Hayley’s story

My diagnosis  

I was diagnosed with MS in late 2019, although in some ways the journey started years earlier. After having my second child, I developed bladder and bowel symptoms that gradually became impossible to ignore. For a long time, I thought it was all related to childbirth. I became incredibly skilled at locating accessible toilets, “secret wee” locations and emergency escape routes. Not exactly a life skill I had planned on developing.  

I spent two years working with specialists to investigate my symptoms. The real surprise came when my urogynecologist sent me for an MRI before a procedure. A few weeks later, a letter arrived saying there were white lesions on my brain and spine. That evening I cooked dinner, put everyone to bed, then sat up at 2am Googling “white lesions”. Eventually I woke my husband and said, “I think I’ve got MS.”.  

My dad has lived with MS for over 40 years, so I knew enough to be frightened. I felt uncertain about the future and spent a long time in denial after my diagnosis. For a while I told only a handful of close friends and kept it from much of my family. It felt like “my MS” belonged to me, and I needed time to process it before I could share it with anyone else.  

What helped me  

I heard about Overcoming MS before I was diagnosed. When I received my diagnosis, I ordered the Overcoming MS book. Then, in a display of absolute commitment, I threw the unopened book to the back of my wardrobe and left it there for several years.  

A friend told me about someone she knew with MS who had experienced benefits from changing her diet. Coincidentally, I just started listening to the “Living Well with MS” podcast. Slowly, I became more curious and open-minded about lifestyle changes.  

What struck me about Overcoming MS was that it offered something I desperately needed: hope, community and practical things I could do. I found my local Circle, met some wonderful people and attended a Retreat. Sitting in a room full of people who understood, without me having to explain myself, was incredibly powerful. For the first time, I felt completely at home.  

What changed  

The biggest change has probably been my mindset. Early on, I spent a lot of energy trying to ignore my diagnosis. Now I focus on understanding it, living with it and making choices that support my health.  

I gradually changed the way I eat, started taking vitamin D and became more intentional about looking after myself physically and mentally. Overcoming MS has been a huge part of that journey; they gave me the right tools, but just as importantly they connected me with people who genuinely understand.  

Another significant change has been learning to talk openly about my MS. After experiencing anxiety, panic attacks and emotional exhaustion, I realised that carrying everything on my own wasn’t working. I told my family, my children and eventually my colleagues. The response was overwhelmingly supportive. What I expected to be frightening became incredibly freeing.  

What still isn’t easy  

MS still brings challenges. Fatigue is one of the hardest symptoms for me. It’s often described as having flu, jet lag and a hangover all at the same time, and honestly that’s about right. I can walk a short distance or stand for a while and suddenly feel completely drained.  

I also live with symptoms that many people don’t see. Bladder and bowel issues can be difficult to talk about and sometimes carry more stigma than other symptoms. Even now, I still think about where the nearest toilet is when I go somewhere new.   

What helps is support, honesty and humour. My husband has been amazing throughout everything, and I’ve learned that talking openly often encourages other people to share their own struggles too. Life feels much lighter when things are no longer secret.  

Life today  

Today, my life is full. I work in education, create artwork, support students, spend time with my family and continue learning how to live well with MS. MS is certainly part of my life, but it isn’t all of it.  

My art has become a way of expressing experiences that are often invisible. Through my work, I explore the reality of living with hidden symptoms and the tension between vulnerability and resilience. I want to make the invisible visible.  

What brings me hope is connection. Whether it’s family, friends, colleagues, my Overcoming MS Circle or the friends I made on retreat, I know there are people who understand. More than anything, I’ve learned to focus on the things I can do rather than the things I can’t. My journey is still unfolding, but I’m excited to be on it and curious about where it will lead.  

Nobody told me… that I didn’t have to carry it all on my own  

When I was diagnosed with MS, I thought being strong meant keeping everything to myself. I spent years trying to cope quietly, telling very few people and convincing myself I could just get on with it. Eventually, I learned that asking for help is not weakness, it’s wisdom.  

The biggest turning point in my journey wasn’t a treatment or a test. It was opening up. Telling my family, my friends and my colleagues lifted a weight I didn’t even realise I was carrying. It allowed people to support me, and surprisingly, it encouraged others to have conversations about their own challenges too.  

That matters because MS can feel incredibly lonely, especially when many of your symptoms are invisible. The more we talk about it, the less alone we feel. And sometimes a good conversation, a supportive community and a healthy sense of humour can get you through some very dark days