Navigating Flares: My Experience and What Helps Me Get Through by Helen Jones

I’ve been living with ankylosing spondylitis (AS) for a while now, and during this time, I’ve tried to find ways to make it more manageable and, most importantly, less isolating. Recently, I shared a video on my Instagram (@helenjonescoaching) describing what an AS flare-up really feels like. I made this video for two reasons: first, to help those with the disease feel less alone, and second, to give them a resource they could share with their friends, family, and colleagues to help them better understand what we go through. I’ve received an overwhelming response from others living with AS, saying how it has helped them and opened up conversations with their loved ones that otherwise wouldn’t have happened.

One of the toughest parts of AS is its invisibility; it can lead to misunderstandings and a sense of isolation when others can’t see what you’re going through. That’s why I want to shed light on what a flare-up really feels like—especially the mental toll—and share what helps me get through these challenging periods.

How I Define AS for the Uninitiated

I describe AS as a type of inflammatory arthritis and autoimmune disease that primarily affects the spine and pelvic joints, causing chronic inflammation. It’s characterised by flares – periods when the symptoms worsen significantly. It’s a disease that impacts each person differently, so I want to emphasise that what I’m sharing is my personal experience.

Physical Symptoms of Flares

The first symptom I experience during a flare is excruciating pain, mostly in my back and pelvis joints. I also experience enthesitis, causing pain in my feet and hands where tendons and ligaments attach to bones. Next, there’s the stiffness. My back and neck get so stiff, and I just feel much older than I actually am.

Fatigue is another big symptom. The inflammation that’s happening in your body is physically exhausting. And on top of this, I feel so much guilt for having the fatigue and frustration for not being able to do all the normal things that I would like to do. The catch-22 in all of this is that resting can worsen the pain. So, you’re stuck in this dilemma of figuring out the best way to take care of yourself.

Mental and Emotional Impact of Flares

Physically, AS is challenging enough, but I find the mental and emotional effects to be even more difficult. A recent study found that 75% of people with AS experience depression or emotional distress during a flare, which resonates deeply with me. How I describe it is that I feel like a big black cloud comes over me and everything in my brain becomes foggy, and I notice my mental chatter gets negative and I feel like I just can’t shift it or get out of it. And I just do not feel like me when I’m in it.

I feel like a different person. I find myself wanting to withdraw from social situations because I can’t keep up the high energy I usually have. I notice my fuse is shorter and I have far less tolerance than I normally do, which isn’t my typical nature at all. I put a lot of pressure on myself to stay upbeat, but during a flare, it’s as if that part of me just disappears. And when I’m in that dark place, it’s hard to remember that this isn’t permanent – it’s just a flare and it will pass.

My Mental Tips for Getting Through Flares

There’s a lot of useful information out there on what to do physically during a flare, but I wasn’t aware just how tough the mental and emotional challenge of AS would be. Going through this experience inspired me to become a coach so I could support others facing similar struggles. With that in mind, I want to share strategies that have helped myself and others to manage the mental toll of flares.

Acceptance and Self-Compassion
Fighting against a flare only creates more mental anguish. Accepting and reminding myself that this is temporary and that it will pass, even though it feels endless at the time, is crucial. I try to reframe my mindset: this is just my body doing its best to heal.
Writing a Letter to My Flare-Up Self
When I’m on the other side of a flare and feeling a little better, I often write a letter to myself in the middle of the flare. I remind her that the pain and fatigue are temporary, and I give her advice on what normally helps. I can’t tell you how much this practice supports me. While advice from friends and family is nice, there’s something uniquely powerful about hearing it from yourself, from a place of understanding and compassion.
Gratitude Practice
During flares, I make an effort to practise gratitude, but I shift the focus specifically to what my body can do for me. It’s easy to feel like your body is betraying you when you’re in pain, but consciously acknowledging the small things it does helps to shift my mindset.
Re-Prioritising and Saying No
I have to remind myself constantly that it’s okay to say no during a flare. I list out all my tasks and rank them by priority, committing to only the top few. Everything else can wait until I’m feeling more like myself again. This approach helps ease the guilt and pressure I feel to keep up with everything.
Connecting with Others
Talking to someone who understands, whether it’s a loved one, a support group, or even someone on social media. Just sharing how you’re feeling can lift some of the weight off your shoulders.
Journaling to Release Thoughts
Writing down my thoughts is a big one for me. When those negative thoughts are swirling around in my head, they have so much power. But putting them down on paper gives me some distance from them, making them feel less intense.
Celebrating Small Wins
Even on the toughest days, I try to celebrate small achievements, whether it’s getting out of bed, doing a 5-minute stretch, or making a nourishing meal. Acknowledging these wins, no matter how small, helps you feel accomplished and motivated, even when progress feels slow.

These are just a few things that have helped me and others, and I hope some of these strategies might help you too. Don’t overwhelm yourself, just pick one or two that resonate and see if they make a difference the next time you’re in a flare.

AS flares can make life feel overwhelming, but you don’t have to go through them alone. I share more about my experiences and the strategies that have helped me on my Instagram (@helenjonescoaching), and I’d love to connect with others living with AS. The more we share, the less isolated we feel, and together, we can build a supportive community that truly understands life with AS.