Extreme depression: One woman’s nightmare

The overprescribing of SSRIs is getting worse Mary Jane CrowleyMedical complications delayed his diagnosis of Ehlers-Danlos syndrome (EDS).

A YEAR-OLD JOURNEY MY YEAR-OLD was diagnosed with hypermobile Ehlers-Danlos Syndrome (HEDS), another point has been of great concern: since 1997, when I sought help after years of chronic joint pain and symptoms that many doctors thought I needed (Selective serotonin reuptake inhibitor) SSRI antidepressants.

I respect the experts, so I took them at first, but they made more symptoms worse and I went off on my own – in my experience, a debriefing conversation doesn’t happen. Once on anti-depressants, it quickly became, “Case closed… why are you asking questions?”

I was shut out by doctors for decades even as my symptoms got incredibly worse. This only resulted in more expulsions.

The pathologising of medical issues and the treatment of grief, which my unique physical symptoms were considered to be, seems like an easy segue into a career that, more often than not, seems to work with business process. And the business is run in very difficult stages.

Australia has one of the highest rates of anti-depressants in the world. A recent BBC article shows that there is no long-term study on the effects of antidepressants – we are a long-term study.

Australian prescribing guidelines for SSRIs have recently become available although the recommended time to be on this drug is nine months to two years.

Some people may believe that the side effects they get from SSRIs are, in fact, their depression coming back, so they start taking them. Side effects can be temporary or lifelong.

Now that the emotional side effects are gone, after tapering off the low dose tricyclics I’ve been taking for years for chronic nerve pain, I’m much happier. The 18 or so months I was prescribed the strongest antidepressants were the worst I had ever felt, physically and mentally. Research is now available that questions the belief that SSRIs restore the brain.

Of course, there are times when treatment with SSRIs is completely appropriate but my positive diagnosis has been so immediate (and wrong) that I wonder how many false diagnoses have been made’ quickly’, especially in complex situations.

People diagnosed with Chronic Fatigue Syndrome (CFS) – one of my diagnoses – are often stopped on antidepressants and shunned by the Australian medical community, which is why my diagnosis is so serious. which was very late.

This is troubling because treating a patient’s physical disease – in my case, a connective tissue disease – as a mental one based on the quality of the face is medically enlightened.

HEDS, which I was finally diagnosed with after 40 years, is a complex and variable disease. Random debilitating symptoms can appear at any time. In Australia, there is no specialist and it is very much on the radar of general practitioners – despite a recent study suggesting it may be as common as one in 500. It may be they are the cause of many cases of CFS and Fibromyalgia, just two of the many chronic diseases and conditions associated with hEDS.

Worsening symptoms on more than one occasion resulted in the doctor increasing my dose of anti-depressants. However, I “automatically” stopped increasing the dose – I have a sense of right and wrong and the intolerable abuse was actually worse than death my lifelong unknown.

My last checkup made almost every time I saw a doctor a waste of time.

I am aware of the limitations of time in selecting people and the difficulties that doctors face, but there are enough studies of EDS to show that this need not be a dangerous situation. All that time spent making incorrect assumptions, and incorrect assumptions could have made for an accurate analysis.

Once I found Beighton’s score for hEDS, which means highly visible, descriptive symptoms, I finally found out what I was diagnosed with. These are things that doctors can easily test for instead of taking endless X-rays and saying, “It’s all in your head”.

The final diagnosis by the geneticist was almost anticlimactic it was so easy. There was a wait involved, for options, cardiologist and other DNA results to rule out bad EDS. I needed that time to think that my deep depression at the worst medical times was actually my compass and had been pointing to a real illness.

Knowing, therefore, understanding, is different from the old thinking of the nocebo effect, where “hypervigilance” is supposed to lead to worsening of symptoms. That appalling profiling goes against the rules of medical practice – however voluntary – and health care rights.

It is heartening to me that in a supposedly advanced society, this is happening so often around real diseases – the irony that knowing, and therefore understanding, causes a little “hypervigilance” is not lost.

Knowing brought great relief and closure, after decades of “knowing” something was wrong, not “in my mind” as the doctors had said. This is true for some HEDS patients. And that’s what helped me “get my mojo back” – not antidepressants, as one doctor predicted.

EDITOR’S NOTE: This article should not be construed as mental health or medical advice.

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