“I honestly thought my life was over – but living with MS has not been the experience I thought it would be”

I was lucky in the sense that my diagnosis came quite quickly, but it didn’t make it any easier to process. I was diagnosed in May, and it was only in February that I first noticed something wasn’t right. I was in an exercise class and had to stop because I had pins and needles in my feet. I thought it was just new trainers, but it kept happening. At the back of my mind, I thought it might be MS.

About a month later, I woke up, and I could hardly walk. I ended up in the hospital, and everything happened very quickly – lumbar puncture, MRIs, tests. Even being a nurse, it felt very, very frightening and overwhelming. Nobody told me to take a breath, stop and think. Nobody told me there was anything I could do to help myself, and I didn’t see a way of living well with MS. All I saw was the end – the wheelchair, not being the parent I wanted to be, not doing the work I wanted to do. I honestly thought my life was over and I was very, very scared.

Navigating the early days

In the early days, I was focused on physical recovery, getting back on my feet, getting moving again, getting back to work. But I had to change my job. Even though I could walk again, I was much slower, and I felt like a bit of a failure leaving the hospital environment.

There were also things I hadn’t expected. My social life changed. The new normal was me always slightly off balance. I remember going out with friends and being stopped at the door and told, “You’ve had too much to drink”. That’s embarrassing, and it makes you not want to go out. The stigma was really hard.

Even as a healthcare professional, I struggled with my own knowledge, understanding what was happening in my body and knowing what questions to ask at appointments.

A shift in perspective

I’d got about as much as I could from other charities, but it didn’t feel very positive. I started researching things that could help me live well with MS, and slowly but surely, I began to make changes, like switching to a Mediterranean diet, almost in an accidental way at first.

Then, around five years after my diagnosis, I found Overcoming MS. As a health professional, I was quite cynical at first. It actually took me a bit of soul-searching before I really started to take it on board. As part of my job, I teach people how to live well with long-term conditions, such as people with diabetes or even cancer. I gradually realised I needed to do this for myself. It was almost like I had to admit, actually, I do believe in this.

Another turning point for me was attending an Overcoming MS Retreat in 2025. The year before, I’d had an appointment with an old-school consultant who mentioned secondary progressive MS and said it might be time to “set your affairs straight.” That felt like the trauma of being diagnosed all over again.

The retreat came at exactly the right time, helped me advocate for myself more strongly and make decisions about my care. I changed consultants to a younger neurologist who understood Overcoming MS and took a more hopeful, forward-looking approach. I’m not saying my care on the NHS has been bad, but with my new neurologist, the difference in outlook and future planning has been night and day.

Making changes, step by step

I’m trying as best I can. Sleep and stress management are big things for me.

Over time, I’ve become more active, I’ve taken up yoga, which I’d never done before, and I’ve started changing how I eat, moving towards a more plant-based diet. But I have to admit I go through spells where I’m completely on it – food prepping, and I know I feel a lot better, but then life happens.

Stress management has probably been the hardest part. I can get frustrated with myself, and I let things get to me. But I’ve also found things that really help. I’ve been cold-water swimming for the last three years, and it gives me a real sense of energy. It brings a bit of zest and enthusiasm for life. I think everyone needs to experiment and find what works for them.

For me, medication and lifestyle go hand in hand. I wouldn’t come off my DMT, but diet and lifestyle are tools you use alongside it. Over time, I’ve taken more ownership over my medications. I ask more questions now, and I feel more confident in managing my health.

The power of community

Community has been massive for me, which is something I never relied on before. I used to keep everything to myself.

Now, when I actually say “I’m struggling,” people are there. The friends I go swimming with, and the people I met at the retreat – we have groups where you can just say, “I’ve had a bad day,” and people understand. You can’t really explain that kind of support, but it makes such a difference.

I never thought I would feel like this

In the early days after diagnosis, I remember meeting a neuro physiotherapist who was an MS specialist, and she said to me, “you’re going to find your life is going to get better.” I thought she was mad. I was actually quite annoyed with her.

But when I look back now, there are things I’ve done, that I would never have if I hadn’t been diagnosed. For example I went back to education and got the job I have now. My life now is much fuller. I feel more accomplished, more knowledgeable, less fearful and more hopeful.

I started to feel like myself again – albeit a newer, wobbly version. I’m not saying I would choose MS, but it’s not been the experience I thought it would be.

It’s going to be okay

I’m sharing my story because there is more than one way to live with MS.

If I could say one thing to someone newly diagnosed, it would be: it’s going to be okay.

I met a 16-year-old recently who had just been diagnosed, and she was so sad and didn’t know what to do. I don’t normally disclose my diagnosis in a work setting but I felt it was right to let her know and I also put her in touch with counselling support. I told her, life will change, but it would change anyway. And there are things you can do. I just thought that little bit of hope is so important.

MS: A diagnosis, not a destiny

Catherine shared her story to raise awareness of the role of lifestyle choices in managing MS.

If you want to know more about healthy lifestyle choices and what the evidence really says, take our quiz or read our report here. 

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