Thirty-four years. For so long I had to go back and forth to different doctors, during which time my symptoms – which included painful ‘electrical currents’ shooting through my thighs, muscle weakness in my legs, hearing loss, constant fatigue and pain – were regularly downplayed or dismissed .
As time went on, I also developed crippling irritable bowel syndrome which got so bad that I didn’t want to go outside anymore. Yet it was repeatedly suggested that the real symptoms I was experiencing were related to anxiety, depression or, worse, I was imagining or exaggerating the problems.
“Responds well to reassurance,” my medical notes say, implying that all I needed was a reassuring pat on the back. In fact, when I was in my early 30s, a female doctor said, “Have you ever thought about just growing up?”
After first feeling unwell in my teens, it wasn’t until 2016, when I was 48, that I discovered, after experiencing this scenario over and over again, that my symptoms were all due to a progressive genetic condition that had been present since birth. would have been present. . By the time I discovered this, I had become so used to being told repeatedly that my “bad health” was all in my head that I started to wonder if maybe that was the case.
There’s a term for it: medical gaslighting, and it’s more common than you might think.
Constantly being dismissed because of your very real symptoms can have its own very real consequences.
Phillippa Lee started feeling unwell in her teens but was repeatedly told off by doctors
In 2014, as I sat before another specialist for the umpteenth time and explained my painful and embarrassing medical problems, I felt such fear of the disparaging comments that would soon come my way that I started sweating and had waves of nausea . flew over me. I even felt tears welling up.
Two years later, as I ran for a bus, my legs gave out, like I was wading through wet cement. I made an urgent appointment to see my GP, who referred me to a specialist neurological hospital where a young civil servant noticed my exaggerated reflexes (when lightly tapped on my knee my leg jumped), my trembling and the muscle tension in my legs.
Six months later, after a barrage of tests, I was finally diagnosed with hereditary spastic paraplegia (HSP), a rare form of motor neuron disease.
It is a genetic condition; a mutation in my DNA causes some of the nerves between my brain and spinal cord to die.
The nerve signals that move my limbs and keep my bladder and digestive system in order, as well as my hearing, become ‘distorted’, like a telephone connection that keeps dropping the line.
Symptoms include muscle stiffness and weakness, spasms, and problems with the bladder, bowels, and swallowing.
I left the hospital after receiving my diagnosis feeling shocked and scared, but I was relieved; this wasn’t just in my head.
I knew something was wrong in my teenage years, but when I became pregnant with my 21-year-old daughter, my lower back, neck, and legs started causing me significant pain, often bad enough to make me lose sleep.
After giving birth my complaints became worse. Every time I exercised, I would get severe muscle cramps, feel faint, or have flu-like symptoms. My work as a writer suffered as I was constantly exhausted and unable to concentrate due to chronic pain and brain fog.
My hearing was deteriorating even though I had not yet reached 30, leaving me feeling isolated and frustrated. When I was 28, I needed hearing aids. Yet I was fobbed off at every medical appointment.
In 2013, I was in Hawaii about to take a bucket list trip through the rainforest, and a photo of me in a bikini there showed that my left calf muscle looked shrunken compared to my well-toned right leg. This time my doctor seemed concerned and sent me for an MRI and a neurologist.
When I walked in, the neurologist sat imperiously behind his desk, while a medical student hovered in the back of the room.
The neurologist asked about my medical history – back pain (“unimportant,” he announced); neck pain (‘irrelevant’); my mother’s possible multiple sclerosis (only ‘possible’, since a diagnosis in the 1980s depended on a lumbar puncture, yet often an inconclusive examination – the neurologist raised his eyebrows about this); moderate deafness (he leaned forward like a predatory hawk – ‘You don’t seem very deaf’).
I showed him my hearing aids and continued. . . depression. . . ‘Ah!’ – he exchanged a knowing nod with the student. The MRI revealed ‘focal atrophy’ (loss) of the calf muscle, but the doctors had no explanation other than that I must have suffered a crush injury to my leg at some point.
I told the neurologist that this was not the case, but he stuck his pen on the desk and repeated that this must be the case. I left feeling like a fraud. I wish I had reported him, but I was afraid I wouldn’t be believed.
The diagnosis would come three years later, but even then I felt adrift and abandoned.
I left the hospital without any information leaflet or any insight into what might happen next, other than a follow-up appointment in a year.
I did what I’m not supposed to do and Googled my condition. It is incurable, degenerative and progressive; There is no way to know what my prognosis will be.
It was like a form of grief and I started going through the ‘five stages of grief’.
Moreover, the downplaying and dismissal did not stop at the diagnosis. Several years ago I saw another neurologist who, when he read my notes, said, “Hereditary spastic spinal cord injury? Apparently you’re not paralyzed!’ I responded by asking if he wanted me to change the name of the disease.
I wish the neurologist I saw in 2013 could see me now.
My walking and balance have become uncertain and I am at high risk of falling. I have chronic pain due to muscle cramps and nerve damage, as well as mild cognitive problems that affect concentration; my hands and arms are now affected; and I can choke easily due to difficulty swallowing.
I can only walk short distances safely; I rely on crutches and an electric wheelchair.
Treatment for HSP only involves managing the symptoms, as there is no cure. . . yet. But I have a great team of doctors now and I’m grateful for those who take me seriously.
I understand that it is frustrating for doctors to have seemingly ‘irrecoverable’ patients, and I doubt that the ‘gaslighting’ is always intentional, but something needs to be done about it.
I now lecture to medical students as a rare patient voice – hopefully things will change with a new generation of doctors.
Yet those previous experiences haunt me. I still get nervous before appointments, always expecting to be labeled as ‘fake’ when I am anything but.
Tomorrow on Mail+: how do you know if your doctor is cheating on you?