Silence. Shame. Stigma.
These are the first three words that come to my mind when I attempt to describe my experience as a former TB patient. Growing up in Mongolia, I knew that TB was a taboo topic that people oftentimes felt uncomfortable talking about, and this social norm still continues to this date. But I could no longer be a part of this. Somebody needs to break the silence to encourage more conversations about difficult topics and find solutions. Otherwise, such silence around stigmatized diseases and challenges is costing millions of human lives around the world. And this is why, I decided to tell my story to humanize and destigmatize TB. I firmly believe that it takes one voice to create a ripple effect of social change.
When I was a teenager, I was diagnosed with TB and I was encouraged to hide my disease due to fears of social stigma and discrimination. Hiding such an important part of my life created an internal struggle of questioning my own identity. However, living abroad pursuing higher education, exploring new perspectives, and befriending individuals from different backgrounds made me realize that being a TB survivor was part of my identity and I needed to embrace it. It took me almost a decade to realize that it is not something to hide, feel ashamed of, or be silent about. By remaining silent, I did not know then that I was unconsciously contributing to the root cause of the problem.
According to the World Health Organization, as of 2018, 1.8 billion people were estimated to have been infected with TB.
Approximately 10 million people fell ill, followed by 1.5 million deaths due to TB in 2018. Over the years, TB has become more difficult to treat with available medications – resulting in over half a million cases of TB resistant to drugs in 2018. This means that the disease is becoming more dangerous and hard to treat. On top of that, TB is a highly stigmatized disease in countries where the disease is prevalent, which makes it even harder to overcome as an individual, as a family, as a society, and as an entire world.
The TB stigmatization is caused by commonly associated factors that can themselves create stigma: HIV, poverty, drug and alcohol abuse, homelessness, a history of prison and refugee status. According to the National Center for Biotechnology Information, the TB stigma results in a sense of shame or guilt, leading to self-isolation as TB-infected individuals internalize their community’s negative judgments about the disease. The TB stigma can lead to mental health challenges where research shows that the prevalence of depression and anxiety disorders among people with TB is estimated to be between 40% and 70%. Such stigma, the fear of discrimination, and the associated impacts can cause TB patients to hide their disease status, delay seeking help, and become reluctant to adhere to their course of treatment. This perpetuates the chain of contagion, permanent mental trauma, and eventually TB-related death toll around many parts of the world, especially in developing countries. While such TB stigma exists, people do not understand this intangible yet very real issue, the magnitude of it, and the associated human cost imposed by the negative consequences of stigma on patients, their families and friends, and the whole society. This lack of understanding is related to the fact that people avoid talking about TB, as they find the disease scary. Such silence and the stereotype-based fears nourish this vicious cycle of social stigma. To put an end to this issue, we need more stories from those with the lived experiences to come out and change the toxic norms and practices. Being vulnerable and sharing our personal story is a difficult thing to do, but when we do, we push past our fear of rejection to present our truest selves, while also helping inspire others and making a difference in society.
As someone who went through the journey from being a stigmatized TB patient to an empowered survivor, I shared my story through the book Stigmatized with the hopes that people who are battling with TB or other stigmatized diseases and challenges feel empowered to raise their voice and join me in the fight to break the silence and remove stigma together. I also hope that policy makers, civil society, and international organizations step up their efforts to not only treat TB medically, but also tackle the attached stigma to end TB. We are all humans and all go through storms; nobody needs to be defined and stigmatized by their struggles. I hope that my book helps you understand that your struggle is your story and embracing every component of who you are, even the hidden parts, will help you turn your struggles into your strengths. I hope you enjoy reading my book as much as I enjoyed writing.
Handaa Enkh-Amgalan’s book, Stigmatized, is available for preorder now!
In this book, she intertwined her journey battling advanced stage Tuberculosis (TB) and the social stigma attached to it. Stigmatized features stories of growing up in a nomadic country like Mongolia, learning a foreign language, moving to the United States for higher education at the age of 17 on her own, and exploring cultural diversity in various parts of the world. Stigmatized is a creative non-fiction book that speaks to anyone looking for inspiring stories about the ups and downs of an ordinary journey and how the power of grit and vulnerability drives empowerment. You will love this book if you are someone who enjoys personal storytelling as a way to kickstart your own self-reflection.