Sarah’s story

As part of World AS Day on Saturday 6th May 2023, we are sharing stories from some of our community about their journey to diagnosis and their experience of living with axial SpA. 

Sarah shares her journey to diagnosis, how she has used swimming to help manage her symptoms and as a way to incorporate movement and exercise into her routine.

“I was diagnosed with axial SpA aged 37 after a year of rib pain and 6 months of limping with sacroiliac joint pain which was initially thought to be a pelvic stress fracture.  I am a GP and the pain and stiffness always felt inflammatory to me and I started to notice my hip would flare alongside my ribcage.  I saw a rheumatologist who made a clinical diagnosis of axial SpA and my MRI scan was in keeping with this.  A diagnosis that made sense was a relief and I am aware that many people, particularly women wait a lot longer than a year for the right diagnosis.

My children were young, aged 7 and 5 at the time, and I had been unable to join in a lot of active games/sports or comfortably play on the floor as it was so difficult to get up again.  I started taking the anti-inflammatory medication, etoricoxib, with good effect and felt I got my life back.  I also started swimming again. I have always been a swimmer but struggled to find time with young children. It felt so good!  I joined a swimming fitness class and have been grateful for the support and camaraderie.  The conversations I was having in the pool were so different to on dry land. The usual comments of ‘why are you limping/what have you done?’ followed by some well-meaning but not often helpful advice were replaced with ‘you swim beautifully’ and other general chat while my limp was hidden.

I was fortunate to enjoy around 4 years of being close to symptom free until Covid changed all of our lives.  My symptom control deteriorated.  I am not certain whether Covid is a factor or if this could be in keeping with the perimenopause.  This has prompted me to start looking into menopause and axial SpA.  I guess I was hoping to find that my symptoms may resolve or otherwise that HRT might help. Instead, I found a distinct lack of evidence, just a few anecdotal stories and limited data pointing towards oestrogen overall having anti-inflammatory properties but nothing conclusive.

I have decided now is the right time to start biologics but it would be useful to know more about how things are likely to change anyway over the next 10 years as my hormones change.  I am hopeful that the work NASS do could help fill this knowledge gap so women can make informed choices in the future.

With the swimming pools closed during Covid, I embraced the cold and became part of the 300% rise in wild swimming attributed to the pandemic.  I am of course completely hooked now!  For long distances, I use a wetsuit but I can enjoy dipping in ‘skins’ too. I took part in my first open water swimming events last September, 3k at Loch Lomond and 5k at Loch Morlich as part of the Go Swim series.  I thoroughly enjoyed the event atmosphere and am looking forward to pushing myself further this year with the ‘Scilly Swim Challenge’, along with my husband, and raising funds for NASS

This is a one-day event of 6 swims and 6 walks to complete a circuit of the beautiful Scilly Isles.  It is a total of 15km swimming between the islands and 10km walking across them.  This is very much a ‘When life gives you lemons…’ response to my axial SpA. I am so grateful to be able to swim in open water and using it to help manage my symptoms.”

If you would like to make a donation towards Sarah’s ‘Scilly Swim Challenge’, visit her Just Giving page.