“Treatment Started Immediately, and My Journey as a Patient Began”

Humans of Medicine #14

I grew up hearing recollections from my family about how I had survived a paediatric surgical emergency in the mid-80s before the tender age of one. As a child, I often felt that the story was hard to believe. Apart from the midline scar, I felt absolutely normal – just like any other kid. 

I remained mostly healthy throughout my childhood and early adulthood. By that time, I had already become a doctor and had mostly forgotten about my turbulent past. I don’t have any memory of it, nor did any more events occur that supported the notion that I ever was, or am still, ill. 

However, it all changed four years ago. I started to notice disturbing symptoms that suddenly took away my ability to perform even the most basic activities of daily living. Although the investigations were suggestive, diagnosis was never made because, according to my doctors, I looked too fine to be that ill. The investigation results must’ve been wrong, they said.

I continued living undiagnosed and untreated for a couple more years, feeling completely miserable and lost. Until one day, a doctor put it all together and ordered the right investigation, revealing the diagnosis which confirmed my suspicion: I do have a serious illness lurking inside me.

Treatment started immediately, and my journey as a patient began. After more than thirty years since the first surgery, I had to accept that I have chronic illnesses both related and unrelated to my original paediatric pathology. This time though, I have memories of it and no longer have to hear recollections of it from others.

Ever since I became a patient, I became aware of how my medical training has provided me with an advantage. My education may have played some role in the final discovery of the diagnosis by endowing me with the knowledge to ask probing questions, which helped my doctor further refine my personal care plan. 

But, what about the average patient? Would they be disadvantaged because they lack the knowledge that would allow them to seek further medical attention or actively participate in organising their care plans?

That was when I knew I had to start educating and advocating for patients. By educating patients about their rights and responsibilities, patients would be aware of their roles in improving their experiences with healthcare, allowing them to make autonomous decisions and take actions towards that end. By advocating for better patient experience through the sharing of my own experiences with others in my profession, I am hoping they would leverage on it and continuously improve while consciously putting patients at the centre of it all.

With that in mind, I started my blog a year after I was diagnosed, where I publish articles advocating for patient experience. On a weekly basis, I write articles for patients, healthcare professionals, and healthcare administrators to inform them about the most relevant and up-to-date topics on patient experience, hoping to create the change that I envisioned. 

Perhaps all that I went through has been preparing myself for this purpose. Being a patient with a medical background means that I have a particularly unique voice, and it is incumbent upon me to use it to speak up for others and continue to fulfil that purpose. I now call upon you to join me and play your role, be it as a patient or as a healthcare professional, to improve patient experience. Together we can educate and advocate for better patient experience and patient-centred healthcare in Malaysia. 

Dr Aida Salam is a medically trained healthcare administrator whose experience as a patient has driven her to become a patient-experience advocate through her weekly blog articles at www.walkinginpatientsshoes.com

(Written and submitted by Dr Aida Salam. Consent has been obtained for the purpose of this publication.)

Humans of Medicine is a new initiative under MMI. We tell inspiring stories behind portrait shots of our everyday unsung heroes. Curated by Malaysian medical students from home and abroad.

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