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

[Sly Saint]

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.”

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.

MSN

 

[Jonathan Edwards]

Yes but ankylosing spondylitis and psoriatic arthritis are not autoimmune diseases and not more common in women.

 

[Ryan31337]

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.

 

[Jonathan Edwards]

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.

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.