Health Opinion

Antidepressant overkill: One woman's nightmare

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(Image by Polina Tankilevitch | Pexels)

Avid overprescribing of SSRIs only further clouded Mary Jane Crowley's medical misery, delaying her eventual diagnosis of Ehlers-Danlos syndrome (EDS).

ON MY DECADES-LONG journey to a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS), one aspect has been particularly disturbing: since 1997, when I sought help after years of chronic joint pain and supposedly unrelated symptoms most doctors automatically assumed that I needed (Selective serotonin reuptake inhibitor) SSRI antidepressants.

I respect experts, so I took them initially, but they actually made many symptoms worse and I tapered off them on my own — in my experience, discussion on deprescribing never happens. Once on anti-depressants, it quickly became, "Case closed... why are you still asking questions?"

I was fobbed off for decades by doctors even when my symptoms escalated excruciatingly. This only led to further dismissal.

The pathologising of medical issues and the medicalising of misery, which my distinct physical symptoms were perceived to be, seem a convenient segue in a profession that, more often than not, seems to run on a business model. And a business run with very tight margins.

Australia is among the highest prescribers of SSRI anti-depressants in the world. A recent BBC documentary points out that there is no long-term study on the effects of antidepressants — we are the long-term study.

Deprescribing guidelines in Australia for SSRIs have only recently become available even though the recommended amount of time to be on this drug is nine months to two years.

Some people may believe that the side effects experienced in coming off SSRIs are, in fact, their depression returning, so they resume taking them. Side effects can be long-term or lifelong.

Now that the emotionally numbing effects have worn off, after tapering myself off a low dose of tricyclics which I had been on for years for chronic nerve pain, I am happier. The 18 months or so when I was prescribed stronger antidepressants were the worst I have ever felt, physically and psychologically. Research now exists that calls into question the belief that SSRIs recalibrate the brain.

Of course, there are times when treatment with SSRIs is absolutely appropriate but my relevant diagnoses were so instantaneous (and wrong) that I wonder how many other misdiagnoses are 'quickly' made, especially in complex cases.

People diagnosed with Chronic Fatigue Syndrome (CFS) – one of my diagnoses – are often parked on antidepressants and shunned by the Australian medical fraternity, a reason my overarching diagnosis was massively delayed.

This is disturbing because treating a patient’s physical illness – in my case, an inherited connective tissue disease – as psychological at mere face value is medical gaslighting.

HEDS, which I have finally been diagnosed with after 40 years, is a complex and variable disease. Random debilitating symptoms can strike at any moment. In Australia, there is no specialist and it is pretty much off general practitioners' radars — despite a recent study showing it could be as prevalent as one in 500. It may be the root cause of many cases of CFS and Fibromyalgia, just two of many chronic illnesses and conditions linked to hEDS.

Worsening symptoms on more than one occasion resulted in a doctor increasing my dose of antidepressants. However, I stopped "automatically" upping the dose — I have a sense of right and wrong and this intolerable mistreatment was actually worse than my lifelong undiagnosed horrible disease.

My final diagnosis made nearly every doctor’s appointment I have had a damaging waste of time.

I am cognizant of the limitations of time in appointments and the stressors doctors face, but there are enough EDS diagnoses to show that this doesn't need to be a catastrophic situation. All that time spent making inaccurate, off-the-cuff assumptions and projections could have gone towards making a proper diagnosis.

Once I came across the Beighton score for hEDS, which states extremely visible, defining symptoms, I finally found my diagnosis. These are things doctors could very easily weigh up instead of endlessly screening X-rays and insinuating, "It's all in your head".

The final diagnosis by a clinical geneticist was almost anticlimactic it was so straightforward. There was waiting involved, for appointments, the cardiologist and further DNA results to rule out worse EDSs. I needed that time to process that my deep distress at deplorable medical appointments was actually my compass and had pointed to a real disease all along.

Knowing, therefore understanding, is the opposite of the archaic thinking of the nocebo effect, where "hypervigilence" is meant to lead to a worsening of symptoms. That abysmal profiling goes against the medical code of practice – however voluntary that is – and health care rights.

It blows my mind that in a supposedly progressed society this still rampantly occurs around real diseases — the irony that knowing, therefore understanding, causes less "hypervigilance" is not lost.

Knowing has brought profound relief and closure, after decades of my "knowing" that something was definitely wrong, not "in my mind" as doctors had implied. This is true for other hEDS sufferers. And it is absolutely what helped me “get my mojo back” — not the antidepressants, as predicted by one GP.

EDITOR'S NOTE: This article should not be considered medical or mental health advice. 

Mary Jane Crowley has degrees in fine art (painting) and environmental science. Her delayed diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) has prompted her to raise awareness of EDS to help others.

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Antidepressant overkill: One woman's nightmare

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