Multiple Sclerosis Symptoms In Your 20s: Why My Blackouts Were Dismissed By My GP

You know your body better than anyone – but what happens when no one listens? Welcome to Ms Diagnosed: a HuffPost UK series uncovering the reality of medical gaslighting. With new stats showing that 8 in 10 of women have felt unheard by medical professionals, we’re sharing the stories of seven whose lives were nearly lost to the gap between their symptoms and a system that refused to listen. As the UK introduces Jess’s Rule – a new mandate for GPs to ‘rethink’ after a third visit – we’re exploring why the medical system is still failing women and how we can start to fix it.

I was driving home from Nottingham Trent University to Leicester, where my family lived, when I suddenly experienced double vision.

I was on a high-speed road, and I was terrified. I knew I couldn’t drive like this. Somehow, I managed to pull over and I called my dad, asking him to come and get me.

That was one of the scariest things that had ever happened to me; I still shiver to think what could have happened. And the worst part is, there’s a chance it could have been avoided. I later learned that I had Multiple Sclerosis (MS) – but when I’d gone to my GP with another major MS symptom around nine months’ previously, she’d told me there was nothing wrong.

I first started experiencing MS symptoms around my early twenties; but I had no idea, then, what they meant. I remember my brother once commenting that I was veering to the side, even though I thought I was walking straight – but it’s only in hindsight I realise this was likely down to MS.

The first symptom that actually alarmed me happened in 2008, when I was 22. I was in my teacher training year at university, and one night I woke up in the early hours, on the floor by the bathroom in my student accommodation.

I had absolutely no idea what had happened. I’d gone to bed at around 9:00pm that night, because I was scheduled to teach the next day. I’d clearly passed out; but I didn’t know how or why. I had bruises on my knee, presumably from where I’d fallen – and I was scared. Nothing like this had ever happened to me before.

The next day, I went back to Leicester and my mum and I went straight to my GP. I was a confident 22-year-old; the only reason I took my mum with me was because I was worried I’d pass out again. But the GP acted as though I was a child.

After I’d explained what had happened the night before – and how out of character passing out like that was for me – the GP looked over my head at my mum, who was standing behind me. “There’s nothing to worry about here,” she said. “We’re not concerned.”

Then, she uttered the words I still can’t believe I heard. “You know, at university, the students drink a lot.”

“I can absolutely guarantee that’s not what happened here,” I said, perplexed.

“No,” said my mum, just as appalled. “She’s training to be a teacher. She was going to teach at 8:30am the next morning. She wouldn’t have been drinking alcohol.”

But the GP didn’t take it any further. She asked some very generic questions, but she didn’t take any blood tests or do any real follow-up. She just said, “There’s nothing wrong.”

As I left the GP’s office, I felt utterly dismissed, as well as upset. I knew myself, and I knew how seriously I was taking my teacher training year. I’d made a point of going to the GP, because I knew, deep down, something wasn’t right; but she’d played on every stereotype she knew and had passed up an opportunity to take me seriously.

But I couldn’t stay angry at her. “At the end of the day, I suppose I’m grateful she doesn’t think there’s anything wrong,” I eventually thought – and I got on with my life. That is, until I experienced double vision on a high-speed road nine months later.

After that driving incident, I knew there was something serious going on. I went to my optician, assuming it was an issue with my eyes. They ran tests, but couldn’t find any issues. Unlike the GP, though, they knew they couldn’t just leave things unanswered; so they sent me to an Ear, Nose and Throat Specialist.

At this point, life became a conveyor belt of referrals. I had an MRI, sight tests, colour vision tests – and I never, at any point, thought it could be MS. I thought I had a condition that would be treated, and that would then go away.

But I had other tests, too, focusing on strength and balance. Now, I realise those tests fit with suspicion of MS; but nobody mentioned this at the time, and I certainly had no idea.

I was eventually diagnosed in 2009, age 23. The neurologist spun his computer screen around, and all of a sudden he was talking me through a brain scan. He told me it was MS; but I had no idea what MS was. He was pointing at lesions, but the language and terminology he was using was so technical; I couldn’t follow anything.

I did hear the word ‘chronic’, though, and I knew what this meant. That I’d be on treatment ‘for life’; that I’d have this condition ‘for life’. That the symptoms I’d experienced so far – the passing out, the double vision – could be the tip of the iceberg.

“Will I still be able to teach?” I eventually asked him. I didn’t ask the second part of my question: ”…Or are you effectively telling me my life’s over?”.

He said I could continue teaching so long as adjustments were made; and I’m still teaching today. I’m also married, and a mother. My life certainly wasn’t over; but it has changed completely.

In those early days after my diagnosis, I felt completely lost – but I managed to find the MS Trust website, which was a source I trusted and which I found immensely helpful. I still work closely with the MS Trust today.

I’m still on treatment to repress my symptoms – which, these days, are something called ‘foot drop’, which affects my walking; fatigue; and word-finding.

Physically, I can’t do what I once could. It’s become the norm that I fall asleep at around 8:30pm; and I sometimes wonder how long I can continue teaching. I want to be an active mother, and I am – but my injections of medication are part and parcel of our family life.

Then again, this doesn’t bother my daughter in the slightest – she’s always happy to play ‘nurse’ and to bring me a tissue or cuddle if I need it. And, while it took me a long time to tell people about my diagnosis – I think because I didn’t want to be seen as ‘different’ – now, I’m very open about it. If I can help even one person get a correct diagnosis of their own, meaning they can get started with treatment, it’ll be worth it.

Because that’s the scariest thing about MS; it’s an invisible illness. If you don’t get it investigated, you won’t get a diagnosis. It’s not like a broken arm which is there for all to see. Once you get an MRI; well, then, it’s black and white. But you have to get the MRI in the first place, and that’s not always easy.

So my advice for anyone else in a similar position to the one I was once in – being told by their GP that they’re fine when they know they’re not – is that it pays to be pushy. You know you better than anyone else. People might dismiss what you’re saying; but it’s your life. Get a second opinion; be ‘pushy’ until you feel you’ve been listened to.

Because I don’t think there’s such a thing as being ‘too pushy’ when it comes to your health and wellbeing.

For more information and support on living with MS, visit www.mstrust.org.uk