"Being honest is the best thing I've done"
Susan, 43, from Grangemouth, was diagnosed with MS in 2023 after a series of misdiagnoses. For MS Awareness Week 2025, she writes about how having conversations about MS as a self-employed person have helped her.
When I was finally diagnosed with MS in 2023, I’d already been living with symptoms for years.
Getting a diagnosis was a long, hard process. I had been misdiagnosed with fibromyalgia (a chronic pain condition) after I started experiencing symptoms in 2016. But that didn’t feel right.
In 2022, I started having problems with my balance. I was diagnosed with labyrinthitis, an inner ear infection, over the phone. But the prescription I was given didn’t improve any of my symptoms. In fact, they got a lot worse: it felt like electric surges going through my head. My right leg would give way when I was in the middle of normal tasks, like going to the supermarket.
Eventually, I was able to see a doctor face-to-face. They referred me to the neurology department of the hospital, and I had a brain scan. Months later, they called me to a follow-up appointment. I went in, and they told me I had MS.
On top of that, I was also diagnosed with an incurable blood condition, which limits the MS treatments I can access.
Navigating change
While all this was happening, I was trying to build my own business.
When I turned 40, I realised that I wanted a change. I had been working a 9 to 5, Monday to Friday, and felt like I’d just been surviving. And I thought: there’s more to life than this. So I started Good Vibes Meditation. I do complementary therapies – things like cold water therapy, breathwork, meditation, and mindfulness.
It would have been six or eight months further before I was diagnosed with MS, but I had my second relapse a month after starting my business. Lots of people didn’t know what I was going through.
Deciding to tell people about my MS
When I first got diagnosed, I wasn’t planning on telling people. It was a big decision. I was worried I’d lose clients because people would think I couldn’t do my job anymore. But I thought: “I’m a real person, and I want to be real with people.”
People don’t really understand MS. Looking at me, you’d never know that I experience fatigue. A lot of the time, people don’t see the behind-the-scenes effort it takes to keep going. MS can be an invisible illness: what you see doesn’t always match what’s going on.
I decided the best thing I could do would be to start a conversation about MS.
Starting the conversation
I went with my gut. And I announced that I have MS during a live video stream on Facebook.
I had planned a Q and A, but before I began taking questions, I decided to speak a little bit about my life. I didn’t really prepare anything to say. I just thought, “I’m going to do this.” I’m not going to lie, I cried all the way through! But I’m so glad I did it.
I talked about my diagnosis and how the things I do in my business help me.
How it felt
The response blew me away. The support I got was amazing. People reached out, not just to say kind things but also to tell me their own stories.
I think people see that I’ve got MS while still running my business – and they see that it doesn’t define me. It took me a long time to feel ready, but as nervous as I was, telling my story has helped.
The conversations I’ve had with people about MS since telling everyone on Facebook Live haven’t just raised awareness – they’ve helped people relate to me.
I thought I was going to lose clients, but my connections with people have only been strengthened.
Even if me having a public conversation about MS helps just one person, it will have been worth it. Being honest is the best thing I’ve done.
