My struggle to be diagnosed with Lady Gaga’s invisible illness

11 years ago, I started my fibromyalgia diagnosis journey.

11 years ago, I was 16 years old. I knew something was wrong with my body. But my doctors refused to believe me.

I can no longer count all of the times I was sent away and told that I was fine. All of the tests that showed nothing was causing my pain, so therefore I must not be in pain. All of the times I cried, thinking that I was so weak and pathetic complaining about something everyone else found normal.

But I remember the first time.

An invisible illness

Like Lady Gaga, I suffer from a chronic illness called fibromyalgia. Her daily pain has forced her to cancel tour dates, bringing this condition into the public eye again.

Like her, I look completely fine to the outside observer. You would never know from looking at me that I’m held together by a cocktail of medicines. You wouldn’t think that I can no longer work outside of my house, or that most days I barely leave my bedroom. You would never imagine there is an invisible illness which I battle constantly just to walk down the street.

I wouldn’t have imagined something like this either, until the day I realised I had it.

But let’s go back, to that first time a doctor told me I was fine. I had been experiencing odd sensations in my wrists for a while by then. At first, it had seemed like a lucky quirk. In my karate class, we were learning how to bend our opponent’s wrists to drop them to their knees. Like magic, everyone else in the class cried out and dropped like a stone, the pain too strong to handle.

When it was my turn, I just stared at my wrist, waiting to feel it. Was my opponent doing it wrong? No, the technique was fine; the sensei (coach) tried it next, and it still didn’t hurt me at all. Except for an odd sensation which I can only describe as knowing the bones were almost at breaking point, the unnatural position felt fine. It seemed I had some kind of natural defence system against any wrist moves.

But then there was the other side of it. My wrists were clicking, louder and louder, more and more often, when I moved them. As the clicks got louder, they also started to hurt more and more.

One day, I put my hand down on my bed to support me as I climbed in. The next thing I knew, my face hit the covers. My wrist had completely given way, and it was hurting badly.

I booked a doctor’s appointment.

The doctor seemed nice at first. He had a fatherly look, said “call me Desmond”, and was quick to warm laughter. He put me at ease with his concern, and asked me many questions. He pushed my wrist around to see which motions caused me pain.

Then the bombshell.

“Everyone’s wrists click. You’re fine.”

I stared at him for a moment. Was he right? Instinct told me to press the case. “But it hurts,” I stressed.

“Yes, it’s normal for it to hurt a little.”

“It hurts a lot,” I insisted. I was already feeling a lump rising up in my throat. If he was right, then I was just being weak. Worse — if he was right, I had to live with this.

He pursed his lips, thought for a bit, and said, “Alright. I’ll send you for an x-ray if it still hurts next month.”

Obediently, I came back after a month, and he booked an x-ray. He reminded me again that what I was experiencing was normal. I couldn’t have felt more like a stupid little 16-year-old if he had tried, but I knew the pain wasn’t right. So, he booked me in, despite his obvious reluctance.

Then, the results. He called me in the middle of an English lesson. I made my excuse to the teacher and stood in the corridor. I remember facing the row of lockers and looking out into the school courtyard.

“Your results came back clear,” he said over the phone. “There’s no problem that we can see with your wrists. No need to worry anymore — you’re fine.”

“But,” I started. I wanted to say, but if I’m fine, why does it still hurt?

There was no point in finishing the sentence. He had hung up on me.

Adulthood, and mistakes that can’t be rectified

I wish I could say I fought back and insisted that my complaints be heard. If I had, I might have reached a diagnosis back then. But I didn’t.

He was a doctor. I was a 16-year-old girl. I believed him.

Somewhere my mindset shifted from something is wrong with my body to something is wrong with me. As in, something is wrong with my head. As in, why couldn’t I handle things that were normal for everyone else?

My wrists weren’t the only thing. There were back pains (due to a fall when you were 6; never mind the doctor said you were fine back then too); recurrent daily migraines for 6 months (due to the change in your eyesight that happened a year ago); aching knees and ankles (you’re unfit); painful lockjaw (that just happens sometimes); and difficulty concentrating from time to time (you’re a daydreamer).

I ignored it all. I took my A-levels, and everything got worse. I went to uni, and everything got even worse. There were days when I would sit in the student bar with a bowl of pasta, eating it over the course of hours. My wrists weren’t strong enough to lift the fork to my mouth more than once every five minutes.

I graduated, and everything got worse. I took a job in an office, and everything got worse.

I didn’t know it at the time, but every time I put myself in a stressful situation I was making my symptoms irrevocably worse as a direct result. There are things I would have done very differently if a doctor had diagnosed me at 16.

But instead, there I was, working in an office, aged 24. I was so tired and weak I could barely make it through to Friday. I would wait for my boyfriend to drop me off, then run into the toilets before anyone knew I was there. I had to cry because I was in so much pain I couldn’t figure out how I would survive the day. I would cry when I got home because I knew I had to get up in the morning again.

Finally, things had to change. I had severe back spasms that had me off work for five days (and I had already used up all my sick days for the whole year). The pain was so intense that I lay still in bed and cried, wishing the prescribed painkillers didn’t make me sick.

That was when I met the doctor who was going to change everything.

The final revelation for diagnosis

It wasn’t even easy when I had someone on my side. This was the third doctor I had been to at this particular surgery alone. There were more, many more, who had ignored me and my symptoms, many who had even been rude.

It was the last one who did it. He was so rude and dismissive that it actually made me go beyond embarrassed and into angry. That was what gave me the push to stand up for myself.

The new doctor helped my back pain, and it went away at last. I felt like he was someone I could trust. Someone who had listened to me.

Then I had my lightbulb moment.

I had another severe case of lockjaw. My mouth wouldn’t open past the level just needed to fit a fork through. Chewing and talking were excruciating, and it lasted for days. I was lying awake with the pain, desperate to do anything to make it stop, when I Googled ‘causes of lockjaw’. Find the cause, I reasoned, find the solution.

There were the usual hypochondriac diagnoses I had seen every time I Googled any of my symptoms. Then there was one I hadn’t looked into before: fibromyalgia.

I opened the medical website from the search results and started reading.

General, widespread pain? Check.

Sensitivity to heat and cold? Check.

Tingling and shooting sensations in the arms? Check.

Exhaustion after physical exertion or stress? Check.

Muscle stiffness? Check.

Muscle spasms? Check.

Lockjaw? Check.

Brain fog and memory problems? Check.

Difficulty reading maps? Check.

Clumsiness? Check.

Migraines and headaches? Check.

Insomnia, restless leg syndrome, trouble waking up? Check.

Painful periods? Check.

The list went on, and on, and on. It felt like someone had written out a description of me. I saw so many things I had taken to doctors over the years, so many things I had ignored or thought normal. There were things on the list I couldn’t believe were symptoms. How did they know I had trouble with maps? Doesn’t everyone find it that hard to get up in the morning? Aren’t periods supposed to be so painful you can’t stand up during cramps?

Later, I would be amazed when a rheumatologist asked me out of the blue whether I got rashes on my lower legs in the cold. How did he know that? Later still, I would read posts in a Facebook group about eyesight getting worse. I’d had no idea that was a sign too. Even today, writing this article, I came across another symptom I had always thought was just a ‘me’ thing.

This was my breakthrough. I felt like crying — with relief. I wasn’t crazy. I wasn’t weak. I wasn’t pathetic. There was something wrong with me all along.

I wrote it all down, took it to my doctor, and waited for the diagnosis I now knew was mine.

Two years of testing

Of course, it wasn’t that easy. The problem with fibromyalgia is that there’s no test for it. Rather, you have to make sure you don’t have anything else first.

My diagnosis, even with a supportive doctor who believed me, took two years. Why so long? There were set-backs along the way that just seemed to keep coming. They included:

A vitamin D deficiency, which had to be redressed before further testing
A rheumatologist who asked me the same question five times and wrote down “yes” although my answer was “no”
Another rheumatologist who turned me away because “patients who think they have fibromyalgia don’t actually have it”
Exhaustion, which forced me to take a two-month break from appointments. I couldn’t handle being told I was an idiot anymore
Running out of sick days and holiday at work and being forced to forego appointments
Lost hospital appointment letters never getting to me until 3 months after I needed them
A backlog of cases which meant every test appointment had to be booked at least a month in advance
Doing all the same tests again because of the first two rheumatologists messing up my record

I’ve had blood tests, x-rays, CT scans, ultrasounds, physical examinations, and pressing tests. I’ve quit my job and set up a business from home, the only place I’m ever somewhere approaching comfortable. It took over two years.

But finally, at the end of it all, my new rheumatologist looked me in the eye and said, “You have fibromyalgia.”

It wasn’t the solution. It wasn’t the end — it was barely even the start. Having that answer still meant medication, side effects, a new lifestyle, and much more. But all that is for another time.

It was vindication.

It was me being able to tell the world, I’m not weaker than you — I’m stronger. I faced all of this and I still continued. I slogged on for years through the pain and the exhaustion. Now I know I can do anything. I can work harder, and endure longer, and achieve more than anyone else. I know I have power.

Like Lady Gaga, I’m living with an invisible illness. You can’t see it when you look at us. But secretly, on the inside, we’re superheroes.