Today I delve into a unique form of abuse perpetrated against a unique group of people…those with invisible illnesses. The culprits are our respected and trusted medical professionals, to whom we turn at our most vulnerable.

A demonstrable link exists between long term abuse and the development of chronic, auto-immune and neurological illnesses. This is not because these diseases are psychosomatic, but because relentless abuse keeps us hypervigilant, stressed and anxious for years on end. This unremitting stress eventually collapses the immune system, allowing opportunistic viruses, bacteria, fungus and parasites to cause irreparable damage to multiple bodily systems.

Because these diseases are often invisible, with complex aetiology, disease patterns and prognosis, they are frequently dismissed by medical professionals as ‘all in our heads’, despite modern MRI, SPECT and other medical imaging that reveals clear biological damage. Brain lesions, cardiac disease, adrenal insufficiency and muscle abnormalities are but the tip of the iceberg. Despite this evidence, and because these invisible illnesses largely befall women, medical professionals conveniently put us in the too hard basket. We’re labelled hysterical women and offered no guidance or treatment, only disdain. In many cases, doctors are downright negligent and responsible for the rapid decline of far too many patients. Whatever happened to ‘first do no harm’?

For many seriously ill people, this medical mindset rubs off on family, friends, employers and government agencies, who label us lazy, neurotic, self-centred malingerers. Yet couch potatoes rarely contract invisible illnesses. Chronically sick people, once hardworking and committed, are left with no ability to perform basic daily functions, too sick to work and left to cope completely unsupported; living in poverty, sometimes homeless, going without food and basic necessities. They are largely friendless and forgotten, neglected and maligned by every facet of society.

This, my friends, is medical gaslighting. It is systemic abuse at its finest.

A snapshot of my own personal experience of medical gaslighting:

In 1994, while single parenting two young daughters, I began to experience excessively heavy and lengthy menstrual periods. I bled pretty much non-stop, with the occasional few days off per month. Even donning heavy flow, double-protection right before driving the kids to school, blood would be dripping into my boots by the time I arrived home. Doctor after doctor fobbed me off, occasionally prescribing me a different contraceptive pill. None made a difference. No doctor took my blood count, or thought to palpate my uterus.

Eventually, I stuck with a doctor who seemed like a ‘nice guy’ but even so, six months later, nothing had changed. I continued to decline under his care until a friend popped in one day, took one look at me and ordered, ‘Take your makeup off, get in the car! I’m taking you to the doctor and I’m not leaving until he’s booked you into the hospital.’ And so, I did.

The doctor spoke briefly to the hospital registrar. ‘She’s a bit anaemic. Her blood count’s probably around 10.’

In fact, it teetered around 6.4. I needed a massive and immediate blood transfusion with doctors hoping I wouldn’t fall into a coma. Fortunately, I didn’t, and weeks later I went under the surgeon’s knife to remove a huge uterine fibroid tumour. A nasty wound infection and reaction to antibiotics followed.

Before I recovered from surgery, I contracted the virus that caused my Myalgic Encephalomyelitis (ME). I firmly believe that, had I received timely medical treatment, my life would have followed a vastly different trajectory. You see, I never recovered, and am now a 28-year veteran of the disease.     

1995 though, was only the beginning of the medical gaslighting. After contracting ME, and desperately seeking answers, working part time and raising my girls unsupported, I was floundering. I needed time off work and went in search of an appropriate medical certificate. It was only when I left the surgery that I read it: ‘Melinda Jensen is suffering from Melinda Jensen.’

Back I went to show the doctor her her, ‘mistake’. She laughed. ‘I think it’s pretty accurate.’

Being disbelieved, shamed, and invalidated is soul crushing.

Another day, another doctor. This guy’s words both stunned and stung me. ‘You just need to make up your mind that this is it. This is as good as it gets. It’s a woman’s lot in life to suffer.’

Sick of hearing it yet? I was definitely sick of living it. But 2009 brought another opportunity to be treated like the village idiot. A vehicle accident landed me in hospital where I was examined by the duty doctor. I described my pain intensity…high!..and indicated where I believed my bones were broken. After a gruff examination, Dr Couldn’t-care-less refused an Xray, since I ‘clearly’ had no broken bones and was just suffering from a bit of bruising. (Oh, silly bloody me!) I begged to differ. He argued the toss. Thank God my oldest daughter arrived. Fixing him with her ‘don’t mess with me’ stare, she insisted.

He caved…angrily. ‘They won’t find anything!

He was wrong. The radiologist identified 6 broken ribs, a broken collar bone, punctured lung and torn rotator cuff. The doctor stormed off!

A couple of years and many doctors later I chanced upon a GP who seemed genuinely kind. I presented him with the current research and asked specifically for a SPECT scan and MRI of the brain. He hummed and hawed, gave me a goofy grin, and said the scans would find nothing. But he was willing to order them! A small win.

The results revealed significantly reduced blood flow on the brain SPECT (indicating brain pathology) and significant white matter lesions on the MRI (ie brain damage not unlike that seen in Multiple Sclerosis). My ‘kind’ doctor was surprised (I seem to surprise doctors quite a bit.) Then he hit me with, ‘Are you working yet?’

He concluded every appointment after that the same way, ‘Are you working yet?’

I’ve been too ill to work for decades now and am currently bed-bound for the best part of the day.

I’d like to say that was the end of the medical gaslighting…but not much has changed since 1995.

In the grand scheme of things, my story isn’t important, but it is illustrative. I’m one of millions of people who have invisible illnesses, including . We receive criminally negligent treatment from medical professionals the world over…an appalling abuse of trust perpetrated against some of the most vulnerable members of society by some of the most powerful.

For shame!

(For more information on Myalgic Encephalomyelitis (ME/CFS) please see https://www.nightingale.ca/)