Overcoming Illness and Stigma: Handaa Enkh-Amgalan’s Journey
Handaa Enkh-Amgalan is the author of Stigmatized, a creative non-fiction book about a Mongolian girl’s fight with stigma and illness and how she overcame obstacles with resilience, hard work, and a change in perspective.
I first met Handaa Enkh-Amgalan when she joined my team as an intern at a large nonprofit, and she immediately shined out to me as a curious, hard-working and whip-smart communicator. I never knew about Handaa’s TB journey at the time. As she steps out to share more of her story, I hope you’ll get to know this impressive woman along with me, and I hope her story also inspires your own healing and self-discovery.
What first inspired you to sit down and write your book?
When I came back to Mongolia for a visit, I went to the TB health clinic that I was being treated at 10 years ago. I just wanted to check out that place to refresh my memories, feelings I was experiencing at that time, and catch up with my former TB physician. Initially, I had thought that the place would bring back really dark memories and make me feel sad, but it actually inspired me to do something about TB and the attached stigma. TB was part of my story and it actually helped me become much stronger, so I needed to give something back to the cause. Then I spoke with my physician and a few other TB researchers, and I found out that I would be actually the first Mongolian ever to publicly reveal her TB story — this was absolutely shocking to me! Mongolia reports over 4,000 official numbers of TB cases, but not even a single person shared their story. The reason why is simple -- it is because of social stigma. It is kind of like a catch-22 vicious cycle — when affected communities want to speak out, there is the stigma and discrimination, pushing survivors and patients into silence, which then further nourishes the stigma.. I would say that there were many moments that added up to this decision of me sitting down and writing this book, but the biggest spark occurred when I learned that I would be the first to publicly share my story. Somebody needs to break the silence about this and trailblaze a path for others to raise their voices as well. So I thought to myself — why cannot that be me?
Tell us a little about your experience with facing stigma around your illness. How did that feel, and how were you treated?
The very first stigma I experienced was from a close circle of friends and family members whose reactions were just pure shock and they immediately suggested that I should hide about it. For example, my aunt called me up and said that "Handaa, do not worry — I am not going to tell anyone." I did not know why at that time. When my mother told her sister who was a practicing nurse at that time, her sister called my mother "incompetent mother." That is when my family knew that we had to hide this disease because it would harm my family's reputation and ostracize us from social ties (in Mongolia, networks of relatives and the associated interdependency are very strong). This made me feel really guilty, ashamed of myself for getting TB, and isolated. I could not stand the idea of bringing stigma to my parents and my family. So, we collectively decided to hide it. We told people that I was visiting China for a few months, and I packed up my stuff to stay in the TB health clinic for about 2 months.Then I started experiencing stigma from some medical professionals — how they treated patients was based on blame culture, exaggerated levels of fear of catching TB even though everyone was wearing masks at that time. All these social stigma were getting to me eventually and changing who I was — the bubbly, outgoing girl turned into someone else who preferred to be alone, not confident, and shy. The emotional toll it took on me was the hardest part of overcoming this disease and the attached stigma. It took me a decade to finally feel comfortable talking about it and accepting that it was actually part of my story. For a long time, I had part of my identity stolen by society and I had lost control of who I was. I finally decided that I could no longer allow that.
“...The biggest spark occurred when I learned that I would be the first to publicly share my story. Somebody needs to break the silence about this and trail-blaze a path for others to raise their voices as well. ”
When do you tend to experience a state of "flow" when you are in the zone and the world sort of "disappears" momentarily?
I started seeing myself more of a social entrepreneur and activist these days because that is where my passion, skills, and personal voice all overlap. The flow you described is something I experience when I start something from scratch to build it out, partner with like-minded people who care about similar social causes, organize activities to make a social impact, and inspire others to do the same. But if you are referring to more specific moments when I experience the "flow," it is when I put on my favorite music in my headphones and start typing up on my laptop, planning my work, personal initiatives aka side projects, and organizing things. I also love having coffee conversations with people who share similar interests and connect with me on a deeper level to have meaningful, judgement-free chats.
What advice would you give someone who has faced negative treatment due to their own condition or situation?
If anyone who has faced or going through stigmatized challenges reading this piece, I hope that you take away only one key message — the lesson of embracing every component of your identity, even the stigmatized and hidden parts. I know it sounds cliche, but honestly this is where the power lies in — being comfortable with who you are. The experiences you went through as a patient or survivor is still a critical part of your identity just like special occasions you celebrate in life from graduating, getting married, and giving birth. All these experiences and the things you learned along the way make who you are. Why are we dismissing parts of what we experienced just because society deems it dark or negative? It loops us back into the stigma — the fear of being discriminated against because of our struggles. This is what is holding us back from getting rid of this toxic culture. But if we collectively share our voices, that changes the existing narrative to a state where people openly talk about taboo topics, feel comfortable hearing about stigmatized diseases and challenges, and treat everyone who went through these struggles as equal parts of society. In order to make this happen, we, as survivors, need to break the silence because when we start speaking out, it humanizes these challenges and de-stigmatizes them.
“Why are we dismissing parts of what we experienced just because society deems it dark or negative? It loops us back into the stigma — the fear of being discriminated against because of our struggles. ”
Can you talk at all about the parallels you've shared with regard to COVID-19 stigma and your own experience with TB?
Unfortunately, COVID-19 has brought some level of stigma based on race, disease status, chronic conditions, as well as exaggerated notions of fear. There are a few alignments that are key: 1) we, as humans, unfortunately tend to immediately find someone/some place/ some country/something to blame for the cause of challenges instead of thinking about finding solutions and create these false associations/assumptions/stereotypes in our minds which then influence our future actions and decisions; 2) we see infected individuals as carriers of diseases/virus/bacteria rather than humans, which stigmatizes people; 3) stigma is sometimes institutionalized by government actions and policies (whether it is intentional or unintentional — if unintentional, decisions are based on toxic cultural and social norms and practices); 4) vulnerable communities are hit the hardest.
One good thing about COVID-19 is that it is normalizing the practice of wearing a mask. During my time when I was ill with TB, wearing a mask used to trigger stigma and discrimination.
What is your favorite form of self care currently?
Honestly, I have recently been able to learn the power of self-care. In the past when I was struggling with social stigma and self-stigma, I just never really focused on myself. I mostly cared about trying hard to fit into a social group or community rather than truly being myself, and I had mistakenly thought that it was part of me being a foreigner in the United States that I had to change who I was in order to adjust to the local culture. Ever since I started sharing about my TB story, I realized that I did not have to change myself to fit into communities. So in a way, sharing my story through this book has been very liberating and like a therapy to me in the form of self-care — it allowed me to articulate, process, and make sense of my previous experiences as a TB patient and survivor. Another self-care project I took on was to achieve my fitness goal in a healthy way. This year, I have lost 28 pounds by exercising regularly, walking a lot, and doing some yoga. I hope to get my fitness trainer certificate some day to help other women and girls achieve their fitness goals as well.
How can people learn more about your project, read the book and show their support?
My book is now available for pre-ordering from anywhere in the world. You can learn more and support it here.
I have currently reached my initial target of securing pre-orders to publish my book in softcover. However, 30 more pre-orders will allow me to create a hardcover edition and contribute the presale profits to a nonprofit that fights TB and the associated stigma. My presale campaign will end on December 19!
It is really my dream come true, and if I publish, I will be only the fourth Mongolian ever to publish on Amazon! Representation matters, right? I hope you will support the campaign by pre-ordering my book and joining my author community! The link I shared above also includes a detailed summary of my book, along with a brief 3-minute video that describes why I wrote the book and what it is about. Please check it out!