I’d always imagined that if I was told that I had a serious illness I’d feel shocked, scared and afraid. What I hadn’t expected was that I’d also feel relieved.
In 2001, I was spinning. I was about to turn 30 and had recently left a long, abusive relationship.
I had a new job, had just moved home and my stress levels were rocketing. It was no wonder that I felt ill.
It began with creeping fatigue that made my brain feel foggy, like I’d been day drinking and left me wanting to crawl into bed the moment I got back to my flat. I also felt queasy and dizzy at times.
Then the ghostly symptoms started. I had a strange sensation like someone invisible was gripping my left arm and foot along with a tickling feeling on my nose and tongue. It was like a hand running down my face.
Sometimes I’d jump because it felt like someone had thrown a tennis ball at my calf. I felt embarrassed describing this to anyone because it sounded so bizarre and like I needed an exorcism.
The GP referred me to a neurologist who sent me for a load of tests, suggesting that we needed to make sure this wasn’t multiple sclerosis,a chronic disease that affects the central nervous system.
I was a nurse and the only people I’d met who had MS had advanced disease and were restricted in their mobility, often unable to get out of bed and needing care to go about their daily lives.
For nearly 20 years, Chris Bridges (pictured) lived with bizarre, unexplained symptoms- numbness, fatigue, and sensations that felt like ghostly touches
The words ‘multiple sclerosis’ set off a reel of scary, negative images in my head and I felt totally panicked – but it was a huge relief when a letter came from the hospital saying that the MRI scan of my brain didn’t show any of the scarring that you’d expect to see in MS.
With time, the symptoms gradually resolved, but would come back if I was tired or under the weather.
I’d tell myself to relax and try to ignore it, putting it all down to stress. I didn’t know many nurses who weren’t under pressure – it came with the job.
Then in 2005, I woke up and staggered to the kitchen, noticing that I had almost no vision in my left eye.
The hospital doctor was abrupt and didn’t say much until he examined me.Then, he softened his tone and I guessed bad news was coming.
He told me that my eye showed inflammation that is seen in people with MS but we needed another MRI scan to confirm this. Suddenly, it felt like I was back in the horror movie once again.
On a subsequent appointment a more empathetic doctor took the time to reassure me and explained that MS is a complex spectrum illness that can present in many ways.
Because of where I worked, I’d only met people with MS who were having more extreme problems and needed hospitalisation.
Despite countless GP visits and MRIs, doctors told him it was either stress, anxiety, or all in his head
Even friends and family began to doubt him. Chris admits that he even started questioning himself
My vision came back after a couple of months and I tried to push the thoughts of what might be wrong with me to the back of my mind.
Bafflingly, the MRI came back negative and there was no explanation given of what caused me to go temporarily blind. I was relieved but puzzled.
It took another 14 years before there was confirmation that I actually had MS. I started a strange merry-go-round of health and illness where I’d become more stable, feel almost normal and then the same weird symptoms would start again along with a few new ones.
I ricocheted between neurologists, having a handful more MRI scans, saw my GP countless times and made a raft of excuses to myself about what was going on with me.
Wanting to lie down in the aisle of the supermarket because I was so overwhelmingly tired? Isn’t everyone exhausted these days?
Numb patches on my body?I was imagining them and was hysterical so they were best ignored.
Constant nausea? It was nerves – life is stressful after all.
I decided that maybe I was just a hypochondriac with a vivid imagination – it was an argument that held up for many, as people lost patience with me at times.
I’d cancel events because I needed to sleep (yet still woke up feeling exactly as tired), received strange looks if I mentioned any symptoms, and would pass off the occasional limp as ‘just a thing I’ve always done.’
It wasn’t until 2020 that a scan finally revealed the truth. Instead of fear, Chris felt overwhelming relief- finally, someone believed him
Now retired from nursing, he writes psychological thrillers inspired by his journey with invisible illness. Hislatest book Sick To Death came out on 27 March
My partner tried to understand but without a name for what was wrong with me it wasn’t easy. A family member even said to my face that they thought the illness was all ‘imaginary’.
The health professionals weren’t always much better. The neurologists would be interested in me when they examined me and heard my history – but as soon as the MRI scans showed no scarring they’d send a letter discharging me back to the care of the GP.
One doctor even laughed in my face once and said that he thought they needed to name ‘a special little syndrome’ after me. That one smarted.
I learned to keep quiet and fake wellness when I could.
In 2020, I noticed that my left foot was numb and over a few days the reduced sensation crept up to my rib cage.
At that point used to dismissing myself, I limped around for a week with a half numb left side, going to work in my job as a palliative care nurse specialist, passing it off as a sprain or back injury.
But when I finally went to A and E and was scanned they found the scarring in my brain and spine that they’d looked for over the past almost two decades.
The panic and fears for the future were the first emotions to rise to the surface -but I also realised that now I had a name for my illness, things might change.
People would maybe stop judging me, labelling me as a hypochondriac and showing lack of empathy.
It was a relief – and validating -to know that I had an illness with a name that people had heard of.
I’m now on treatment (a monthly injection that won’t change the existing scarring to my nervous system but is trying to prevent further damage) andhad to give up my job as a nurse after thirty years; due to the fatigue, numbness and chronic pain.
My specialist doctor thinks that it’s likely that I had MS from the first attack nineteen years before but that the scars were small and because the scans were always done as non-urgent, months after the attacks, the swelling had gone down making them harder to see.
I decided to channel my experience into something bigger, choosing to turn to something I’d always enjoyed – writing.
As a fan of crime fiction specifically, it occurred to me to upend theclassic psychological thriller story by creating a character with a neurological illness – who is driven to contemplating a crime.
Like me, my main character is often disbelieved, devalued and tries to hide her illness.
I’ve been staggered and heartened by the positive response the book has had from readers with chronic illnesses.
I always joke that despite our symptoms, we can still participate in life on better days – and even commit ghastly crimes if we want to – but I’m not planning on this myself of course, nor advocating it for others.
The diagnosis has also led to another new facet of my life – community.
The other day, a friend who has a post-viral fatigue syndrome mentioned how much they were struggling with the hot weather. Heat often flares up chronic illness and I replied that my MS symptoms had too surfaced with the sunnier skies.
She responded by devaluing herself and saying that MS is, of course, in a different league. I disagreed.Illness is illness, whether it has a name or not and suffering can be equal.
There’s no hierarchy just because of an illness name. Lots of people have a thing called functional neurological disorder where they have disabling symptoms that present like MS, epilepsy or Parkinson’s disease yet never have any organic evidence of illness.
It’s not a choice, nor hypochondria nor hysteria. It’s a recognised illness that should be treated with kindness.
I don’t feel bitter that it took so long to have a diagnosis and it wouldn’t have changed the treatment I’d have had at the time.Treatments for MS have advanced considerably and continue to do so.
However, what I do wish is that someone had taken the time to explain what might be wrong and that I hadn’t felt so judged and alone.
Maybe if I’d known I had MS for all that time I’d have worried more but equally, I’d have felt less like I was going mad.
As it is, I’m managing to live with the ghosts with their strange grip on my limbs and their tennis ball throwing.
I’m writing crime thrillers when I can do it around the crippling fatigue and trying to life the best life I can.
Chris Bridge’s latest book Sick To Death came out on 27 March.
