Tenzin Kunor’s story: my personal experience with tuberculosis

Blog 30 Nov 2021
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Tenzin Kunor

On International Men’s Day on 19 November 2021, Tenzin Kunor from the WHO Civil Society Task Force on TB and We are TBopened a webinar on Enabling a Gender-sensitive Response to End TB. The webinar was convened by The World Health Organization (WHO) and the Stop TB Partnership along with the global health research programme – Leaving no-one behind: transforming Gendered pathways to Health for TB (LIGHT) and the Social Sciences and Health Innovations For Tuberculosis (SSHIFTB) virtual centre. The event brought together a distinguished line up of speakers including WHO and Stop TB leadership, researchers, programme implementers and foremost those affected by TB and civil society– all who wanted to raise awareness and accelerate action to enable, develop and implement gender-sensitive approaches to end TB. Here is his story.

Thank you for this opportunity to share my personal experience with TB on International Men’s Day and the opportunity to talk about the importance of gender equity. My name is Tenzin Kunor and I serve as a member of the WHO CSTF on TB and We Are TB, a TB advocacy and survivor support organisation in the United States. 

I want to begin by sharing that in my family of 4, which consists of my mom, my dad, my brother, and I, all three men are survivors of MDR-TB. And my mother who is undoubtedly the strongest among us has cared for all of us during our worst days. Doing her very best to be all things for all people, something that is oftentimes unfairly expected from women in many societies. Despite TB having such an impact on my family, growing up I actually knew very little about TB. TB in many ways is about loss. A loss of health when you struggle to have a pain-free breath. A loss of relationships because of stigma, shame, and fear. A loss of a future that was planned, possibilities that disappear. And although generally preventable and curable, sometimes, and too often, a loss of life. 

Kevin Kling, a storyteller and playwright, in his poem called Tickled Pink, writes, “When you’re born into loss, you grow from it. But when you experience loss later in life, you grow toward it.”

And ever since my own experience with TB, I’ve felt compelled to ask questions I previously hadn’t had the courage to ask and felt compelled to grow towards this loss. My brother who typically doesn’t reveal much, once shared with me that he felt depressed during treatment particularly throughout isolation but never shared that during those times. My dad after recently immigrating to the United States was diagnosed with TB had his own struggles with stigma during a time of transition but never told a soul about his hardships. 

When multiple family members have endured TB, you get to inherit the relationships, which fortunately for me were very positive. These nurses who were doing my directly observed treatment had been in my home before. They asked about how my day was going, what I’m looking forward to, what I was studying, and with consistency, sincerity, and care, asked how my mental health was. They sympathized with my pain and offered to be a compassionate witness to it. With the privilege of proper nutrition, financial stability, and support from loved ones, the most important part of my care was the priceless interactions and the warmth of my care providers.

So, when I told my nurses and doctor that I’m incredibly nauseous and this medication feels intolerable, that the neuropathy in my feet is unbearable, that my vision is deteriorating and I’m scared, or I’m dealing with some anxiety I’ve never experienced before, they truly listened with concern and did their very best to explore other options for my regimen. I’ve wondered if my experience would’ve been the same if I were a woman or a trans or non-binary person? I’ve heard stories from survivors who are women sharing how they haven’t always felt heard - their concerns being dismissed and not taken seriously. 

Additionally, we need to think beyond a gender binary and dismantle the stereotypes dehumanizing people of all genders essentially rooted in the belief that women, trans, and non-binary people are inferior. We must engage in the difficult work of addressing stereotypes, gender norms that are harmful. For example, being sick doesn’t make you less of a man. Asking for help doesn’t make you less of a man. Not being able to provide for your family doesn’t make you less of a man. We must engage in work to explore healthy masculinity which would strengthen access to care and embrace feminism as something necessary for the liberation of all people including men. At the root of various issues are societal pressures for men to be, and perform, their gender identity in a certain way. Expectations that manifest in family dynamics, gender roles, cultural norms, which shape our societies and our lives. 

Research has highlighted the ways in which men, due to certain risk factors, at large, have been more affected by TB. Additionally, access to care and health services and early detection efforts are an issue and these challenges can be linked to gender. 

To truly understand the needs of those affected we must consider and acknowledge the social identities people hold and the systems of privilege and oppression they navigate that impact their experience. There is great value in identifying how gender impacts TB and in acknowledging that gender-based oppression of women, trans and non-binary people endured on both an individual level but also a systemic level, have implications for all people, including men. Not only do we need gender-sensitive and identity-conscious approaches to address TB inequities and injustices, but they must also be culturally and community relevant, as the systems of privilege and oppression based on gender manifest differently in different contexts. With that said, it is important and necessary to engage affected community and civil society as they are experts with invaluable insight to tailor interventions with intentionality and identity-consciousness and to work towards a world where one’s gender does not impact their health outcomes.

Thank you for reading my story.