The Hidden Struggle: My Journey with Pernicious Anaemia

The Hidden Struggle: My Journey with Pernicious Anaemia

By Katrina Burchell Chief Executive Officer, Pernicious Anaemia Society

I was 38, a professional in-house lawyer and mother of two, when finally diagnosed with Pernicious Anaemia. It took over a decade to get a diagnosis, after which I was simply given 12 weekly B12 injections and sent away. It took another ten years for symptoms like fatigue, anxiety, panic attacks, peripheral neuropathy, tinnitus, brain fog, nominal aphasia, and breathlessness to diminish. This extended suffering was partly due to inadequate B12 injection frequency and an undiagnosed iron absorption issue, but also because I wasn’t told I had a chronic, manageable condition.

Symptoms of PA develop gradually and overlap with other conditions, making diagnosis difficult.  There is a lack of sensitive tests and research. Mid-career women, particularly mothers, often face medical gaslighting, and in professions like law, the pressure to overperform can be immense. PA is often wrongly dismissed as a simple nutritional deficiency; unfairly implying patients are responsible for their condition.

My health decline was stark. I went from a confident, organised manager running a global team, participating in 5K/10K races, and maintaining an active social life, to a barely functional employee. I hid panic attacks, overcompensated for fatigue and brain fog, and spent two or three times longer on simple tasks. I withdrew from everything beyond my job. Despite being an empathetic leader, I never disclosed my condition at work.

My journey to accepting my condition and its fluctuating limitations ultimately led me to leave law and become CEO of the Pernicious Anaemia Society. My goal is to educate others, raise awareness, and improve understanding. In this role, I encounter countless individuals who, like me, are reluctant to disclose their condition or seek workplace accommodations.

One-third of patients experienced symptoms for up to 1 year before diagnosis, 22% had to wait 2 years, 19% for 5 years and 4% for 10 years for an accurate diagnosis. 14% of individuals experienced symptoms for more than 10 years before arriving at their diagnosis. Patient journeys: diagnosis and treatment of pernicious anaemia – PubMed

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