Dr Chanèl Rossouw
TB crept into my life slowly, long before I started coughing. I felt tired and my sense of humor took a dive; not unusual to experience from time to time since the emergency room (ER) is often intense. But it worsened no matter how much space I tried to create in my life. I struggled to work and socialize so I took fewer shifts and withdrew, eventually struggling to work at even half my usual capacity.
Exhaustion slowed my life to a cold pace, but in the emergency room, my heart started racing when things went into a spin. I’ve been in ER for years, accustomed to replacing that initial jolt of emergency-related stress with a sense of calmness and decisive control. Now the lack of capacity I had made me back away to the doctors’ room, trying to calm myself. Fatigue and mental cloudiness made me apprehensive about doing resuscitations; I worried that I wouldn’t be able to think clearly. “This is crazy; I can’t feel this way! I need to be in control, I need to handle whatever comes in through those doors!”
I spent all my free time on the mountain, drawing on nature to calm me, but eventually stopped even that. I remember looking up at Table Mountain one afternoon, unable to feel its usual call. I searched for the emotion that usually rose to the warm sun and blue sky, but felt blocked from the outside world, as if I was in a bubble, able to see it but unable to feel it. I didn’t have the energy to show up to everyday things in my life, not to mention the things I loved. I became cynical and lost my compassion, behaving in uncharacteristic ways and becoming more and more removed from the sense of meaning I had. Alarm bells started to sound. “What’s happening to me? Am I depressed?”
Were it lifted
Light would filter in
I dream I’m a traveler
Everything is new
When the coughing finally started, I assumed it was just a cold, but within days I started struggling to do things that I’d done just a short while before. One afternoon, desperate to get back to the routines that kept me healthy, I went for a walk and was shocked to find that as a 33 years-old hiker and mountain biker, I couldn’t manage to walk one residential block without stopping to rest. It had been nearly three weeks since I’d started coughing and stopped sleeping. I hadn’t had any fevers or night sweats.
The next day I struggled to keep up with the pace and escaped to the quiet tea room, willing its warmth to fill me, but the energy wouldn’t come. I was the only doctor on duty and cardiac monitors beeped incessantly through the door. Closing my eyes, I drew a deep breath to calm myself, but started coughing again. I pulled a stethoscope from my pocket and held it to my chest, determined to name the worry that was forming in the back of my mind.
The truth at your door
Then inside, whether you like it or not
That same day I saw a young, healthy-looking man in his twenties. “Hey doc, I have this annoying dry cough and I need to get rid of it — I’m really busy at work.” I did his X-ray routinely because he’d been coughing for so long and recognized the classical TB picture right away.
When the unit finally settled down, I went for my chest X-ray. Afterwards I walked into the radiology office and my eyes fell on the screen. I saw that same classical picture. “That’s not my X-ray, is it?” The radiologist looked up at me with pity on her face and replied, “It could be anything.”
Fear and misplaced guilt rushed into my heart — I’d just travelled to Namibia by airplane and spent a week with my family. My sister’s kids were young and would be at risk for complicated forms of TB if they were to become ill from it. Would my friends get sick? What about my colleagues and all the patients I’d seen? Being aware of TB and experiencing it personally is different; it reminded me of how connected I am to everyone and everything around me — I’m a daughter, a sister, an aunt, a friend, a partner, a housemate, a neighbor, a colleague, a doctor, a patient. Wherever I’d been, TB had been as well. I was scared for myself, but more so that it would hurt people around me.
My body was ill and while waiting to hear what type of TB I had, it allowed the fear of drug-resistant TB to burn in my mind. It felt dark around me. I felt dissociated from who I am, like a stranger to myself.
If there were no people bringing hope in the war against TB, I would have had to wonder for weeks what would happen to me. TB would have continued to suppress my body, mind and life. Fortunately, I got to make use of new technology that can have the answer ready in a few hours and the following day I received a call from the pathologist: “You have TB and it’s sensitive to Rifampicin”. He seemed surprised by my audible relief, but I knew I was lucky — 6 months of first-line TB drugs and a treatment success rate of 78% was the best case scenario (stats from the Global Tuberculosis Report in 2015, the year I was diagnosed).
During the first two weeks after starting treatment I could still infect others and had to be quarantined at home. I was lucky to have access to the right information and treatment, and to be taken care of by my friends. We knew the correct ways to protect them and they often came by to check on me.
Although I had knowledge of medicine, I still felt scared and isolated. I contacted TB Proof, a TB advocacy organisation, and spoke with Dalene & Arne, whose insights were a great support. I was inspired to start volunteering with TB Proof and felt connected to team members through our shared vulnerability; hearing each person’s account reminded me what a privilege it is to make it through challenging times and to be able to love and contribute personal energy into the world.
After the first two weeks of TB treatment my cough subsided. I started sleeping again and my memory and mental capacity improved. My quarantine period ended. A few weeks later my mood lifted and I started socializing and venturing onto the mountain again. Within two months my energy returned and during the last of my six months of treatment, grateful for every breath, I climbed 5895 metres above sea level to the oxygen-poor summit of Mount Kilimanjaro, the highest peak in Africa. It felt so good to be healed!
I don’t want to get TB again. Even as a medical practitioner with access to tons of information and other medical practitioners, I could not confirm what exactly my rights were with regards to claiming compensation for contracting an occupational disease. Medical investigations, treatments, loss of working ability and a barely-there life capacity translated into a huge loss. The depressive fatigue was scary — so was working under intense stress without the capacity to do so. I had symptoms of post-traumatic stress from the experiences I had during this time; this has largely gone away but resurfaces in a mild form from time to time when it is triggered. My right upper lung is scarred so my risk for respiratory illness is higher than it was before.
Working in a South African healthcare facility is risky business. Compared with the general population, health workers have a higher risk of getting TB, particularly multidrug-resistant (MDR) and extensively drug-resistant tuberculosis (XDR-TB), grave illnesses with treatment success rates of only 54% and 58% respectively (Country profiles for 30 high TB burden countries, Global Tuberculosis Report 2019). Infection control strategies rely too heavily on personal protection (like correctly using the right mask) – which is often neglected due to lack of equipment, naivety, poor education or stigma – and not enough on upstream interventions (like work policies & procedures to prevent pathogen exposure and the design of buildings, including hospitals). Both should be prioritized. In many cases, particularly where severe disease consequences or drug side effects have been experienced, workers are left with permanent damage. Some are advised to not return to clinical medicine due to the risk of re-infection — a devastating loss to the affected person, the health system they work in and the people they care for. This loss is over and above the effects that the illness, treatment and time off work have already had on the individuals and their families.
These losses are inevitably translated to all of us in ways we don’t always foresee. Who will take care of you at your local clinic or hospital if TB continues to rise? Anyone who spends significant time in a health facility is at an increased risk of this illness — how will we be safe when we go to our clinic or hospital? Who will raise our children, look after our families, when TB separates us, and what will the effects of that separation be, long after either the TB or our lives are gone? What about those of us who have no support and are too weak to get up? Where will the money for food come from? Who will take us to the clinic? What if we don’t have access to the right information and treatment? Who will help us deal with the isolation and loneliness, the loss of bonding, of connection, or worse (if stigma has its way), of a place in a home and community, a sense of belonging? Who will replace the human potential that TB robs from us?
It’s worrying how little people know about TB, considering that it’s the leading cause of death from an infectious disease worldwide. I’m always surprised by this common response (especially when it comes from health colleagues!) when I tell people that I’ve had TB: “Where did you get it?” I simply breathed it in — TB is airborne. Many people think it’s not a risk to them if they’re young, healthy, aren’t poor or if they come from a country where there aren’t many cases, all of which is untrue. TB can spread from ANY person to ANY person and travel makes it a global threat — we all need to step up to end it.
I’m worried about the rise of drug-resistant TB and the lack of commitment to end TB, more so now that I understand just how much this disease is influenced by social factors beyond the individual’s immediate control. It’s as urgent as ever that we address these issues, which is why I’m now involved in advocacy. TB is a global threat — we all need to step up. Community is the force with which to face the challenges and losses of this disease.
My journey with TB and my experiences in ER have brought me renewed gratitude for the time I have left. I’m incredibly grateful to everyone who supported me, including those I’ll never get to meet in person, who bring hope in the fight to end TB — thank you! I encourage everyone who has had an experience with TB to share their story and everyone else to support people with TB by knowing the correct & complete facts; their story is your story — if you’re breathing, it can happen to you.
Key facts taken directly from the World Health Organization’s website:
“ A total of 1.5 million people died from TB in 2018 (including 251 000 people with HIV). Worldwide, TB is one of the top 10 causes of death and the leading cause from a single infectious agent (above HIV/AIDS). In 2018, an estimated 10 million people fell ill with tuberculosis(TB) worldwide. 5.7 million men, 3.2 million women and 1.1 million children. There were cases in all countries and age groups. But TB is curable and preventable. ”