‘Gaslit for years’: How women with autoimmune conditions are misdiagnosed

Sly Saint

Sly Saint

Senior Member (Voting Rights)
When Jen Parker went to her doctor in her teens with pain and clicking sensations in her knees and hips, she was told it was growing pains. Physiotherapy and hydrotherapy sessions followed, and eventually an X-ray, but it would be many years before she got a full diagnosis of ankylosing spondylitis and psoriatiatic arthritis, by which point the impact of these two autoimmune conditions was irreversible. “There’s permanent damage in my spine, knees and hips due to the long delay in getting a diagnosis,” says Parker, now 37, who lives in Market Harborough, Leicestershire, with her husband and two children. “For many years I found it hard to get taken seriously, and consultants would often fob me off or be dismissive of my symptoms. It took far too long for a rheumatologist to ask all the right questions and see that my symptoms were linked. But this is what women with autoimmune conditions tend to go through – long delays, needless suffering and generally not feeling heard.”
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Women have up to a fourfold increase in risk for autoimmune conditions, such as lupus and rheumatoid arthritis, Crohn’s disease and scleroderma. Many, like Parker, find themselves victims of medical gaslighting and a long, isolating and frustrating road to diagnosis and treatment. There are more than 80 autoimmune diseases – where the body’s natural defence system can’t tell the difference between your own cells and foreign ones and mistakenly attacks the normal ones – and they are found to affect around one in 10 people. They are frequently misdiagnosed, and it takes an average of five years to get a diagnosis. Research suggests women may be more prone to autoimmune conditions because of hormones, environmental factors, antibodies produced during pregnancy and the impact of the microbiome. Recently, researchers have shown that a molecule called Xist — found only in women — is a major culprit in these diseases, triggering a chemical response that is a hallmark of autoimmune conditions.
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Ryan31337 said:
Some recent studies have shown a female predominance in nr-AxSpA. Whereas AxSpA is closer to 1:1, way down from the original assumptions of strong male predominance.
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In clinical severity terms I do not see any doubt that axial spondarthritis is a bigger problem in men. non-radiographic spondathritis seems to me a concept begging to be a political football and not much else.

Any way these are not autoimmune diseases so the whole piece is pushing a phoney argument.
 
I suppose it was that same attitude that led to the delay in my nr-AxSpA diagnosis and subsequent treatment with biologics that halted progession and significantly improved my QoL.
 
Ryan31337 said:
I suppose it was that same attitude that led to the delay in my nr-AxSpA diagnosis and subsequent treatment with biologics that halted progession and significantly improved my QoL.
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More likely someone was spending too much time putting patients into pigeonholes rather than listening to their story and checking the CRP I suspect. It is the pigeonholing that I see as unhelpful.
 
From my perspective it was older doctors unwilling or unable to acknowledge modern terminology and consensus guidelines that have been around for well over 10 years now. To date I still don't think i've had anyone but my diagnosing Rheumy even use the correct terminology in correspondence.
 
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