Fieldset
TB & Me: "Surviving TB, MDR-TB and the negligent system"

Athira shares her experience and a powerful call for change and solidarity.

Athira and her cat

My name is Athira Elssa Johnson, from the southern part of India, Kerala. I am a one-time intestinal tuberculosis survivor and a drug-resistant tuberculosis patient now, on XDR–TB regimen. I am in the last weeks of my medication and I have no idea how to put this journey in words, but I will do my best to try...

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Athira in 2015
Athira in 2015

In 2015 when I was doing my Bachelor's in Journalism and Mass communication in Punjab, India, I was diagnosed with intestinal tuberculosis. I was on a medication regimen of almost a year and it was cured but it took a great toll on my physical and mental health.

A new diagnosis

In 2018, I was pursuing my Masters in Political Science, in Kerala. There was this persistent cough that won’t go away, the life situations I was in during that time were terrible and I neglected my health for a long time.

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Athira in 2018
Athira at the TB hospital in 2018

Being an OCD sufferer already, my anxiety grew bad, I fell into self-harm, lost my voice, fell ill to a point where I even threw up water, couldn’t have anything.

As my parents and sister were there to help taking me to hospital and  helping me take medical check-ups and tests, one led to another, also considering my medical history related to TB, soon tests were directed on the right track and I was diagnosed with multi-drug-resistant tuberculosis.

Unable to function

I tried to learn about drug-resistant tuberculosis with the resources I had and looked up stories of survivors and patients in the initial days preparing for the medication. The injections and pills were started days after the diagnosis and what it did to my body was unexplainable, I couldn’t function at all.

I dropped my studies and the small job I earned that week before diagnosis.

A part of me had so much hope but the other part didn’t believe it was worth it

Side-effects tired me but I held on to the regimen that was said to be for almost an year. Later on in 2019 the reports came bad, found to be resistant to more drugs and I was put on a longer regimen, the pre-XDR-TB regimen, for two years this time.

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Athira in 2019
Athira in 2019

This meant more doses with injections and pills starting over. The thought of it itself is nauseating, a part of me had so much hope but the other part didn’t believe it was worth it.

Support from my family

My parents and sister helped me a lot to get through. They stayed with me, helped with everything. I was so very disoriented because of the meds, but they tried to learn about what I was going through.

I cannot describe more in words how much of their time and energy was put and still I had breakdowns, guilt, pain, shame. But since the only option was to go on with it, I went on with it and today in 2021, already three years to this medication, I am close to completing the regimen.

It does get better

The experience is horrible, there’s nothing positive about tuberculosis and the unavoidable isolation related to it, but there’s medication, hope and stories that connect us.

Amidst all the hatred and suffering it’s hard to convince ourselves that it will get better, but it does get better.

I understand that it comes with a privilege to even get the diagnosis right, it’s easy for others to come up with advice and try to fill us with magical thinking of toxic positivity throughout this regimen. But you know what you are going through and what you feel is important and valid. So if you are on TB medication; ask for help, demand care. You will get through this and the tb community and stories are here to make us feel less alone too.

Misconceptions

It's also very weird that some people even approach to tell me that :

‘The illness is a mindset’

‘If the meds make your skin get darker why take it?,

'Do not talk about the illness, you can’t get married’

And so on. People say all sorts of things. Some even make sure that they spew hatred. But it’s a fact that survival is possible despite all this. And there’s also going to be so much love that you receive from the right people and they are going to stay.

Everyone's stories are different

Yes tuberculosis is an illness with various interpretations from the history to present, I learn about the same throughout the medication. The romantic metaphors, glorifying the pain of TB sufferers on one side and the stigma on the other was the usual pattern for tuberculosis. The ableism and eugenics is still very alive.

If you cannot relate to someone’s successful survival story do not feel discouraged to adhere to the treatment, I could not relate to most stories of survival too, it’s not our fault, everyone’s stories are different.

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Athira in 2020
Athira in 2020

How the meds act on us is also different. Maybe the side-effects won’t trouble you much, maybe it would. And the medicine induced side-effects put us in mental and physical pain, here we need more love and care and do not feel bad to demand it.

Gas-lighting and stigma

If at all someone should feel shame and guilt that we get TB it should be the governments that made the availability of medicines this hard, monitoring of the side-effects this inefficient, let ableism, medical gaslighting, stigma prevail and let healthcare be unaffordable. So there is this deadly illness on one side and a system that only cares if we produce to capitalism on the other.

Subtle or direct, the stigma always troubles; this is different in various environments. I lost my friends, toxicity from relatives drained my family; I was affected financially , emotionally and physically to a level that we cannot now afford to take anymore of this as positive or as a learning.

Today

I hope the little of what I wrote doesn’t emotionally drain you, but you take this part as well: there was stigma; drug side-effects; losing people- time- education; a mental mess; pain and so on throughout this medication, but I am less nauseous today, my x-ray looks better, the aversion to meds have reduced, I have started writing long write-ups like this that I couldn’t before due to shivering from the meds.

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Athira in 2021
Athira in 2021

I try to walk around with the cats, my routine tests look good, the projectile vomiting has reduced, and while there’s only some more weeks for the regimen to end I am also more anxious and scared, my skin and hair is affected and somedays I don’t care, somedays I do, there is tingling sensation in the feet from the beginning of the medication to now, I cry a lot now too like before, sometimes I fel numb, sometimes I cry over things like studies I could have completed by this time. I feel sad about the way I am treated by some people too and that’s not okay, but you and me on this medication need to keep going. 

Listen with love

And people should know that, there’s a lot that governments are supposed to do. Even if your favorite party is in power, tuberculosis is still here. Tuberculosis is everywhere. People associated with tuberculosis are not treated very nice and there’s no safe space for us to open up about our illness.

There’s a lot that we need to call out.

There’s the dire need of overwhelming the system to give this political attention. These aren’t some inspirational stories to feel good, this is about that vicious TB bacteria in the air that could kill you too and so we are all in this, we are all breathing, not so relieving, but not very tragic if you could include us, realize that the stigma should end, rally up, send solidarity and listen to our stories with love.