Lara’s story
Lara shares her story of living with axial spondyloarthritis. She now helps other people living with persistent pain to build coping skills
After decades of pain, Lara was diagnosed with axial SpA in 2010. Now she uses her personal experiences, together with her training to become a Life Coach, to help other people living with persistent pain.
Every single person living with axial SpA or persistent pain is having a completely unique journey in life. I’m here to share with you the tools and techniques I used when dealing with my anxiety, negative thoughts, pain and restricted movement. I have learnt that if you jump to behaviour without adjusting your thoughts and feelings, change is unlikely to be long-lasting. If any of my journey resonates with your own, then please feel free to reach out.
I’ve been in pain since I was 13, but I was given so many incorrect explanations over the years. I was told it was growing pains, that I was making it all up or hurting myself, that my endometriosis was causing my back pain. Through the pain, I carried on and tried to live my life as best I could, but ultimately the increasing pain and other symptoms had a massive impact.
Going to endless clinics and other patients pointing out that you’re too young to be there and suffering like this, it really does play on your mind. You start to think, “why me? What have I done to deserve this?”. You begin to analyse yourself, “am I a good person?”. I can remember telling myself that if I made sure I was the best person I could be, then maybe all this pain would stop. The fatigue would stop. I tried, but felt I’d failed, as it all persisted.
I doubted myself for a long time. Friends joked I had Munchausen’s syndrome. They laughed, I laughed. But inside, my mind was in turmoil, I was worried about my own sanity. I started to suffer with depression, fears for the future, and phobias. My chronic pain was controlling everything and making my world so small. Watching my friends going out having fun with so much energy just made me feel so sad. I literally slept my early 20s away.
I had constant internal chatter about how bad the future would be, about how bad the present was, and about how bad the past 10 or so years had been. Never a moment’s rest, not even in the middle of the night. This chronic pain all over my body was consuming me. My husband was amazingly supportive, but I was in a dark place. I was diagnosed with anxiety and OCD. But pain is hidden and to the outside world I looked okay and well. It was incredibly isolating.
Finally getting an answer
Now, pain is a funny thing, it makes you live your life on an emotional rollercoaster. One day you’re ready to give in, exhausted, drained, and just well and truly done, you curl up in the foetal position and just ignore the world. Then another day you wake up fighting, scratching, and gouging, and you are never going to let the pain win. You have your warrior pants on. Hope carries you forward to the next week, hoping that something can change.
I went to the GP again, even more desperate this time, and I was referred to another rheumatologist. The scans came back and I finally had an answer – axial spondyloarthritis. It was great to have a name for my condition, despite no one being able to pronounce it!
Although still in pain, medications helped ease my symptoms until 2015, when I was diagnosed with malignant melanoma and had to stop medication during treatment. I was back to square one, feeling on my own again. I had support from the NHS, family, and friends, but I felt so alone. My mind racing with negative thoughts, my chest pounding with negative emotions, and my entire body sweating with fear of the unknown future. The melanoma was treated, but the pain was worse than ever.
Breaking point
During the summer of 2016, I was suicidal. One day I decided I’d had enough and that I could no longer take anymore. That day, having spent time planning my end and all the finer details of my funeral, which I had put into a little box, I took a deep breath and closed the lid. As I glanced around the room, I caught sight of photos of the children, and I decided in that moment that I’ll open it again tomorrow and see how I feel.
It took a few weeks of opening it every day to view the reality of what life would be like if I was no longer around. Each day I closed the box and gave myself another 24 hours. A lot can change in 24 hours. It was in that dark moment when I realised that I may not be able to control what is happening to me, but I certainly can control how I handle it. I confessed to my mum about my plans, and she took the box to keep it safe. I’ve never asked for it and we have never spoken of it again.
Beginning a journey of self-discovery
From the age of 13 to my mid 30s I had allowed chronic pain to win. No more! I began a 5-year journey of self-discovery and new learnings. I spent time working alone with my thoughts and then used hypnotherapy to overcome my anxiety. My mind opened and I learnt a lot about myself. I’ve learnt how to break old habits that were held by my unconscious mind. I can now control my thoughts and my emotions, which in turn allow me to take positive empowering actions, so my pain level is much lower.
I trained to become a Life Coach and I now help people living with persistent pain to become positive, focused, confident, and most importantly in better control of their pain level. I offer gentle supportive mindset mentoring through Neuro Linguistic Programming (NLP), coaching conversations, and hypnosis. Mindfulness and meditation tools are also used to empower your self-management journey.
NLP is the study of the mind and nervous system, how we use our language, and understanding our thoughts, feelings and behaviours.
Coaching provides a non-judgemental, open, collaborative and confidential space – focusing on your thoughts, challenges, outcomes and goals, allowing you to achieve the goals you desire and deserve.
Hypnosis amplifies people’s abilities, such as courage, determination, resilience, focus, and even the capacity to reduce the subjective experience of pain. It’s a natural state of mind, like daydreaming, and you remain aware and in control at all times.
Mindfulness with breathwork allows you to think differently, breathe differently, and feel differently about life. We work together to overwrite old habits with positive empowering ones. Sometimes life before and after diagnosis can seem lonely and overwhelming.
“Enjoy the process and have a sense of adventure. Striving for 1%
better every day using small achievable steps is my advice.”
These don’t cure axial SpA, but all work together as a complementary therapy, working alongside conventional medicine and treatments. Change is a lifelong journey, so be patient and practise self-compassion. You have to step out of your comfort zone and for a while it will feel unnatural. You may want to scurry back, but if you resist this and keep stepping forward, you and your life can improve dramatically. Enjoy the process and have a sense of adventure. Striving for 1% better every day using small achievable steps is my advice.
A new mission in life
I feel blessed to be a mentor and Life Coach to others living with persistent pain. It means all my pain and suffering was not in vain. Knowing that my journey gives others hope and a reason to carry on, empowers me to continue doing what I’m doing.
It is my mission to support people pre and post diagnosis to feel less fear. Working with me can allow you to take back control and become part of a community who understands what it’s like living with a chronic condition.
If you have any questions or queries, or would like to book a free 45-minute discovery call, where you can tell me about your journey, please do not hesitate to contact me: Lara Wiseman, 07773044158, laralifecoach@gmail.com, www.laralifecoach.co.uk