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