More than the body parts: Reflections from a doctor’s experience as a patient

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What happens when a doctor becomes a patient? Dr Brenda Kubheka writes about the things she realised when she heard that she was losing her hearing

I remember the days as a young patient in a specialist ear, nose and throat clinic at a local tertiary hospital.

The thought of my bimonthly check-ups was daunting and filled me with apprehension for various reasons.

One of them was being very young in a clinic with older people who had tracheotomies from throat surgery probably for cancer, to people with bandages covering half of their faces.

The clinic was a passage-like tiny room, not far from the hospital’s main entrance. The waiting area had no window and it had a distinct smell that sickened me more often than not.

My mum, a professional nurse at the hospital, used to take me to these visits.

Sometimes she’d be on duty and miss the actual consultations because she’d be looking after patients in the ward and couldn’t leave them to be with me.

The clinic had two doctors and two examination chairs. I was never sure which doctor would attend to me at any scheduled visit.

I looked forward to being attended by the head of department, a white middle-aged man who treated me like a human being who was worthy of dignified care and his time.

He attended to me most of the time and I suspect that someone had something to do with it.

But then there was a younger white doctor who treated me like my whole being was a pair of ears. He never listened to any of my complaints nor answered any of my questions.

He would check one ear and turn my face and look at the other ear.

This was routinely followed by scribbling notes and a prescription without bothering to explain anything.

I vowed that when I grew up, I would go to medical school to become a better and compassionate doctor. In hindsight, my experience forced me to appreciate that patients are more than the body parts that are bothering them and I am an advocate of discouraging the practice of medicine “by body parts”.

Little did I know that in a few years’ time I would find myself in a position where my ears took over my mind.

The science

The problematic ear had been operated on without significant functional improvement. And, unfortunately, the hearing in my good ear had been slowly deteriorating over the years.

I found ways of coping with the hearing impairment – looking at people’s faces when they speak; using a speaker when talking on the phone.

A few months ago, I realised that my hearing was getting worse. I struggled to follow conversations in the boardroom, especially if I couldn’t see people’s faces. This became a source of frustration.

The emotions

It also had a negative impact on my self-esteem and I constantly worry about coming across as inattentive or lost during critical discussions and, get embarrassed asking people to repeat what has been said.

I was scheduled to do a telephonic interview with one of the local radio stations, and I was petrified that my ears might fail me on air. Surprisingly, I managed it very well and this made up for all the jokes I missed in a workshop I attended a month ago.

From doctor to patient

I decided to consult with my ear, nose and throat surgeon who found out the good ear was deteriorating. I was hugely disappointed and felt that my ear had let me down.

I was informed that I have to consider a hearing aid to enhance my hearing and to improve my quality of life.

One would expect that, being a medical doctor and knowing that I suffer from a manageable medical condition, I would accept the news with optimism.

Little did I know that the thought of a hearing aid was going to keep me up for a couple of nights, and also make my tear glands work overtime.

I tried to have conversations with myself and loved ones, trying to understand why I was uncomfortable with the whole situation.

I realised that I was engulfed with fear of the unknown. I was clearly not in denial of the medical problem but only struggled with the recommended intervention and the implicit stereotypes.

Surprisingly, my ear became bigger that the whole of me as I felt like my body had betrayed me.

Issues of identity

I felt that the hearing aid was going to redefine my identity. I felt vulnerable and defeated by the diagnosis and the recommended intervention.

I also saw my privacy evaporating in front of my eyes because the hearing aid would make my hearing impairment obvious to the public, involuntarily so.

This is not denial but an identity and a powerlessness issue. The experience also made me question how we define denial in healthcare and it really opened my eyes.

I now realise that we sometimes judge patients unfairly for not following our medical advice, especially those suffering from chronic medical conditions.

I thought of a hearing aid as an instrument denying me the autonomy to speak for myself and choose what I want to share with the world.

I realised that sometimes we use denial as a misnomer when defining patients’ actions or inaction as denial of the diagnosis for their ailments instead of separating diagnosis acceptance and grief for the loss of body function as well as accepting the recommended intervention.

Understanding

Some patients act against medical advice because humans are biopsychosocial beings.

We disregard the fact that patients might refuse to take medication or miss their appointments because they feel betrayed by their own bodies and are trying to come to terms with the unexpected diagnosis, in their own terms.

Critically, social construction of diseases and stigmatisation of certain medical conditions may lead to patients foregoing the care they desperately need.

Similar to my case, patients may accept the diagnosis but prefer to keep their stories as private as they can especially the stigmatised medical conditions that are treated in special or designated clinics.

It is vital for health service providers to understand patients’ reasons for delayed access or refusal of care.

Such patients must be engaged from their own truths instead of bombarding them with scientific information.

I have accepted that the hearing aid might speak and hear on my behalf and I have accepted this fact.

I hope this story will liberate people who are struggling with similar challenges and also remind health professionals that every patient is unique.

Patients are more than a collection of biomedical cells but biopsychosocial beings that are vulnerable to self-doubt and, may be victims of internal and external stereotypes. The conversations with the surgeon and audiologist became more meaningful when they embraced my unscientific truth.

Patients may process news about their health in a manner considered illogical by people around them, but all patients deserve to have their truth heard and acknowledged.

• Brenda Kubheka is from Health IQ Consulting, which provides risk management, quality improvement and clinical ethics services in the health sector.

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