I Knew Something Was Wrong: Twenty Years To Be Heard!

Many people live with symptoms they can’t explain.

Pain. Fatigue. Stiffness. Brain fog. Strange flare-ups that come and go without warning.

They visit doctors, undergo tests, and leave appointments with more questions than answers. They’re told it’s stress. Age. Hormones. Anxiety. Poor posture. Overwork. Sometimes they’re told nothing is wrong at all.

Yet deep down, they know something isn’t right.

For years, that was me.

Like many people living with an autoimmune disease, it took nearly twenty years for me to finally receive a diagnosis of Ankylosing Spondylitis (AS).

Twenty years.

Long enough to build a career, get married, move house several times, and apparently develop an encyclopedic knowledge of pain while remaining completely unaware of what was causing it.

What I’ve since learned is that autoimmune diseases can be masters of disguise. They rarely arrive with a flashing neon sign announcing themselves. Instead, they leave clues scattered across years—sometimes decades—waiting for someone to connect the dots.

Looking back now, the clues were there all along.

I just didn’t realise I was collecting them.

1994: The Warning Light

My journey began with what can only be described as a spectacularly dramatic entrance.

One morning, I woke up with excruciating pain in my right eye.

At the time, I was commuting to Woking for work. Driving was impossible because my eye was so sensitive to light that I had to keep it firmly shut. Instead, I endured a two-hour train journey, trying not to panic about losing my sight.

By the time I arrived at work, the pain was unbearable.

Thankfully, a colleague took one look at me and rushed me to the specialist eye department at St Peter’s Hospital in Chertsey.

The diagnosis was Iritis—an inflammation of the iris that causes severe pain, extreme light sensitivity and temporary vision loss.

What I didn’t know then was that Iritis is often more than an eye condition. It can be a warning light on the dashboard, signalling that something deeper may be going on elsewhere in the body.

I spent the next two weeks wearing an eye patch and taking steroid medication until it settled down.

Interestingly, the consultant also ordered an X-ray of my back and explained that Iritis was frequently associated with other underlying conditions.

Unfortunately, I never followed up on that clue. I felt better, the treatment had worked, I was busy.

Looking back, it was the medical equivalent of finding the first piece of a thousand-piece jigsaw puzzle and then putting it back in the box for the next twenty years.

The Iritis would return three more times over the following years—an unwelcome recurring guest that clearly hadn’t received the memo.

1998–2008: Learning to Live With Pain

By 1998, significant neck and back pain had entered the picture.

I was working in technology sales for banks—a world fuelled by targets, pressure and stress levels that could comfortably power a small city.

Naturally, I assumed the pain was part of the package.

Long hours. Constant travel. Endless deadlines.

It made sense.

Until it didn’t.

Because this wasn’t the occasional ache that follows a busy week. Some days the pain was debilitating. Yet, like many people with chronic illness, I adapted.

You learn to normalise things when they’re there every day.

You stop asking whether feeling awful is normal and start wondering why everyone else seems to cope better than you.

Fortunately, my husband Jamie qualified as a sports therapist in 2001. His deep-tissue massages became something of a lifeline.

While I blamed stress and poor posture, Jamie always suspected something inflammatory was going on.

The frustrating part was that every blood test appeared to suggest otherwise.

Time and again, I was tested for rheumatoid factors commonly associated with autoimmune disease.

Time and again, the results came back negative.

It’s remarkable how quickly a negative test result can make you doubt your own experience.

You begin questioning yourself.

Maybe it is stress.

Maybe you’re overreacting.

Maybe everyone feels like this.

Maybe this is just what getting older feels like.

The longer you go without answers, the easier it becomes to stop trusting your instincts.

2008: When Things Stopped Adding Up

By 2008, severe pain had developed in my wrists and elbows, leaving me struggling to use my arms.

I was referred to a rheumatologist who administered steroid injections and informed me that I was spending too much time at the gym.

Apparently, gripping things was the problem.

I was advised to stop exercises involving grip—which, as anyone who has ever stepped foot inside a gym will know, rules out approximately 98% of the equipment.

This was devastating.

Exercise wasn’t just about fitness.

It was my stress relief.

My mental reset button.

My sanity.

Then things somehow became worse.

The steroid injection crystallised in my joint, producing pain that made the original condition seem positively charming by comparison.

Needless to say, I did not book a follow-up appointment.

That same year, Raynaud’s Syndrome joined the party.

Another condition commonly linked to autoimmune disease, Raynaud’s causes blood vessels in the fingers and toes to constrict, leaving them cold, numb and alarmingly corpse-like.

Nothing says “I’m absolutely fine” quite like waving a white finger at someone in the middle of winter.

By now, the clues were multiplying.

The problem was that nobody seemed to be reading them.

The Turning Point

The breakthrough came completely unexpectedly.

One day, my knee swelled dramatically for no obvious reason.

For once, there was something doctors could actually see.

An X-ray and MRI led me back to rheumatology, this time under the care of a different specialist.

A fresh round of blood tests revealed that I carried the HLA-B27 gene, a genetic marker strongly associated with Ankylosing Spondylitis.

I later learned that around 90% of people with AS carry this gene.

Finally, it felt as though the puzzle pieces might be falling into place.

Except they weren’t.

Not yet.

Despite the positive result, no further scans or investigations followed.

And so the waiting continued.

Five more years.

Five years of symptoms.

Five years of questions.

Five years of wondering whether anyone would ever connect the dots.

January 2015: The Answer

Almost twenty years after my first major warning sign, I was finally diagnosed with Ankylosing Spondylitis.

By that point, I had Grade 4 fusion in both sacroiliac joints.

Oddly enough, I didn’t feel devastated.

I felt relieved.

Relieved that I wasn’t imagining it.

Relieved that there was finally an explanation.

Relieved that all those years of symptoms weren’t random events occurring in isolation.

The Iritis.

The neck pain.

The back pain.

The joint problems.

The fatigue.

The Raynaud’s.

The pieces finally fit.

For the first time in two decades, the story made sense.

Why I’m Sharing This

I’m sharing my story because I know there are people reading this who are where I once was. Autoimmune diseases can be invisible illnesses. It can take a long time before they show outward signs; patients suffer yet appear healthy, while internal damage progresses and symptoms gradually worsen.

People are sitting in waiting rooms.

People are staring at normal test results despite feeling anything but normal.

People are being told it’s stress, age, hormones, anxiety, overwork or bad luck.

People are beginning to doubt themselves.

If that’s you, I want you to hear this:

Trust yourself.

You know your body better than anyone else.

A normal test result doesn’t always mean nothing is wrong.

A lack of diagnosis doesn’t mean a lack of illness.

Keep asking questions.

Seek second opinions.

Be politely persistent.

Because sometimes the clues take years to assemble.

Mine took twenty.

Living with an autoimmune disease isn’t easy. There are frustrations, setbacks, medical mysteries and moments when laughter feels like the only sensible response – screaming into a pillow isn’t sustainable.

But there is also joy.

There is purpose.

There is life beyond the diagnosis.

Ankylosing Spondylitis is part of my story, but it doesn’t define who I am.

And whatever challenges you’re facing, they don’t have to define you either.

Sometimes the hardest part isn’t living with the illness.

It’s being heard.

And after twenty years, I finally was.

If you want to know more about autoimmune diseases, click here: Understanding The Autoimmune Disease Behind My Story

Until next time xxxx