139 days of isolation: What it's like living with Tuberculosis

On Thursday, April 25th, 2013 I was informed that I had tested positive for Multi-Drug Resistant Tuberculosis (MDR TB), an infectious deadly lung disease that kills approximately 1.5 million people every year (Center for Disease Control and Prevention). The death rates in some countries around the world are staggering. This is sometimes difficult to process but I try to remind myself that I am no better and that I am no more deserving of life than those who die from the disease. I am extremely privileged and lucky to say that I did not have to be concerned about death because of my extraordinary access to health care. I understand in many ways life itself can be a privilege. Prior to diagnosis, I had been experiencing chest pain, shortness of breath, a sore throat and fatigue but the side effects from the medication were much more harsh and challenging. With treatment consisting of such a rigorous regimen of many drugs, I’ve experienced an unpleasant variety of side effects from nausea, fatigue, restlessness, anxiety, loss of hearing, temporary impairment of vision, peripheral neuropathy in my feet, and loss of appetite. I’m pleased to say that most of these issues have subsided.

“To TB patients... know that you are strong and resilient.”

I remained in isolation for 139 days over the summer of 2013. I was able to spend time with family and friends during this time if I was outside. TB is a communicable disease but there are many misconceptions about TB because of the lack of education and awareness in our culture (Center for Disease Control and Prevention). With the movement of free flowing air and by keeping a healthy distance/wearing a mask, it was safe to do so. TB is a difficult disease to overcome because of the stigma that exists. I imagine there are many people who feel extremely isolated and fear how they will be perceived by others if they share about their illness. There are people who don’t feel they have the necessary support to continue the rigorous treatment. To TB patients, I share my story in the effort to let you know that you are strong and resilient. If you ever need someone to chat with, please email me at tenzinkunor@gmail.com. It would be my pleasure to support you in your recovery. Disease is part of the human condition. Always has been and always will be. I think it’s important to understand that the enemy is the disease. Not the person who is the victim of it. I think it’s extremely dehumanizing and deplorable how we treat people with certain diseases. Although, my father and brother both had MDR-TB, I haven’t heard too many patient/survivor stories about TB. Last month when I attended a survivor training session at the National TB Conference, I had the wonderful opportunity to connect with fourteen other TB survivors which was super fascinating. After hearing stories from survivors, there were multiple themes that surfaced. One thing I’ve given some more thought is the mental health and wellness of TB patients. It certainly appears that many TB patients suffer from anxiety and depression. Although, medication can be partially responsible for it, isolation is most definitely another contributor. Not feeling connected to others and the rest of the world can be damaging to one’s health and wellbeing. In addition to these two contributors, the stigma that surrounds TB, infectious disease, and other illnesses also creates challenges. It can be extremely dehumanizing to feel the stigmatization of your lived experiences and that your literal breath is unwelcomed and deemed harmful to others. The thing that makes you most human and alive - your breath - is not desired in this world. A poem by the brilliant Nayyirah Waheed makes me think more about that, “a friend. is someone who supports your breath.” About how my support system, that consisted of family and friends, were always the ones who supported my breath. And made me feel alive. Always.

“The enemy is the disease. Not the person who is the victim of it.”

Every time I reflect on my experience with TB I, without hesitation, think about the wonderful people in my life and feel a great sense of gratitude. My loved ones have relentlessly supported me and have always, always tried to shield and comfort me from struggle and suffering. I am truly grateful for that. TB has made me a more grateful and gracious person. And I honestly think TB has also made me a better person in many ways (I know this comes from an extremely privileged set of circumstances). At the same time, I don’t want the stigma to limit the importance and significance this illness has had in on my life and my identity. Moving forward, let’s share our stories. It is from there we begin to liberate ourselves and envision a better, more social just world - one that is worth tirelessly fighting for. Let’s advocate for better diagnostics, treatment, and prevention, and let’s do this all while considering how harmful stigmatization of TB, other illnesses, and disabilities can be. The stigma that exists surrounding TB is the key component in the illnesses’ failure to foster a community of patients/survivors. While TB has become the leading infectious killer and takes approximately 4,400 lives daily (Center for Disease Control and Prevention), there fails to exist a strong and sustainable movement that organizes people to take action and advocate for our communities, and for a better world. That can certainly change. The arduous work that many survivors and organizations are doing makes me believe. And I feel good about that.

This post is part of the ‘A Look At The Isolation of Airborne Cancer’ series produced by The Huffington Post for World TB Day. This series will look at the devastating issues surrounding tuberculosis, the number one infectious killer. To follow the conversation on Twitter, view #WorldTBDay.

#TB #Tuberculosis #Survivors #TBSurvivor #Advocacy #Advocate #weareTB