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 ER environment 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 I would intermittently back away to the doctors’ room, trying to calm myself. Fatigue made me apprehensive about doing resuscitations; I worried that I wouldn’t have the capacity 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 still remember how dark it felt during this time.
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, 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 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’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 routes 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 mountain hiker and biker, I couldn’t manage 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, trying 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
It was seeing a young, healthy-looking man in his twenties that reminded me to go for an X-ray (“Hey doc, I have this annoying dry cough and I need to get rid of it. I’m really busy at work”); I’d done his X-ray routinely because he’d been coughing for so long and recognized the classical TB picture right away. The alarm bells in my head started up again.
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. “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 flown to Namibia 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 83% is best case scenario.
During the first two weeks after starting treatment I could still infect others and had to be isolated. 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.
After the first two weeks of TB treatment my cough subsided; I started sleeping again and my memory improved. 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.
I don’t want to get TB again. The depressive fatigue was scary – so was working under intense stress without the capacity to do so. I suffered from symptoms of post-traumatic stress during this time. Medical investigations, medications and a barely-there life capacity translated into a big loss.
Although I had knowledge of medicine when I got sick, I still felt scared and isolated. Dalene & Arne’s 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 reminds 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. My journey with TB and my experiences in ER have brought me renewed gratitude for the time I have left.
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 52% and 28% respectively, and now ‘programmatically incurable tuberculosis’ is a reality again. Infection control strategies rely too heavily on personal protection (which is often also neglected due to lack of equipment, naivety or stigma) and not enough on upstream interventions. 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 no.1 killer in South Africa and 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 and all around us, but many people think it’s only found in poor areas or only affects sick people, which is not true. It is estimated that about 80% of the South African population is infected with TB bacteria, which can lie dormant in your body (latent TB) for years before you become ill from it (active TB). Not everyone will become ill, but many will, and delayed diagnoses are common.
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 emergency – we all need to step up. Community is the force with which to face the challenges and losses of this disease.
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 facts – their story is your story; it can happen to you.