Battling for a diagnosis

Struggle to be heard: Some of the books written by women who had to fight for accurate diagnosis.

I was born tired. Always fragile, always awkward. It never occurred to me it meant anything. I thought I was weak, physically and mentally, that if only I tried harder, I would feel less uncomfortable, less structurally unsound.

My autism diagnosis made sense of countless things I’ve struggled with all my life, from sensory sensitivities to emotional overwhelm, but there are so many others, including constant skeletal, skin and gut issues, that it doesn’t explain.

This started me thinking about the problems of diagnosis and misdiagnosis, and why so many women are forced to spend decades – sometimes entire lifetimes – trying to get to the bottom of why they feel so bad.

More often than not, the medical profession are little help. For years, the author Elinor Cleghorn’s symptoms were shrugged off by doctors before she was finally diagnosed with lupus, a chronic condition that causes, among other things, agonising joint pain and exhaustion.

Dismissed and disregarded

In her excellent book Unwell Women, Elinor highlights how, throughout history, the male medical establishment has dismissed female pain as the product of wandering wombs or over-active imaginations.

Even now, she points out, women seeking medical help are more likely than men to be offered tranquillisers and antidepressants than analgesics, and less likely to be referred for diagnostic testing – despite the fact that we suffer disproportionately from painful chronic conditions.

It was a similar story for Polly Atkin, author of the wonderful Some of Us Just Fall about her battle for diagnosis. She was in her thirties before she discovered she was suffering from both highly dangerous iron overload and hypermobile Ehlers-Danlos Syndrome.

The latter is a debilitating and often – as in her case – severely disabling connective tissue defect, dubbed ‘the most neglected disorder in modern medicine’ by leading rheumatologist Rodney Grahame.

So wrong about autism

Misdiagnosis is rife, too, particularly when it comes to autistic women. When Caragh McMurtry, an elite rower and founder of the organisation Neurodiverse Sport, was struggling, doctors insisted she was bipolar.

The mood stabilisers and anti-psychotic drugs she was prescribed for five years wrecked her physical and mental health and almost ended her career. At times, she contemplated suicide because she felt ‘so different and so wrong’.

After eventually getting the correct diagnosis of autism and appropriate support, her performance soared and she represented Great Britain at the Tokyo 2020 Olympics and medalled at the Rowing World Cup.

In her memoir Strong Female Character, comedian Fern Brady recounts being told by doctors as a teenager in the Nineties that she definitely wasn’t autistic and what she actually had was obsessive compulsive disorder. As it turned out, they, too, were wrong.

Mislabelled and medicated

Far too many autistic women are still being labelled with everything from anxiety and eating disorders to borderline personality disorder (BPD) and inappropriately medicated.

A study published this year by researchers at Brighton and Sussex Medical School exposes the harrowing impact BPD misdiagnosis has on autistic adults. 

A reader of this blog contacted me recently about her experience. She wrote, “This happened to me and has caused so much distress and invalidation over the years.

“I think psychiatrists may still prefer to diagnose women with ‘personality disorders’ rather than autism despite the consequences and injury. We then become trapped in that identity as no-one suggests to us that we might be autistic.

“The cost of missed diagnosis can be heavy, not least in diagnostic overshadowing and doctors belittling our physical health issues. So many of us have a list of issues such as IBS, ulcerative colitis, hypermobility, fainting spells, yet no-one connects the dots until we do!” 

You can read an anonymous blog about her truly awful experience here.

Clinical call to action

So what’s to be done? According to Dr Bruce Tamilson, lead author of the Brighton and Sussex study, “The participants’ experiences serve as a powerful call to action for clinicians and researchers alike, emphasising the need for accurate diagnoses and appropriate support for all individuals.”

In the meantime, I’ll press on – with or without the support of the NHS – towards an accurate diagnosis of what ails me. Hopefully, it won’t take too much longer.