My story as an expert patient – How do you advocate for yourself in healthcare?

Apr 19, 2023

We frequently see patients who have discovered and read about their medical condition or suspected medical condition on the internet. I was one of those patients.

The “Expert Patient”friendly female doctor or nurse communicates with a patient while visiting her home woman is sitting t20 ZJzyon

Who is the expert, the doctor with a medical degree and significant training or the patient who has lived with their ailment for 20 years or more?

I was diagnosed with an extremely uncommon cardiomyopathy 20 years ago. Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) (1) is a significant cause of sudden adult death syndrome (SADS). I went to the internet, despite the fact that it was still in its infancy when I was diagnosed (around 2001).

My biggest concern was determining when I would be able to resume sports activities, but after reading a few ARVC-related internet articles, I realised this was the least of my concerns. The everyday emotional torment and upheaval that followed was horrific. I was hospitalised to my local hospital after a particularly horrible night of palpitations and chest discomfort. I was 21 years old and afraid. The respiratory specialist sought to dismiss me the next day on the post-take ward round because I was back in normal rhythm. Based on my research, I refused to leave the hospital and requested that they contact my cardiologist in Cambridge and show them the previous night’s electrocardiograms (ECGs). I feel my tenacity saved my life.

When the ECG indicated serious irregular heartbeats (ventricular tachycardia), I was moved to Papworth for an ICD and medication adjustments. The medication modification improved my heart rate management, but having the ICD as a safety net was a big comfort. Footballers and other athletes, such as batsman James Taylor, are sometimes affected by this illness (2).

Being a patient and having this experience, I believe, increased my ability to listen and put myself in the shoes of a patient. As a healthcare professional I find sometimes, at the end of a consultation you can feel the dissatisfaction emanating from the patient (and their family).

It is vital at this time to take a step back, listen again, and potentially investigate something you had not previously explored. That will take time, but it might be vital.

Doctor and Patient: Therapeutic relationship


I am not suggesting that patients be aggressive in their encounters with healthcare personnel. The ideal relationship is one of mutual trust and cooperation. A connection in which the patient feels listened to and valued is therapeutic in and of itself. Along the way, I’ve met several outstanding healthcare experts. The finest conversations I had were usually those in which I felt heard, believed, and given hope and encouragement.

Practical steps to empower you within your consultations


  • Because knowledge is power, learn as much as you can from credible sites like:


  • Bring a trusted friend or family with you if you are feeling overwhelmed and unable to stand out for yourself. During a consultation, a friend or family might remain calmer and more focused.
  • Attend screening programmes, follow-up visits, and communicate with your healthcare practitioner.
  • Due of the rarity of my ailment, I joined Facebook groups – I am a member of numerous ARVC-related Facebook groups. They hold conferences and meet-ups, but most importantly, they provide a place where others “understand you” and your symptoms. I moderate the ARVC and pregnancy Facebook group; we are a global community that provides support and knowledge.

References and links

    1. Arrhythmogenic cardiomyopathy – BHF
    2. What is ARVC, the disease that ended James Taylor’s career, and what other sportsmen have been affected? (


Dr Kirsten Protherough Admin

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