Not a day goes by that Alison (not her real name) doesn’t think about her experience with tuberculosis (TB), which she contracted a few years ago. While the experience was traumatising, she is grateful to be cured.
Alison is lucky enough to be living in Malaysia, where she received the best treatment possible. Millions are not so fortunate.
When she was tested positive, there was the possibility she needed to have part of her lung removed. In the end, however, she was treated without surgery as her medications were able to eradicate the bacteria completely.
The six months she spent in recovery were a struggle. She developed all the main symptoms, including night sweats, persistent coughs, and fever. She was also tired all the time, and her lack of appetite led to weight loss.
Initially, Alison was hesitant to open up about having the world’s most infectious disease, but she eventually grew determined not to be afraid of being judged by those who might avoid her out of fear of contracting the illness.
Stigma, she believes, is one of the main reasons TB is still very much prevalent throughout the world, and this is something she hopes to change in her own small way.
Surprising discoveries
In her journey of talking about TB with those in her community, Alison was surprised to learn many still do not know what the disease is all about, or even that it is still prevalent in Malaysia.
Upon reflection, she shouldn’t have been shocked, given that she, herself, had been naive enough to think it had mostly been eradicated.
This is a common misconception for a number of reasons. The first, again, pertains to the stigma associated with infectious diseases: no one speaks about them openly.
Secondly, the number of people who contract active TB is relatively low in developed nations, compared with the more vulnerable developing ones. Consequently, the “what we can’t see does not affect us” attitude becomes apparent.
In truth, a third of the world’s population, approximately 2.5 billion people, are infected with inactive or active TB.
In Malaysia, with around 25,000 cases of the disease recorded nationally in 2018 and an estimated incidence rate of 92 cases per 100,000 people, many who have TB still lack awareness of its basic symptoms. Many more don’t even know that diagnosis and treatment are provided for free by the government.
Alison wishes to contribute to and focus on the human impact of the disease, something she feels is often forgotten among the facts and statistics. The figures represent real people in real communities. These are folks with actual families, children, brothers, sisters, and friends.
Back to normal
After 12 months, Alison’s symptoms were gone and she was able to return to her normal life. It was crucial that she completed her course of medication to prevent the emergence of antibiotic-resistant bacteria.
She regained her appetite and was able to get back to her physical activities with no issues.
Alison feels she is privileged to be able to share her story. By opening up the conversation around TB, she aims to help reduce the stigma by demonstrating that anyone can get this disease; but, with appropriate treatment by specialists, a complete recovery is achievable.
TELEME Healing Life Stories is a collection of inspirational stories of how ordinary people triumph over their health conditions and recover to lead a healthier life. Email [email protected] to share your story.
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