You and I breathe the same air and it's not romantic

-Meaningless metaphors, apathy and the hate towards the TB community needs to stop-

Hailing from the southern part of India- Kerala where healthcare is acclaimed to be far better in all aspects compared to other parts of India, it was still hard for me to cope with tuberculosis. Sadly, the world isn’t aware of drug-resistant tuberculosis, but a large part of the TB community is dying of the same.  TB is caused by Mycobacterium tuberculosis that is inhaled via air and Drug-resistant TB is caused by TB bacteria that are resistant to at least one first-line anti-TB drug. In short, just it is inhaling of bacteria in the air affects the human lungs (also other parts of the body) like other infectious illnesses. But being a TB and DR TB survivor, I can cite the needs of why you should be informed about Drug-resistant tuberculosis, especially when you were intentionally or unintentionally ready to take notes on Covid-19. 

The stats by WHO show tuberculosis as world's deadliest illness, which is obvious as I still wake up to notifications and messages of my fellow TB patients’ death, misdiagnos or a severe dose gone wrong. In 2015 when I was doing my Bachelor's in Journalism and Mass Communication, in Punjab, India, I was diagnosed with an intestinal tuberculosis-medication regimen of almost a year cured me but also took a great toll on my physical and mental health. In 2018 while pursuing Masters in Political Science, in Kerala. There was this persistent cough that won’t go away. Being an Obsessive-Compulsive Disorder sufferer already, my anxiety grew bad, fell into self-harm, lost my voice, fell ill to a point where I even threw up water so food intake was impossible. 

The Drug resistant bacteria are freakishly strong, the medication regimen is thereby harder. After the drug resistant TB diagnosis my day started with 15-25 tablets following painful daily injections and side effects from the doses. It got worse when in 2019 I was found to be resistant to more drugs thereby a longer regimen- the pre-XDR-TB regimen, of two years. When you hear TB stories and they say ‘loss of years to this illness,’ it is no joke. It is a long-term isolation that differs from regimen to regimen and how your body reacts to it. In 2021 I was free of Tuberculosis, but post my TB medication also the stigma and apathy towards me and my community is still harmful and upsetting.

 The stigma is harder than the illness, from unsolicited comments about side effects, for instance- the medicines affect skin, I have got comments like “Why take the meds if it makes your face darker” from random people. And the only time people saw me was when I stepped out of the isolation room to get daily injections. 

Accessibility and availability of meds and regimen follow-up is important for TB patients, which was not possible during the Covid, as tb communities were put back in the line.  TB medication side effects range from projectile vomiting to permanent disabilities. Medical discrimination towards TB patients is on the rise in the medical community itself. I remember being asked repeatedly while in the audiometry room for an ear check-up, “How did you get these bacteria, from where, and who? '' from the medical staff itself. 

The system will stand with you firmly to keep TB a secret, even when they aren't equipped to give us proper medical care. Another medical staff told me, “You don't have to talk about your illness especially in your academic circles as that will affect opportunities”. The healthcare system is inherently ableist. Medical discrimination and eugenics are very alive, this is why during the Covid time- the TB community, chronically ill community, and disability community were confined to “the already ill” whose life is already at risk, and the data of their deaths weren’t taken vital as the non-disabled. 

It is strange how metaphors and euphemisms are bestowed upon communities along with hate, for eg: medication success stories are used as inspiration porn for the privileged and non-disabled. It reminds me of the time I was hailed as selfless and my sacrifice was appreciated when I dropped out of college in fear of contagion. Instead of giving me access to online classes that would help me continue my education, I was used as mere motivational content to comfort the non-disabled. 

 Stigma towards TB patients starts right from the very dangerous-innocent question “Does tuberculosis still exist?”. This is the question that would keep away the information that we have been using the same old BCG TB vaccine for the last 100 years. When TB survivors Nandita Venkatesh- India and Phumeza Tisile- South Africa filed petition against the big pharma company J&J against over pricing of life saving TB drugs , It was a powerful moment in the history of TB community .Nandita had lost her hearing due to the injections so does Phumeza, and we were all on the same medication regimen, so when one say “ our healthcare is  advanced to treat TB” .At what cost? 

TB patients are subject to compulsory researching, I remember franticly researching on medicine details to check if I am put on the right medication. Isolation, quarantine, and masks are in the common talks today, but not until Covid-(2019) when TB patients like me were stared at for masking up. It shouldn’t take a global pandemic and a health crisis to understand that TB community deserves better. 

There’s medication, hope, and stories that connect and keep the community together, it creates a safe space for patients to demand care, the free medication in most countries and the nutrition kit ar mostly not taken into full advantage due to the shame of coming out, this is why TB talks are important. Survival is possible but there’s a lot more that governments are supposed to do. We witnessed how governments can “mass educate” on any health crisis, Covid is an example. Even if your favorite party is in power, infectious illnesses are still here. There’s a lot that we need to call out as there is a dire need of overwhelming the system to give this political attention. 

This is about the TB community that involves- patients, survivors, undiagnosed, misdiagnosed, and all associated to TB. Bacteria doesn’t have a moral compass it creeps everywhere that is why this is definitely about you too.