I started experiencing symptoms that would later be diagnosed as axial SpA (AS) in my third year of university when I was training to become an osteopath. It was a scary and confusing time. During the final two years of my studies, I juggled my health problems, different treatments and my course. Throughout it all I was determined to learn from the experience to help my future patients and, little did I know, it would help shape my future work with NASS to help other people in the same position.
You know your body.
The first lesson I learnt? You know your body, so there is no better person to judge your health. While this may not be true at the start of your journey with axial SpA (AS), when it can be difficult to understand what’s going on, in time your knowledge of your body coupled with your healthcare team’s medical expertise will help you manage your axial SpA (AS) as best you can.
Managing a chronic health condition takes a lot of time.
This may seem obvious, but there are so many hidden things related to managing a long-term condition like axial SpA (AS). From keeping track of medical appointments, ordering medications and taking them as prescribed, to exercising daily to keep the pain and stiffness at bay. It really does affect all aspects of your life and takes so much time!
The effect on your mood and mental health cannot be understated.
Living with chronic pain can take a toll on your mood, but sometimes the way axial SpA (AS) affects your day-to-day activities can have an even bigger impact. Different people experience it in different ways, but for a stubborn person like myself I can struggle with my mood when my condition stops me doing things I want to do. It is really important to look after your emotional wellbeing to limit the impact it has.
You need a strong support network.
The people around you matter greatly and everyone finds support in different ways. Whether it’s family and friends, online groups or your local NASS Branch, having support is essential. I’ve met some of my best friends through axial SpA (AS) groups!
Medical appointments can be overwhelming.
Medical appointments can be overwhelming, particularly when you’ve recently received your diagnosis or you’re struggling to get your symptoms under control. Taking someone to your appointment (or sitting with you during a phone appointment) will give you added support and help take in all the information you discuss. Preparing a list of questions before the session is equally as important as writing down the key things discussed during. We’ve put together a guide to remote appointments and a handy worksheet to help you prepare.
I hope you’ve learnt some new things from my experiences. What have you learnt from having axial SpA (AS)?
Zoë Clark is our Self Management Programme Officer. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News.
Zoë is available on the Helpline, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.
The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk
