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.
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.
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.
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.
Input your search keywords and press Enter.