On the Flip Side: When Doctors Become Patients
What happens when a doctor trades her white coat for the hospital gown? A doctor shares her struggles with a debilitating illness and the lessons she learned.
As doctors, we do our best to be compassionate and empathetic towards our patients, but we often just don’t fully grasp the experience. When we fall ill and comprehend what it is to be on the opposite end of the doctor-patient relationship, this radical change of identity compels us to see and think about things differently. Looking at an illness through the eyes of a patient can be especially humbling for us doctors. Our journey makes us realise that our view as a healthcare provider is only one of many other possible perspectives.
Medic Footprints Malaysia would like to express our sincere appreciation to Dr Nabila on her willingness to recount her narrative. Here is her story; the challenges she faced, the lessons she learned and the hopes she holds for the future.
For one week, Dr Nabila had been feeling tired and short-of-breath. She brushed it off, putting it to the strenuous training of medical school. When she started to pant heavily on very slight exertion, she walked to the A&E where she trained as a medical student for a quick work-up. They later found out she had had massive bilateral pneumothorax. For the next couple of years, Dr Nabila was in and out of hospital for recurrent episodes of pneumothorax. She was forced to put her medical studies on hold.
Thus began the arduous journey of a doctor who found herself on the flip side of care. Little did she know that the breathlessness event would have an eternal impact on her life. Dr Nabila was 26 when she was first diagnosed with lymphangioleiomyomatosis (LAM); a rare systemic disease in which abnormal smooth muscle cells grow out of control typically in the lungs, resulting in cystic lung destruction and respiratory failure. She was in her final year of medical school and had newly tied the knot with her high school sweetheart. Youthful, full of life, so eager to start adulthood, but then her body gave out on her.
The journey continues
On her body, there are numerous scars from the multiple insertion of chest tubes. Each a reminiscence of the pain she had gone through. To this very day, the sight of a chest tube evokes a painful memory in her. Pleurodesis; a procedure she endured to reduce the risk of pneumothorax recurrence, was not a walk in the park either. She drifted into a slump, depressed. The physical agony and the mental woes are still vivid in her mind.
After her diagnosis was revealed, Dr Nabila was told that she had only two years to live. In denial and angry at first, she finally accepted what’s written in the stars.
The support system
Things may be going crazy, but she had an unfailing family as her pillars of strength. When Dr Nabila had to spend months in the hospital, her mother practically lived with her, taking care of her needs. Her husband was always at her side, boosting her morale. Everyday after work, he would show up without fail at the ward to spend time with her. The nurses and doctors were also kind, often allowing the newly-weds longer visiting hours to be with each other.
Despite her predicament, Dr Nabila chose to complete her medical studies. She remembers the kindness of her peers and lecturers who went out of their way to help her study and sit for exams. Even though she had to extend her medical school training by one year, she has no regrets. During the gruelling years of housemanship, she was also very fortunate to work alongside understanding colleagues and motivating superiors. Those who were aware of her condition helped organise the work roster so that she could attend her medical appointments.
The goodness of the people she met along the way definitely made her journey through LAM much more bearable – and for that, she is forever indebted.
“I could never have children”
Dependent on sirolimus, a teratogenic immunosuppressive drug, Dr Nabila realised her chances of being a mother were slim. Pregnancy has also been known to exacerbate LAM, so she has been counselled against trying to conceive. Heart-broken, Dr Nabila was resigned to her fate; she will never have little mini-mes she could call her own.
But life had a pleasant surprise for her. At one point, her doctors were not able to get hold of sirolimus for her treatment. Since her lung function was relatively preserved, they suggested that Dr Nabila might be able to tolerate pregnancy if she wished to attempt it.
Although well-aware of the possible complications and poor obstetric outcome, she chose to take the risk. Praise to the Almighty, she conceived soon after and sailed through the delicate months while undergoing housemanship. Her babies were born premature but they were tough just like their mum. Today, Dr Nabila is the proud and protective mum of boisterous boy-girl twins, a blessing she could never dream of before.
Walk in my shoes
What does it feel like, living with this 24-letter illness? Imagine having a condition which strikes you during the prime of your life, robbing you of opportunities and enjoyment of life. And that is what Dr Nabila has to brave through.
Once upon a time, she aspired to be an emergency physician. She gave that dream up, knowing full well that the rigorous demands of the job would not be ideal for her. The thought of not being able to save a patient’s life because she could not exert herself physically terrifies her. Brisk walking and climbing a flight of stairs leave her breathless, let alone performing physically-exhausting CPR.
As she continues her disease monitoring under the care of chest physicians in Klang Valley, her husband has had to turn down job offers in other areas so that he could be with her and their family.
Learning to scuba-dive and travelling the world are some of the things in her bucket list she has had to forgo. Due to an increased risk of spontaneous pneumothorax, her doctors advised her to avoid undertaking air travel, scuba diving and travelling to high altitudes. Not one to concede defeat, Dr Nabila plans to drive from Kuala Lumpur to Mecca with her husband one day to perform the hajj pilgrimage.
These days, she busies herself working as a medical officer six days a week. Her day off is spent making memories with her children. To keep in shape, she does yoga regularly. She joins fun runs even though she actually just walks. Occasionally, she goes hiking with her husband. She may be slow, making a lot of stops along the way, and sometimes her husband has to carry her, but she gets to the finishing line nevertheless.
Lessons from “the other side”
Being a patient herself, she understands what patients are going through – she can relate on so many levels. Rehashing the past, she details her previous encounter with one of the chest physicians treating her. Affecting only 3 to 5 of every million women, LAM is a very rare disease. Dr Nabila recalls that the physician was a little too excited to have her as a patient. She was made to feel like she was an “interesting case report” instead of a person with an identity.
Dealing with LAM has made her a better doctor. It took her level of empathy to a new high. When patients come in aloof, grumpy, or tired; she has felt all of those, so she can appreciate them. Having that firsthand experience impacts how she communicates with her patients.
Dr Nabila adds, “My profession has made living with this condition both easier and more difficult. I have the medical knowledge to understand what was going on and what is involved. But it’s a double-edged sword. I know of all the other possibilities and thinking about that happening to myself could be very difficult.”
In a profession that prides itself on bravado and stoicism, Dr Nabila admits that at times she struggles in silence. Given the nature of her disease, tasks requiring physical exertion will leave her breathless and fatigued. She feels ashamed if her colleagues have a negative impression of her; thinking that she is dodging work, or not contributing enough. So she avoids being candid about her illness – the fear of being judged or stigmatised by others is overwhelming. She carries on as usual as much as she can, refusing to be viewed as a slacker.
Que sera, sera
Dr Nabila has proved her doctors wrong. Ten years on, she is still here, breathing and kicking. This strong-willed lady came out of her illness a very different person. Her life-changing experience has made her more grateful for her life. Realising she may not be here tomorrow, she stops taking time for granted. If there is something she feels like doing, she does it straight away. She wants to make every single moment count, living her life to the fullest.
Dr Nabila knows there is no cure for LAM presently, but she does not want to indulge in any negativity. “It is not about how long you live, but how you live your life. I want to stay positive and make the most of what God has given me,” confided Dr Nabila, determined to reclaim her life.
Her disease is progressing slowly. One day, she may have very limited ability to move around and may require oxygen full-time. But she still considers herself one of the lucky ones. She hopes one day there will be a cure for LAM. Her family is her rock, the driving force for her to keep fighting; one breath at a time.
When doctors become patients
Doctors commonly forget that we too are mere mortals. Our roles as healers often preclude thoughts of ever getting ill or wounded ourselves. But unfortunate things can happen to us, just like anyone else. Most doctors will become patients at some stage in our lives. When we get a glimpse of what it is like to be on the other side, when we are staring at our own vulnerability – this change of perspective can be eye-opening. Our experiences allow us as doctors to identify with our patients, to understand them and their struggles better.
Sometimes, doctors tend to speak to each other rather than to the patient. The patient then is at risk of being treated like an object; a body inside which a disease happened. The seemingly small annoyances – miscommunication, insensitivity, uncoordinated care – can become a big deal to patients. It is crucial therefore for doctors to realise that our words, our expressions, our behaviours, can impact massively on the people we look after.
Counter-intuitively, doctors make the worst patients, well-known to ignore our symptoms and delay treatments. We need to be aware, however, of our own mortality and not be ashamed to look for help if we need it. Take the time to heal and listen to our body. And don’t forget to keep an eye out for our colleagues who may need our support.
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