A conversation with Handaa about stigma, self-discovery and perspective

Hi friends! Happy Friday.

I know it's not my usual day to be writing you, but earlier this week I also mixed up the eclipse and the solstice, so let's just say dates have been a struggle.

I have been in an end-of-year work crunch — while also recognizing that working for myself means *I* am the one who has to decide and pay myself when I need a break. This has been a fascinating, empowering paradigm shifter. (Ultimately, when I reach an inflection point where I have to choose between my creative outlets and sleep, I remember my self-care pyramid, and I choose sleep.)

This used to bug me, missing a day. But I no longer feel such an intense pull toward perfectionism. Especially as we round the corner into the new year, I hope that you continue to give yourself grace. This has been a very hard year. You don't have to get it all done, or do it all well. You're alive, you're making good decisions and the people in your life know that you love them. That's all that matters.

I'm doing a lot of work, thinking and planning for this newsletter's future. 2019-2020 gave me some space to experiment. I've learned some things that I have loved, and some offerings that ya'll love too. I've also learned what wasn't working. It is equally vulnerable for me to talk about my shortcomings as it is to acknowledge how I've made an impact. Yet both are important for us to do. All the while, I feel myself shifting into a new sense of self trust. Lastly, if you're reading this, I hope you know how much I appreciate you being here.

One thing I have loved is interviewing people and that's what we have today! I spoke with Handaa Enkh-Amgalan, the author of new book Stigmatized, a work of creative non-fiction about her life fighting Tuberculosis in her home country of Mongolia, as well as the stigma attached. I think stigma is just another thing we use to create barriers between each other, and in that sense, overcoming it is the ultimate act of yoga. I met Handaa first when she was my intern. She was outstanding, eager to learn and quick to turn what she learned into entirely new solutions. I'm so delighted that she is sharing her story, which I hope that you can one day read, and support if you are able. I know I can't wait to myself!

Read on for more of that, and I'll be in touch soon. Have a safe and happy holidays!

Read the full interview with Handaa

Interview with Handaa, author of Stigmatized

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 trail-blaze a path for others to raise their voices as well. So I thought to myself — why cannot that be me?

"Somebody needs to break the silence about this and trail-blaze a path for others to raise their voices as well."

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.

"Representation matters, right?"

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 tomorrow, 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!

If you know anyone who has ever faced stigma in their own life, or struggled to come out about something due to stigma, forward this newsletter along.

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