay, this isn’t as hard as I thought, I’ve got this.” The next day, I wake up and can barely do anything.
On a bad axSpA flare day, I feel like a deflated balloon, my body heavy with invisible chains. My motivation disappears, getting out of bed feels impossible, and sometimes I just wish I could lie there and do nothing. Even finding a comfortable position in bed without making the pain worse can feel like a challenge on its own.
It’s strange how axSpA stops me from doing things but doesn’t let me rest. Honestly, the fact that I can’t even do nothing hits me the hardest. I’m dramatic, I know.
Some days, living with axSpA feels manageable. Other days, even simple movements like climbing stairs, bending down, or picking something up can feel exhausting.
I want to share what a real bad axSpA day feels like for me: physically, emotionally, and mentally, plus the small things that help me cope. If you’re living with chronic back pain or axSpA, you might relate. And if not, this is a small window into life with a chronic inflammatory condition.
How axSpA Affects Everyday Movement
During an axSpA flare, even basic movements become complicated. Standing, sitting, or lying down all require adjustment. Certain movements like bending, twisting, or lifting a leg can suddenly trigger sharp pain.
It feels like a jolt runs through my body, forcing me to pause mid-movement. I keep adjusting until I find the least painful position just to sit or stand.
I never thought something like standing on one foot would require so much thought until I had to put my trousers on. Simple daily tasks I once did without thinking now require planning and patience. Even picking something up from the floor becomes a small challenge.
Before my diagnosis, I never paid attention to these movements. Now I realise how much our bodies quietly do for us every day. It makes me appreciate my body in a different way.
The Emotional Impact of an axSpA Flare
Bad axSpA days are not just physical — they are deeply emotional.
I feel lonely. Frustrated. Irritable. Sometimes I don’t feel like talking because I worry I might snap or hurt someone’s feelings. I miss the version of me who could move freely and keep up with life without thinking about pain.
I often think about how long the pain will last. Sometimes the fear of it becoming permanent creeps in, even though I try not to dwell on it. It can feel like all the progress I’ve made in accepting my condition disappears in one bad day.
My emotions swing like a roller coaster. One moment I feel okay. The next, I’m sitting quietly thinking, “Why me?”
Living with chronic back pain and axSpA flare days can feel isolating, even when you’re surrounded by people who care.
How I Cope With a Bad axSpA Day
I Try to Be Kind to Myself
It’s always easier to be kind to other people than it is to ourselves. On bad days, I try to remind myself to be kind to me. Instead of fighting my emotions or pretending I’m okay, I let myself feel however I’m feeling. Sometimes just accepting that I’m having a bad day takes a little weight off my shoulders.
I Keep My Expectations Realistic
I usually make a small list of things I’d like to get done that day, but I keep it realistic. Some days, making the bed or taking a shower is enough. Checking those little things off still feels like an achievement. Instead of thinking about everything I can’t do, I try to focus on what I can.
I Keep Moving, Just a Little
As tempting as it is to stay in bed all day, I’ve found that my body usually feels worse if I don’t move at all. On bad days, I swap my usual yoga practice for gentle stretches and try to move around the house every now and then. Nothing intense, just enough to stop my body from becoming even stiffer.
I Use Heat or Cold, Depending on How I Feel
I’ve realised this is different for everyone. Personally, when the pain is really bad, I usually reach for a cold compress. On days when I’m feeling particularly stiff, I find warmth helps me loosen up.
I Keep Warm
Cold weather and I are definitely not friends. I wrap myself up, stay cosy, and almost always have a hot drink nearby. It sounds simple, but it genuinely makes me feel more comfortable.
Finding Strength on Difficult Days
On difficult days, I remind myself to treat myself the same way I’d treat someone I love.
I don’t always tell people when I’m having a bad day. My family is incredibly supportive, but sometimes I don’t want to worry them. It can also be difficult because pain isn’t something people can see, and it’s not always easy to explain how much it affects you.
When I need a little reassurance, I often read posts from NASS or scroll through online support groups. Reading other people’s stories reminds me that I’m not the only one having days like this.
One thing I’m still learning is that healing isn’t linear. Some days are hard. Some days are better. On the difficult days, I remind myself that simply getting through the day is enough. Even the smallest wins still count.
You’re Not Alone
Living with axial spondyloarthritis can feel isolating, but many people experience the same challenges every day.
If you’re living with axSpA, chronic back pain, or flare days, I hope this helps you feel a little less alone. I’m writing this on a real flare day, so everything here is honest and lived.
This blog is my space to share the reality of living with axSpA — the hard days, the better days, and everything in between.
Lots of love,
Ling