University College London Hospital (UCL) approached me at my bi-annual visit to the Rheumatology Clinic to see if I would be happy to share how I successfully manage Sjogren’s Syndrome. And here it is … soon to be published on the UCL Rheumatology website.

My name is Siobhan and I have been living with the knowledge that I have Sjorgen’s Syndrome since diagnosis in 2004. However, looking back, it is clear to me that I have had it since my early teens.

What is it with autoimmunity in that it can so easily hijack not only our physical and mental health but also our identity and ultimately our lives? I am still answering that question for myself – still getting to grips with that hyper-vigilance that comes from a biological system whose needle has got stuck in a groove playing the same note over and over instead of a full concerto.

We all know that stress overload will wreak havoc with our systems driving us into pain, fatigue and overwhelm. We know that our conditions wax and wane like the moon or ebb and flow like the waves. It is difficult living in a state of constant anticipation not knowing what will meet us each waking day and if we have the wherewithal to meet that day.

Let’s be honest – auto-immunity takes its toll. It is physically and psychologically demanding – I would hazard a guess that we expend as much time and energy keeping our mental health stable as we do the physical. And we do all this while looking healthy on the surface – we are the invisible soldiers!

Through trial and error over many years, here are my top tips for managing physical and psychological health while still being able to live a good, long, and sustainable life; a life you will be happy to live. It works for me.

My top tips:

• Remember we are not our conditions. We are so much more. I remind myself of this frequently because it can be so easy to forget especially in flare up where all actions seem to be determined by the limitations of my condition. This can lead to living a less full life. We can still take risks to grow and develop – it might just take a little more time and planning.

• Don’t google your condition beyond the basics. Searching for that “cure” brings you down a rabbit hole and it can cost a lot of money and will likely lead to a sense of fear, anxiety, and hopelessness. I know because I did it!

• Relaxation: remember there are 2 types and both are equally important.
• Passive relaxation, which due to fatigue, most of us are probably more familiar with. I go for a 25 min rest every day, when it’s possible, around midday. As I find napping in the middle of the day difficult, I will listen to a guided bodyscan or a guided relaxation. It seems to not only relax my body but also lift my mood.
• Active relaxation; we mustn’t always let our mood dictate how much or how little we do. Obviously, if we are in severe pain, we must listen to our bodies. I have learned that I always feel better after a daily 20 min walk in nature. Even if you can’t go out to walk, there are lots of virtual guided walks on YouTube so that you can still feel many of the benefits.

• Yoga; I do Dru Yoga because it is gentle and flowing so it’s easier on the joints and muscles and has many modifications to make it suitable for everyone. I tend to it in the morning because no matter what my state of body and mind when I get out of bed, my physical energy and mood will have lifted by the end of my yoga practice.

• Take a break before you break. Pace yourself. I take micro-breaks throughout the day. When I am doing a considerable amount of digital work, I set my timer for 40 mins and take a break for 5-10 mins. During this time, I may bounce for a few minutes on my re-bounder, stretch or simply go make a coffee and breathe.

• Mindfulness: my secret power. I have found it to be the most powerful and useful tool for managing mental distress (anxiety, depression etc) and for physical discomfort (hypervigilance, pain etc). I do regular bodyscans to help release physical pain and tension in my body and regular mindful meditations to keep my mind less anxious, less fearful about the future and grounded in the present. Equally as important, I use a range of techniques to keep me mindful in my day.

I am mindful that we are all different and I would therefore encourage you to experiment with some or all of the above to find a rhythm to your day, week, life that works for you. You are the expert in the workings of your mind and body.

Contact me to learn more about Mindfulness and Yoga. I am an accredited Breathworks Mindfulness Teacher and a Dru Yoga Teacher. I’d be very happy to help.