“First and foremost, we are human beings, and human beings are kind.”
Humans of Medicine #43
This publication is in conjunction with the upcoming initiative by MMI on contract doctors in Malaysia. Further information can be found at @mmi_social on Instagram.
Tareq Nassri is a 38-years-old activist and Gemini residing at Langkawi at the time of interview. After testing positive for HIV in 2013, he pursued holistic therapy and motivational speaking, publicising his story on SAYS, TedX, The Sun Daily and numerous other platforms. In this article, he shares with Malaysian Medics International his view on the role medical professionals play in protecting the mental health of a person living with HIV.
HIV, three letters that simply abbreviates the human immunodeficiency virus, has sparked many heated discussions due to its associated risk behaviours. People diagnosed with HIV expect to depend on healthcare experts like a lifeline — a trusted navigator in the dark and a voice of reason to differentiate fact from speculation — but often end up with fists clenched around frayed ends. To raise a plain example: I was repeatedly assured that testing positive for HIV was not a death sentence, that I could live with HIV without shame, but those words, intended to comfort, rang mockingly in my ears as I made my way to the ground floor of Hospital Sungai Buloh to receive treatment at an area near the toilets, under a big sign screaming “INFECTIOUS DISEASES.” Which message was I to take to heart? Impersonal advice uttered mechanically, or the poorly disguised judgement that had manifested as an absolute lack of empathy?
Ten years ago, when I had first received my diagnosis, I went through the standard procedure of medication and follow-ups as recommended by my doctors. Two years down the road, my faith in the healthcare system had faded; medical treatment was doing me more damage mentally, if not physically. I remember very clearly the medication I was first prescribed, that was supposedly my only beacon of hope to live a normal, healthy life. Grateful for a solution, I placed all of my hopes and fears on those pills. I was instructed never to skip a dose, to always take the medication at a specific timing, practically religiously; two months later, my lifesavers went out of stock. The doctors then prescribed me another brand of pills as a replacement, claiming that they were one and the same.
Perhaps I could have, eventually, swallowed the anxiety and apprehension around the sudden switch, but the blood I was beginning to vomit alarmed me to the extent of booking a doctor’s appointment immediately. At the hospital, I waited for eight painstaking hours only to be informed that I had to try my luck again the next day. When I finally managed to speak to a doctor, my concerns were immediately brushed off, as if it was completely fine that I had experienced such drastic side effects. All of the panic and frustration that I was feeling were left unaddressed. I had expressed a valid concern about the lack of proper information given, but my worries shoved aside without a single care for the crippling fear sudden, unexplained changes could trigger in a patient. Instead of defusing the situation, the healthcare team’s flippancy sparked an emotional reaction out of me, and I was consequently “threatened” with security and psychiatric evaluation.
Just like the team at the hospital had failed to recognise that my anger had stemmed from a place of fear, no one, throughout the different stages of my diagnosis, had bothered to discover the root cause of my condition. I had a complicated history to unravel; trauma from growing up in an abusive environment — being a victim of bullying at home, school (by peers and teachers alike) and later on in society led me to make rash decisions and grossly neglect self-care.
The urge to get tested for HIV came about during a trip to Australia when a documentary on the hotel television reminded me of its necessity, especially since a recent romantic interest of mine had also tested positive. I was a flight attendant for AirAsia then. I had thought that I was doing alright but in retrospect, my coping mechanisms: overindulgence in work, alcohol, drugs and sex were taking an immense toll on my body.
After my test results were revealed, I was put through a series of questions. Instead of attempting to understand me as a person, healthcare professionals jumped straight into questions about my sexual activity, partners, preferences, and even threw in snide comments along the lines of, “May Allah help you.” Experiences like those made it difficult for me to open up to anyone; needless to say, being directed to different doctors every time I visited the hospital was far from conducive to building trust between myself and any doctor. To make matters worse, I had also been advised by doctors not to publicise my HIV status. They insisted that it would protect me, but all I could think about was the insinuation that I had something shameful that should be hidden away. Who could I trust with such information? Who should I avoid? Why were they making efforts to suppress rather than heal me?
After going through multiple toxic cycles trusting the wrong people and being rejected by colleagues and employers for being HIV-positive, I had finally had enough of feeling like an outcast. It was the year 2015, and there was news in the papers about people dying in their rooms out of shame for having HIV. I was very lucky to have supportive friends, but the possibility of being in the victims’ shoes still haunted me. With the thought that my actions could start a much-needed conversation and positively impact the mental health of people who could relate to my experiences, I shared a post on Facebook and announced my diagnosis to the world.
Henceforth, my journey towards achieving better health took on a different turn. I explored Munay-Ki, tarot, hypnosis and counselling to help myself as well as others in ways that I could, having experienced first-hand trauma that was detrimental to a person’s mental and physical health. I began to embrace my diagnosis as a friend, as my body’s intrinsic warning signs that pushed me to make the necessary changes in my lifestyle. One of my biggest mistakes was, in the very beginning, trying to fight my diagnosis. I had given myself a lot of pressure while trying to overcome my condition, without regard for all the negativity I was imposing on myself. Once I shifted my mindset towards acceptance and positivity, I was finally able to attain tangible progress.
A significant, albeit controversial, change in my healing process was that I had stopped taking medication (on my own accord) two years after testing positive for HIV. Poor experiences with hospitals aside, I was reluctant to depend so wholly on an external source for my wellbeing. In addition to that, side effects of the medication were debilitating to my already deteriorating mental health — my struggles at that time ranged from workplace discrimination to drug abuse; organisations such as the Malaysian AIDS Council offered little support.
It was not until I volunteered at the Positive Living Community Centre in Rawang that my eyes were opened to the devastating consequences of HIV infections in certain populations. The men at the centre took their medication as prescribed — pills which allegedly guaranteed us a long, healthy life—but still they were weak, bedridden and zombified. Wishing better for myself, I reflected on my actions. I then sought to educate myself and made lifestyle changes as appropriate, as I have always believed that that was the first step one should take to improve the health of oneself. After all my efforts towards quitting drug and alcohol abuse, I grew wary of the physical as well as emotional dependency I could develop to my “life-saving” drugs. Freeing myself from a victim’s mentality empowered me to take charge of my wellbeing, to stop engaging in activities that had weakened my mind and body. I took responsibility for decisions that led to me becoming HIV-positive and regained a semblance of control over my health and wellbeing.
Interestingly enough, after three years of emotional, spiritual and mental healing in the Philippines, I eventually tested negative for HIV on three separate occasions. My personal journey with HIV solidified my belief that we are responsible for our own health. In a way, I got myself sick, so I could very well get myself out of it too.
My anecdotal conclusions were met with backlash; however, I had also received letters of gratitude for sharing a truth that resonated with others who were on the same boat—medication, given alone as a primary solution to heal illnesses, is rarely sufficient for the holistic treatment of a patient.
To the medical fraternity: I am a human being, first and foremost, and I have questions, worries and fears. If a doctor prescribing me any type of medication cannot take the time to identify and address my concerns, how can I trust them with my care? If I am expected to live with a diagnosis for life, clarifying any doubts I may have is the least you can do. Information is key! As professionals, you have the knowledge, but we do not. Alas, the ultimate choice of whether or not to take the medication as prescribed falls upon our shoulders. Being denied adequate explanation is harmful towards a patient’s psyche — it compels them to blindly accept and trust their doctor’s orders, or risk compromising their health. The medical system, as it is, does not empower people. It shuts down attempts at communication and traps people in a fixed mentality; it is shame-inducing and oppressive; it is one of the many subtle stressors that slowly but surely chews away at a person’s mental health.
Nevertheless, as I had realised throughout my personal healing journey, empathy and compassion were hard to come by in medical professionals due to the incessantly increasing workload, burnout and overall unethical working conditions in the healthcare sector. That benefit of doubt is why I have yet to completely lose faith in the medical system; it cannot be denied that healthcare workers enter the industry with the altruistic hope of helping people improve their quality of life. While we work towards systemic changes to alleviate the burden on healthcare workers, I extend a small piece of advice to those already in the industry. Ask yourself, at the end of every week, “Am I still being human, or am I completely a robot doctor?”
At the end of the day, the treatment of a patient is a two-way street. Achieving the best possible health outcome will require the combined efforts of two parties: doctors and patients themselves. I know that shame plays a major role in Asian cultures, but shame around being gay or sexually active brought into the medical profession is harmful towards patients and a violation of a patient’s dignity. Muslims or Christians, policemen or teachers; we have our differences, but all of that is just on the outside. Above all, we are human beings, and human beings are kind. If we betray our basic principles, we have then lost our inner selves to labels that do not belong to ourselves. Take back the power over your own life, the power of choice over your own course and destination. Find that inner fuel — that love, compassion and courage — to live a good and healthy life. Start by being compassionate with yourself and you will soon find yourself extending the favour to everyone else.
Eunice Tan is a second-year medical student at International Medical University.
Hopeless with a brush, she paints pictures of her world with prose instead.
Consent has been obtained from the interviewee for the purpose of this publication. The author has rewritten the article with permission from the interviewee.
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.
If you have a story you would like to share, please reach out to us at admin@malaysianmedics.org.
