The GP looked over his glasses, smirked, and then started to laugh.
‘We may need to name a special little syndrome for you,’ he said.
It was 2010 and I was once again trying to get someone to pay attention to my symptoms.
By this point, I’d spent years trying to convince myself that the feeling that no one believed me was paranoia. Yet I still went home, laughter ringing in my ears, and internalised it.
Obviously this was my fault. I was hysterical, a hypochondriac, a time waster. But I knew my symptoms were real.
It started in 2001. I was 30, freshly liberated from a relationship and had started a new job. Frankly, I was exhausted.
That’s no exaggeration, I felt hammered by fatigue and was living on caffeine and adrenaline, constantly collapsing on the sofa once home from work. And then the ghostly symptoms started.
Weird from the outset, even supernatural at times, it felt like someone was grabbing my left wrist and ankle. Sometimes I had numb patches, the feeling of a feather tickling my face, or ants on my skin. I limped sometimes but not others.
I felt ridiculous saying it out loud. It was like I needed an exorcist rather than a doctor.
Still, I was dispatched to a neurologist who conducted a raft of tests, sending me for an MRI scan of my head. He then suggested that this could be multiple sclerosis (MS) – a chronic disease that affects the central nervous system – which sent my stomach lurching.
As a hospital-based nurse, my experience of MS was seeing patients who had an advanced version of the disease. Normally they were confined to beds or wheelchairs – I didn’t understand then that the disease can present in many different ways.
However, an MRI (which is typically used to see if there is damage to the nerves in your brain or spinal cord), came back clear and I was discharged with no suggestions about what might be happening.
I self-diagnosed a stress reaction, which made sense. But the symptoms persisted on and off for months, in fact, years.
For the next 19 years my health waxed and waned. I had a merry-go-round of seeing GPs, neurologists, being scanned repeatedly and always told that there was nothing wrong with me.
Sometimes, if I saw someone new, doctors looked at me like I was being ridiculous when I told them my symptoms. Or, like on that one occasion in 2010, I was actually laughed out of the GP surgery.
One time, I went temporarily blind in my left eye and was told it was likely to be MS. But I was once again dismissed when the brain scan was clear.
Even after I received a clinic letter saying that the consultant was ‘utterly convinced’ that I had MS, a further brain scan led to the same punchline.
I felt isolated and frustrated, as did my partner.
While he was as patient and supportive as he could be, he didn’t understand why I was having these symptoms – always tired, always cancelling things – and neither did I.
A family member once suggested that the obvious answer was that it was ‘all in my head’. Funnily enough, in a way, they were right.
In 2020 I had a relapse – where new symptoms arrive or old ones get worse – that was so catastrophic it left me with a numb left side, limping, falling asleep in unexpected places and feeling constantly queasy until eventually I landed in casualty.
Another MRI scan (I’d lost count of the number I’d had by then) was ordered, only this time, it showed that my brain was peppered with scarring where MS had damaged my brain and spine.
In all likelihood, I’d had MS this whole time but the scarring before this major attack had always been minor and therefore didn’t show up on tests. Now though, the damage was pronounced and dramatic making it impossible to miss.
Finally I had the diagnosis I’d been searching for, for 19 years.
You’d think, after all that time I’d be ready for it. Yet, in spite of the multiple times I’d been told I might have MS, it came as a huge shock and left me feeling unmoored and afraid for the future.
Oddly, I also felt relieved and validated. Everything made sense.
I saw a psychologist to help me adjust, a specialist nurse to talk through treatments, and a dedicated MS consultant. They were all empathetic about the delay to diagnosis and offered me help to find ways to stay in work.
With their recognition and support, I carried on working as a palliative care specialist nurse for another three years – though I did eventually have to retire on health grounds due to severe fatigue (a common MS symptom).
Sadly, as I well knew, there is no cure for MS. But I’m now on monthly injections to try to stop it damaging my nervous system further. Even then though, I still have constant nerve pain, chronic fatigue, and areas of numbness.
My life has irrevocably changed since the diagnosis. Where I used to go to the theatre twice a week or spend hours walking my dog around London, I now spend much more time at home. Luckily, I’ve found pleasure in reading and watching films.
On the days when my symptoms are less, I embrace them wholeheartedly, making the most of that time to do things I otherwise can’t now. As a result, we are planning on swapping the hectic whirl of the capital for a slower pace of life on the South Coast.
Mainly, I wish there hadn’t been 19 years of the merry go round of ‘does he/doesn’t he’ have MS.
Having a diagnosis wouldn’t have changed what medical treatment I had because the MS wasn’t bad enough then to need medication, but it would have helped me feel validated.
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Chris Bridge’s latest book ‘Sick To Death’ is out on 27 March. Pre-order your copy here.
Maybe then I wouldn’t have spent almost two decades feeling like I was being dismissed and labelled as being hysterical or making it all up. Perhaps I wouldn’t have been left to cope alone each time the MRI scans were clear.
Whether the scans were or weren’t showing MS, I was struggling and deserved support and understanding.
I know my story is not the only one like this: many people frequently have neurological symptoms without a diagnosis and are often dismissed.
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But people with functional symptoms (symptoms with no obvious physical cause) need and deserve as much help as anyone else – we just don’t always get it. I’d like to see that change.
In the meantime, I’ve channelled my anger and frustration into writing.
I’ve always written and am a crime fiction fan so decided to write about a woman with neurological issues and the chaos that ensues when she’s drawn into a murder plot. This lead character is discredited, disrespected and coping alone. Sound familiar?
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Mainly, the catharsis from expressing my feeling of alienation, fear and rage on the page has been intense, but finally my ‘special little syndrome’ has found a home on paper and I feel seen.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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