Working with Axial Spondyloarthritis: Prioritising My Health

Working with axial spondyloarthritis has made me rethink how I work in ways I never expected.

I used to feel guilty whenever I had to call in sick from work. I always felt like I should be able to push through.

I had been working full-time ever since I graduated. I valued job satisfaction, liked taking on new challenges and wanted to give work everything I had.

I wanted my university education to mean something. I liked earning my own money and being independent, and I didn’t want my health to take any of that away from me.

When I had my first major flare, a flare I simply couldn’t ignore, I had just completed my postgraduate professional training programme. I was excited to move on to the next chapter of my career.

I never thought my health would make me rethink the way I worked.

Working with Axial Spondyloarthritis and Managing Healthcare Appointments

Following my diagnosis of axial spondyloarthritis, my calendar quickly filled with hospital follow-ups, blood tests and GP appointments.

If you’d like to read about how I eventually got my diagnosis, I wrote about it in My Journey to an Axial Spondyloarthritis Diagnosis.

Because my job involved scheduled appointments, taking time off wasn’t as simple as just not turning up.

My manager was always supportive and made sure I could attend my medical appointments. But it often meant rearranging work appointments around hospital and GP appointments.

Sometimes, fitting a medical appointment into an already packed diary felt harder than rearranging the medical appointment itself.

I remember calling the hospital once to ask if I could reschedule a blood test because it had been booked at short notice.

I was asked, “Why can’t you just tell work it’s an important appointment?”

I eventually got the appointment rearranged, but the conversation stayed with me.

I started wondering whether this was really sustainable.

Working Through Pain with Axial Spondyloarthritis

The long periods of sitting and standing at work also aggravated my symptoms.

But I carried on.

I didn’t want my diagnosis to take over my life, so I tried to carry on as normally as I could.

Before I knew what was really going on, I had spent a long time thinking my back pain was just another injury. I shared that part of my story in I Kept Treating My Back Pain But It Kept Coming Back.

Even after my diagnosis, I still found myself pushing through.

When I had to lift heavy crates, I told myself to just “suck it up.”

When one painkiller stopped working, I changed to another. I gradually increased the dose to keep myself going, until eventually even the highest dose was no longer effective.

Looking back, I realise how used to pushing through I had become.

I wanted to keep working, keep earning my own money and keep living my life as normally as possible.

Eventually, I had to admit that I couldn’t keep doing things the same way.

Taking a Career Break Because of My Health

After a lot of thinking, I made the difficult decision to take a career break.

For the first time since I started working, I stepped away and gave my body a proper break.

It wasn’t easy.

I worried about money. I had savings, but I didn’t know how long they would last because I didn’t know how long the break would be.

Still, I knew I needed the time.

During my break, I spent more time with my family. I went for one-to-one private yoga and Pilates classes because I wanted to make sure I was moving safely. I played with the family dogs, had lunch dates with my mum, went out with friends and travelled.

For the first time in a long time, I experienced life without constantly thinking about work.

And as strange as it sounds, I sometimes missed it.

I missed having a routine.

I sometimes felt guilty for not working.

I even felt guilty about spending my savings instead of earning.

It was strange to step away from something I had spent so much of my life working towards.

Finding a Remote Job That Fits My Health

My career break gave me some time to think about what I wanted from work and what I needed from my working life.

After weighing up the pros and cons of returning to my previous job, I decided to look for something that fitted better around my life.

I took a pay cut and found a fully remote job that I was incredibly grateful for.

I never thought I would take a pay cut. I had worked hard to get to where I was, and for a long time, I saw my salary as a reflection of how far I had come.

But I started looking at the bigger picture.

A lower salary meant giving something up but the new job also gave me things that were becoming more important to me — more flexibility, less physical exhaustion, no commute and more time to look after myself. 

Not having to commute made a bigger difference than I expected. I wasn’t as tired at the end of the day, and travelling to and from work could be particularly difficult when I was having a flare.

I could get up and take regular breaks. I could fit in yoga or exercise after work.

Most importantly, I no longer had to keep rearranging my work appointments around my medical appointments.

For the first time, I felt like I could look after myself while still having job satisfaction.

I thought I had finally found something that worked for me.

An Axial Spondyloarthritis Flare Changed Things Again

Just when I thought I had found the right balance, I had a back injury.

It triggered a severe axial spondyloarthritis flare.

I wrote more about what one of my worst flare days felt like in What a Bad Axial Spondyloarthritis Day Feels Like.

This flare affected me differently from what I had experienced before.

My fatigue became much worse. I couldn’t sit for very long, and I couldn’t stand for very long either.

By the end of my shift, I was extremely tired.

What I found difficult was that I didn’t seem to be recovering from the flare. I kept thinking that with a bit more time, I’d get back to how I was before, but the fatigue and pain were still there.

I was still working but I could feel that it was taking more out of me than it used to.

That’s when I started wondering whether working remotely was enough.

Maybe I needed to make another change.

Considering Reduced Working Hours

I started considering reducing my working hours.

This decision was harder than taking a career break. I’m not entirely sure why. Maybe the career break felt temporary, while reducing my hours felt like a bigger change to the future I had imagined for myself.

The what-ifs started creeping in.

Would I still be able to save every month?

Would I still be able to afford travelling?

Would I still be able to buy the things I enjoy?

What if my condition gets worse in the future and I can no longer work?

But it wasn’t only about money.

I had spent years building my career. I wanted to create value, take on challenges and feel that the work I did meant something. The thought of working fewer hours made me wonder whether I was moving away from the career I had worked so hard to build.

That was difficult for me to accept.

At the same time, I knew I couldn’t keep working in the same way and expect my body to simply keep up.

Thankfully, my company has also been very supportive. When I started considering reducing my hours, I had a meeting with my manager and someone from our HR to talk through my situation and understand what support might be available to me.

I also did some research myself and came across the UK government’s information about reasonable adjustments for disabled workers. I found it helpful to understand what support and adjustments might be available.

Everyone’s circumstances are different, so I don’t think there is one solution that works for everyone. Having an open conversation with my employer helped them understand what I was struggling with, while also helping me understand what support was available and what was expected of me.

I’m glad there are different ways of working that could allow me to look after my health while still doing work that I find meaningful.

Creating value doesn’t necessarily require me to work full-time or have a high-paying job.

Maybe I’m not giving up on my ambitions.

Maybe I just need to rethink what success means to me now.

But honestly, I’m still figuring that out.

Prioritising Health Without Knowing What Comes Next 

The more I think about it, the more I realise that there probably isn’t one right answer.

We all have different circumstances, priorities and things that matter to us at different stages of our lives.

It’s easy to look at the path we didn’t take and imagine that it would have been better. But we don’t really know what that path would have looked like.

I don’t think any of us really know where a decision will lead until we make it.

Would I have made the same decisions ten years ago?

Probably not.

But I’m not ten years in the past.

I’m here, now.

For now, I’ve chosen to reduce my working hours and give myself more space to look after my health.

I still worry about money and my career. I still wonder whether I’ve made the right decision.

But I also know that I can’t predict what my health or my life will look like years from now.

I’m just trying to make the best decision I can with the circumstances I have right now.

I spent a long time believing that I had to keep pushing myself to prove that I could.

Maybe I don’t need to prove that anymore.

For now, I’m choosing health.

And I’m choosing to live my gift.

Lots of love,

Ling