No longer at sea, but swimming towards a bright future

32-year-old Emma O’Carroll was diagnosed with ankylosing spondylitis, otherwise known as ‘axial spondyloarthritis’ (or axSpA) in 2021. On the very day of her diagnosis, Emma began searching online for information about her condition. This is when she first came across Arthritis Ireland. Since then, she credits the organisation with providing a vital lifeline at a time when she felt completely out at sea and alone facing her diagnosis. Emma is the 2024 EULAR Edgar Stene Prize Winner and travelled to Vienna in June to receive her award. 

Too young to struggle with fatigue and pain 

“It all went back to my twenties. All through that decade, I had generalised aches and pains. I would also suffer from back ache and seemed more tired than most people my age. I would just put it down to a busy life and I honestly thought my back was just strained from my nursing training.  

“But then it got to the point where that daily pain began interfering with my life. The pain really ramped up in 2019, and soon my entire spine and ribs were affected. I wasn’t sleeping at night either – I was in so much pain and just so stiff that I had to get up several times a night to stretch. Things became so bad that I couldn’t even get out of bed without assistance in the mornings. At work, it would take hours for me to loosen up – so much so that I had to book early morning physiotherapy appointments just so I could get through the day’s work.” 

Out at sea with no answers 

“Over the course of one to two years, I attended my GP several times. No blood tests or other investigations, such as scans, were ever suggested. The most distressing point was when my GP told me that my symptoms were down to laziness.  

“Despite my medical background (I had studied nursing for four years in UCC and had worked as a phlebotomist and GP assistant at this point), I got bulldozed into accepting this position. Bear in mind that, at this point, I could barely sit up in bed and the tightness in my chest was so severe that I was unable to take deep inhalations. I told my GP all this, but she said it was just all anxiety.” 

Feeling invisible and dismissed 

“When I mentioned axSpA to some people, I was scoffed at by a medical colleague and told that it’s a man’s disease (axSpA was traditionally believed to primarily affect males, but recent research studies show that women simply have a different axSpA disease course than men). My brother was in his final year of medicine at the time. He pulled out the notes on ankylosing spondylitis and we both agreed that I ticked a lot of the boxes but, despite this, I often felt like I was made a fool of. 

“As a result of what I’ve experienced, and what I see in the health service, I believe that, as a woman, you can be invisible in the healthcare system. People can think that, when a woman complains of pain, it’s kind of a hysterical thing and it can’t really be as bad as you say it is. Thankfully awareness is improving, and the rheumatology community are very aware of axSpA in women, but a lot of GPs still think it’s primarily just a male disorder. 

“It was my physio who finally gave me the courage to believe that something inflammatory was going on. She said that my spine was like concrete when she tried to adjust it and that I should get another opinion. The initial suggestions were that I had a herniated disc, but I took it upon myself to insist on blood tests being done. They came back positive for the HLA-B27 gene (which is associated with a higher risk of developing axSpA) and high inflammatory markers.” 

The diagnosis: finally, someone listens 

“I had to call at least five different private rheumatologists and beg to be seen before I had any success as they had all closed their waiting lists to new patients. I was told it could be two years to wait for a public outpatient appointment. When I finally saw the rheumatologist, I felt like it was the first medical person who believed me, which is appalling if you think about it. But at least I finally knew what we were dealing with and we could put a plan in place. 

“I started a biologic immediately and I had a fantastic response to it – the improvement in my symptoms was phenomenal. I was also relieved to hear that, despite the delays in my diagnosis, my condition hadn’t advanced hugely, although I had unfortunately lost the lordosis of my lumbar spine (meaning it is now straight instead of naturally curved) and was beginning to develop kyphosis (rounding) of my upper back. 

“But then that relief subsided, when it dawned on me that I was facing a chronic illness without a cure. Getting this type of diagnosis is not what anybody wants to hear at a relatively young age. I initially kept working as normal, but it started to become more difficult. I was just trying to get through the week and didn’t have the energy to socialise at the weekend or do anything I enjoyed. I was spending the weekends just trying to recover but I wasn’t really living anymore so I decided to take a step back from work.” 

“That night, when I had the diagnosis and I couldn’t sleep, I spent hours and hours on the Arthritis Ireland website and on their Facebook page. It was a huge comfort as, to be honest, when you get the diagnosis, you kind of feel left to your own devices. It’s so intimidating and you don’t know where to start.  

“In terms of the practical life things that nobody tells you, such as what you should eat and how to fit exercise in, or advice on finance - I got all that information from Arthritis Ireland. I enrolled on two of their courses. From the Behind the Pain course, I learnt that getting a diagnosis is really a grieving process. Everything changes and there’s nobody to walk you through that. There are lots of emotional hardships that come with living with physical pain and fatigue, and not just for you but your loved ones too.  

“One of the most rewarding things was being in a group with others who understood me. You don’t need to say anything; everybody just gets you. I credit that group with giving me the confidence to go back swimming. I had a mental block about it, but they supported me and now I’m back swimming three times a week in my local pool. It’s become a massive part of my life because the disease affects my Achilles tendons, so walking is often very painful, but I feel like a seal when I swim – I’m slow on land, but in the pool, I feel like there’s nothing wrong with me due to the buoyancy and support.” 

Finding my voice 

“I ultimately had to advocate for myself, and I still do. It’s a very vulnerable place to be, as a patient. And to have your concerns dismissed really knocks your confidence. So, now, I always make sure to get the reports from my rheumatologist visits now and I take it on myself to manage my own condition. But I really feel for other people who don’t know how to ask the right questions or advocate for themselves. A lot of people are intimidated or else implicitly trust what they’re being told.  

“That’s why I’d advise anyone with symptoms to bring someone with them to appointments to ask questions and take in the information. When you’re the patient, it can be very overwhelming and sometimes you miss what’s being said to you. Having a second person present can make a big difference to what's taken in, and even to know how you're treated by healthcare staff. Another thing is to reach out to Arthritis Ireland, by either going onto their website or ringing the helpline. 

“Once you’re diagnosed, it feels like you’re very much left on your own with it. You’re told to eat well and get exercise, but there’s no real guidance. Arthritis Ireland, on the other hand, gave me practical guidance and support as to what I could do to help myself. They answer all your questions. For instance, I was worried about how this condition would affect my ability to cope with potentially having a family one day, but didn’t know where to get that information. Then I saw they had a podcast about family planning. Everything you could possibly need is right there, and you really can’t get that information anywhere else.” 

A bright future 

“Although I’ve had to adjust my expectations for myself, in terms of working and buying a house and doing the ‘normal’ things that people in their thirties are doing, I’m now not so hard on myself. I’ve been through a lot and I’m proud to have got to where I am. If I can stay as well as I am, then I’m happy. I’ve done work on myself so that I no longer feel ashamed or guilty for things that I cannot control, and I no longer compare myself to others who don’t share the same challenges as me. 

“I’m currently studying Traditional Chinese medicine and acupuncture. The plan is to work with people who are in chronic pain. I had a life-changing response to acupuncture and if I could give a fraction of that to someone else, I’d be very proud. I hope to one day soon have my own practice and, that way, I can work around my condition and be flexible. The idea of working for myself is probably the best thing for me going forwards for both my physical health and wellbeing.   

“I’m doing very well overall these days – of course, some days are better than others. I still have pain and some stiffness, but it’s not all consuming or unmanageable like it used to be. And, even though I’m limited compared to the average person, I really feel like I’m living a full life. I’m putting everything into my studies and I’ll come out with something that is very fulfilling at the end. I’m very grateful for that. Things can only get better from here on out.” 

Being inspired by, and inspiring others 

“I want to share my story as not many people realise that young women can be affected by axSpA too. I was inspired by watching and reading about Amanda Geard's story on the Arthritis Ireland website. And also the story of former Kilkenny hurler Michael Fennelly -  my family have a background in GAA and I found that I could really relate to his experience of trying to get diagnosed. 

“My own experience should have been better than it was. My rheumatologist took one look at me and knew something was wrong. As I said, I truly feel that women get a different treatment to men in healthcare and that’s something I feel strongly about addressing. Women must fight and shout louder to be heard and taken seriously, and that needs to change. That is essentially why I wrote the essay and entered the Eular competition. If I could give someone else the courage to ask more questions, and not to be pushed over or dismissed, then I’d be very happy.” 

To read Emma’s winning essay for the EULAR Edgar Stene prize, click here  

If you are newly diagnosed, get reassurance and information that will support you right now by visiting the newly diagnosed section of our website. 

If you think you could benefit from one of the free, six-week Arthritis Ireland courses that Emma enrolled on, sign up here for our general self-management course or here for our course specifically about coping with pain.