Thirty-four years. That was the time I spent going back and forth to see various doctors, during which time my symptoms (including agonizing “electric currents” running through my thighs, muscle weakness in my legs, hearing loss, constant fatigue and pain) were regularly trivialized or dismissed.
As time went on, I also developed crippling irritable bowel syndrome that became so severe that I didn’t want to go out. But she still repeatedly implied that the real symptoms she was experiencing were due to anxiety, depression, or, worse yet, that she was imagining or exaggerating the problems.
“He responds well to reassurance,” he says in my medical notes, implying that all he needed was a comforting pat on the head. When I was in my early 30s, a doctor even said to me, “Have you ever considered just growing up?”
After first feeling unwell in my teens, it wasn’t until 2016, when I was 48, after having gone through this scenario over and over again, that I discovered that all my symptoms were due to a progressive genetic condition that would have been present from birth. . When I discovered this, I was getting so used to being told repeatedly that my “poor health” was in my head, that I began to wonder if that might be the case.
There is a term for this (medical gaslighting) and it is more common than you think.
Constantly being dismissed for your very real symptoms can have its own very real effects.
Phillippa Lee started feeling unwell in her teens, but was repeatedly misled by doctors
In 2014, as I sat in front of another specialist and told him about my painful and embarrassing medical problems for the umpteenth time, I felt such a sense of dread at the disparaging comments that might soon come my way that I began to sweat and experience waves of nausea. invaded me I even felt tears welling up.
Two years later, as I was running toward the bus, my legs gave out, as if I were walking on wet cement. I made an urgent appointment with my GP, who referred me to a specialist neurology hospital, where a young registrar noticed my exaggerated reflexes (when my knee was tapped, my leg would jump), my tremors and muscle tension in my legs. .
Six months later, after a series of tests, I was finally told I had 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 becoming “confused,” like a telephone connection where the line keeps dropping.
Symptoms include muscle stiffness and weakness, spasms, and problems with the bladder, bowel, and swallowing.
I left the hospital after receiving my diagnosis feeling shocked and scared, but I was relieved: this wasn’t all in my head.
I knew something was wrong as a teenager, but it was when I became pregnant with my daughter at age 21 that my lower back, neck, and legs began to cause me significant pain, often severe enough to prevent me from sleeping.
After giving birth my symptoms worsened. Every time I exercised I would have severe muscle cramps, faint, or have flu-like symptoms. My work as a writer was suffering as I was constantly exhausted and unable to concentrate due to chronic pain and “brain fog.”
My hearing was improving, even though I was not yet 30, which left me isolated and frustrated. At the age of 28, he needed hearing aids. But they still deceived me at every doctor’s appointment.
In 2013, I was in Hawaii about to go on a rainforest hike, and a photo of me in a bikini showed that my left calf muscle seemed shrunken compared to my well-toned right leg. This time my GP seemed concerned and sent me for an MRI and to see a neurologist.
When I entered, the neurologist was sitting imperiously behind his desk, and a medical student hovered at the back of the room.
The neurologist asked me my medical history: back pain (“Immaterial,” he announced); neck pain (‘irrelevant’); my mother’s possible multiple sclerosis (only “possible” since the diagnosis in the 1980s was based on a lumbar puncture, which was often an inconclusive test anyway; the neurologist raised an eyebrow at this); moderate deafness (he leaned forward like a predatory hawk: “You don’t look very deaf.”)
I showed him my headphones and continued. . . depression . . . ‘Ah!’ —exchanged a gesture of complicity with the student. The MRI revealed “focal atrophy” (loss) of the calf muscle, but the doctors had no explanation for it except that I must have had a crush injury to my leg at some point.
I told the neurologist no, but he tapped his pen on the desk and repeated that I should have done it. I left feeling like a fraud. I wish I had reported it, but she was nervous that they wouldn’t believe me.
Three years later the diagnosis would come, but even then I felt adrift and abandoned.
I left the hospital without any informational brochures or any idea of what might come next, beyond a follow-up appointment in a year.
I did what you shouldn’t 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 grieving and I began to go through the “five stages of grief.”
What’s more, the trivialization and contempt did not end with the diagnosis. Several years ago, I visited another neurologist who, upon reading my notes, said, ‘Hereditary spastic paraplegia? You are obviously not a paraplegic! I responded by asking if he would like me to change the name of the disease.
I wish the neurologist I saw in 2013 could see me now.
My gait and balance have become precarious and I am at high risk of falls. I have chronic pain due to muscle spasms and nerve damage, as well as mild cognitive problems that affect concentration; my hands and arms are now impacted; and I can choke easily due to difficulty swallowing.
I can only safely walk short distances; I have crutches and an electric wheelchair.
Treatment for HSP only involves controlling symptoms, as there is no cure. . . still. But now I have an amazing team of doctors and I’m grateful for those who take me seriously.
I understand that it is frustrating for doctors to have seemingly “unfixable” patients, and I doubt that “gaslighting” is always deliberate, but it needs to be addressed.
I now give talks to medical students as a rare patient voice; I hope things change with a new generation of doctors.
However, those previous experiences haunt me. I still get nervous before dates, always expecting to be labeled “fake” when I’m not.