The story of Anneke
A misdiagnosis of chronic fatigue syndrome in young adulthood bought me a ticket to condescendence, humiliation and neglect. The search for answers for my many and varied symptoms was stopped. It was replaced with persistence that my character was flawed. I loved being dependent, was a lazy perfectionist, had lacked attention as a child. The list goes on.
Despite the challenges I acquired a Bachelor Health Science (Honours) Degree in Occupational Therapy and a Postgraduate Certificate in Health Research. It was somewhat cynical how heavily I became dependent on the health service myself. My OT background and research knowledge remained useful when my brief career as a therapist was replaced with incapacity.
Against the odds, in my early 30’s I found a loving husband. We decided to have a child together.
Bedridden I made the best of motherhood. Our toddler trusted me with his fears. He whispered he was scared I was dying. Just before my lights went out, a blood draw proved him to be correct. It was discovered I suffered from adrenal insufficiency. Diagnoses of lupus and Ehlers-Danlos syndrome followed.
I suddenly earned care and respect. I received support in optimising my level of functioning. The road to recovery was steep and rough. It came with many life lessons.
Despite disappointments in health and social services, I built a happy life. Having returned to Belgium after 11 years in the UK, I am now based in a beautiful rural area called the Flemish Ardennes. I enjoy time with family and friends. Papercraft and crochet, gentle walks, reading and writing are among my regular activities. I have the luxury of a strong network. Under the guidance of an excellent team of doctors, nurses and therapists I continue to grow in strength and stamina.
Gradually I realised that my earlier treatment amounted to abuse, medical gaslighting.
This appears to be widespread. Mainly people who suffer from chronic, rare, barely visible and/or dynamic conditions are faced with it. Shame and guilt stop patients from sharing their suffering. By doing exactly that, I hope to raise awareness.
In my memoir about medical gaslighting I describe my journey to happiness. The publication of ‘Recognise ME’ is planned for mid 2024.
To fellow patients it offers recognition, insight and hope. Here they will find coping strategies and a vocabulary to explain what is hard to grasp about our shared experience. To anyone in a caring profession it provides ways to attend to the needs of patients who have endured this form of abuse.
I believe understanding can lead to improved communication. A more effective therapeutic process should be the result.
For that purpose I am keen also to give talks about medical gaslighting and its effects, from bed if need be.
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