Thirty-four years. That’s how long I spent going back and forth to see various doctors, during which time my symptoms — including agonising ‘electric currents’ that shot through my thighs, muscle weakness in my legs, hearing loss, constant fatigue and pain — were regularly trivialised or dismissed.
As time went by I also developed crippling irritable bowel syndrome that became so bad I didn’t want to go out. But still it was repeatedly implied that the real symptoms I experienced were down to anxiety, depression or, worse, I was imagining or exaggerating the problems.
‘Responds well to reassurance,’ it says in my medical notes, implying that all I needed was a comforting pat on the head. When I was in my early 30s, one female doctor even said, ‘Have you ever considered just growing up?’.
Having first felt unwell in my teens, it wasn’t until 2016, when I was 48, having gone through this scenario time and time again, that I discovered my symptoms were all due to a progressive genetic condition that would have been present since birth. By the time I found this out I was getting so used to being repeatedly told that my ‘ill health’ was all in my head that I was starting to question whether that might be the case.
There’s a term for this — medical gaslighting — and it’s more common than you might think.
Being constantly dismissed for your very real symptoms can have its own very real effects.
Phillippa Lee started feeling unwell in her teens – but was repeatedly fobbed off by doctors
In 2014, as I sat in front of yet another specialist and recounted my painful and embarrassing medical problems for the umpteenth time, I felt such a sense of dread about the belittling comments that might soon come my way that I started sweating and waves of nausea swept over me. I even felt tears building up.
Two years later, as I ran for a bus, my legs failed me, 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 registrar noted my exaggerated reflexes (when my knee was lightly tapped my leg jumped), my shaking and the muscle tightness in my legs.
Six months later, following a barrage of tests, I was finally told that I have hereditary spastic paraplegia (HSP), a rare form of motor neurone disease.
It is a genetic disorder; 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, are getting ‘scrambled’, like a phone connection where the line keeps breaking up.
The symptoms include muscle stiffness and weakness, spasms, and problems with the bladder, bowel and swallowing.
I left the hospital after receiving my diagnosis feeling shaken and scared, but I was relieved — this was not all in my head.
I knew something was not right in my teens, but it was when I became pregnant with my daughter aged 21 that my lower back, neck and legs started causing me significant pain, often bad enough to stop me sleeping.
After I gave birth my symptoms got worse. Every time I exercised I would get severe muscle cramps, feel faint or have flu-like symptoms. My work as a writer was suffering, as I was constantly exhausted and couldn’t concentrate due to chronic pain and ‘brain fog’.
My hearing was going, even though I hadn’t hit 30, which left me feeling isolated and frustrated. By the age of 28, I needed hearing aids. But still I was fobbed off at each medical appointment.
In 2013, I was in Hawaii about to do a bucket-list trek through the rainforest, and a photo of me in a bikini there showed that my left calf muscle looked shrunken compared with my well-toned right leg. This time my GP seemed concerned and sent me for an MRI and to see a neurologist.
When I walked in, the neurologist was sat imperiously behind his desk, a medical student hovering at the back of the room.
The neurologist asked for my medical history — back pain (‘Immaterial,’ he announced); neck pain (‘irrelevant’); my mum’s possible multiple sclerosis (only ‘possible’, as a diagnosis back in the 1980s relied on a lumbar puncture, often an inconclusive test anyway — the neurologist arched his eyebrow at this); moderate deafness (he leaned forward like a predatory hawk — ‘You don’t seem very deaf’).
I showed him my hearing aids and carried on . . . depression . . . ‘Ah!’ — he exchanged a knowing nod with the student. The MRI revealed ‘focal atrophy’ (wasting) of the calf muscle, but the medics had no explanation for it, except that I must have had a crush injury of the leg at some point.
I told the neurologist that I hadn’t, but he stabbed the desk with his pen and repeated that I must have. I left feeling like a fraud. I wish I’d reported him, but I was nervous I wouldn’t be believed.
Three years later would come the diagnosis — but even then, I felt cut adrift and abandoned.
I left hospital with no information leaflet or any insight into what might come next, beyond a follow-up appointment in a year.
I did what you aren’t meant 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 bereavement, and I began to go through the ‘five stages of grief’.
What’s more, the trivialisation and dismissal didn’t stop with the diagnosis. Several years ago, I saw a different neurologist who, on reading my notes, said, ‘Hereditary spastic paraplegia? You evidently aren’t paraplegic!’ I responded by asking if he’d like me to have the name of the disease changed.
I wish the neurologist I saw in 2013 could see me now.
My walking and balance have become precarious and I have a high risk of falls. I have chronic pain due to muscle spasms and nerve damage, as well as mild cognitive problems affecting concentration; my hands and arms are now impacted; and I can choke easily due to trouble swallowing.
I can only walk safely for short distances — I rely on crutches and a powered wheelchair.
The treatment for HSP only involves management of the symptoms, as there is no cure . . . yet. But I now have an incredible team of clinicians and I’m grateful for those who take me seriously.
I understand that it’s frustrating for doctors to have seemingly ‘unfixable’ patients, and I doubt that the ‘gaslighting’ is always deliberate, but it needs addressing.
I now give talks 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, forever expecting to be called out as a ‘fake’ when I’m anything but.
Tomorrow on Mail+: How to tell if your doctor is gaslighting you
