Hope for the uncertainty of MS

MSer Phil Startin shares his thoughts on what can help with the unpredictability of MS

My name is Phil Startin, I am a former trustee of MS-UK, and I deliver the charity’s mindfulness courses.

As someone with lived experience of primary progressive multiple sclerosis (MS) for over 17 years and who has contact with lots of people with MS, both through teaching the mindfulness-based stress reduction (MBSR) course at MS-UK and as a facilitator on Overcoming MS retreats, something I’ve become increasingly aware of is how unpredictability really is at the heart of MS. With my close friends Rachael Hunter, a clinical phycologist, and Jonny White, all of us diagnosed with MS, I wrote up some thoughts around this and we’re delighted to have turned these into a poster at this year’s European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) conference in Copenhagen.

From my personal experience and speaking to so many others with MS, there’s unpredictability about the condition itself, perhaps how long a relapse will last and the extent of subsequent recovery, the drugs we’re on and whether they’ll work or not (or have bad side effects), and the long-term progression of the condition and how it’s going to impact us physically and mentally. And what then about the effects of all of this on our family, our relationships, our job, our interests, and even our identity? This applies to so many of us, regardless of when we were diagnosed and whatever loss of function we have.

The anxiety cycle

Modern lives are stressful enough and the complication is that this unpredictability can cause extra anxiety that can have a real effect on the condition and exacerbate our symptoms. It’s all too easy for that anxiety to increase allostatic load and push us into a state of chronic stress, causing the production of proinflammatory cytokines like cortisol. We can then fall into a vicious cycle through which stress and uncertainty precipitate and perpetuate disease activity. This then can lead to a real sense of loss of control and helplessness.

What I’ve found personally, I’ve seen in others, and we hope the poster shows, is that despite the unpredictability, through activities like mindfulness meditation we can promote symptom management and disrupt this cycle. By adopting anti Inflammatory self-management strategies, we can increase our sense of control and agency, reduce inflammation and learned helplessness, and improve our overall quality of life.

So I hope we bring a positive message to the ECTRIMS conference 2024 that we with MS can make a difference ourselves to our own health and wellbeing!

To find out more about mindfulness and the courses available at MS-UK, click here.