(This is an extract from our latest publication, “Tuberculosis- India’s Ticking Time Bomb – The Survivors’ Manifesto”. The chapter has been co-authored by Deepti [an MDR TB Survivor] and Saurabh [an MDR TB Survivor])
Prior to our brush with TB, we were on our respective trajectories of growth – be it in our careers or in our personal lives. When TB hit us, it hit us hard. We were clueless and unprepared. We had no idea where we could seek care from and how to even start grappling with the situation. Worst of all, our families were affected more than us.
Life after TB is not devoid of challenges. There is no guidance, there is a lot of confusion around complete recovery, relapse and care, post TB. We want to say that there is life after TB. If anything, it is as glorious as you want it to be. So, how does one rebuild life after surviving TB? It’s a question we are frequently asked. Here are some pointers on how survivors can reclaim their lives and how society and the state can help them:
Strengthen the physical being: Owing to our drug resistant statuses, two years of that horrible treatment took our sanities and threatened to take our hearing, liver functions and lives. We lost a part of our respective lungs to TB. We lost track of all the changes our respective bodies were undergoing. Every day is a challenge – walking, running, climbing stairs. We still have issues with digestion as the DR TB medication took a toll on our bodies. It impacted our ability to deal with the pain.However, our diagnoses weren’t the end of the world. We began taking small steps towards improving our physical being. Post a dialogue with our doctors, we began observing an exercise routine. A little bit of stretching and a balanced diet go a long way in nourishing one’s body. This is where post-treatment advice is critically important for survivors. They don’t just need to recover. They need to build strength. The medical community, the state and the family have a role to play here.
Rebuild mental capacities and aspirations: Apart from shunting between one doctor and the next, the challenges of diagnosis, treatment and lack of information left our lives gloomy. As if this wasn’t enough, our respective self-images went down the drain.Talk about your TB. Talking always helps. It will give you the confidence you need to remain afloat. It’s inevitable that TB will impact you mentally. However, the process to recover has to be worked on. You cannot let your life end there. Rather, allow the experience to nourish you with critical life lessons. We learnt ours. We were alone and subdued. It is critical to seek help. Engage with people around you – family, friends, your doctor – whoever you trust.Post- recovery counselling is critical in seeking closure and for the ability to rebuild yourself, mentally. Most importantly, believe in yourself – stay positive. Building a new life after TB is not difficult, all you need is faith in yourself. This, however, should be supported by the community and your family.
Create social connectedness: We felt as if we were never a part of the society – for so it was, with the society which excluded us. Now that we have managed to defeat TB, we understand the importance of integrating our lives with a new world. Of course, it is not easy. There will be people who may sever all ties with you, owing to your former ‘TB status’. But there are also people out there who will accept you wholeheartedly.Here, the role of the community and the government becomes extremely important. As communities, it is vital to accept people who have survived TB. This is only possible if large-scale public information campaigns are undertaken by the government to dispel any myths around TB as well as the survivors. For instance, many communities believe that TB is incurable and the chances of relapse are the highest after recovery. This is not true. If one manages to develop and maintain a high immunity, TB cannot impact anyone.
Create personal life goals: We feared forging loving relationships owing to our diseased status. We feared that we would be rejected. But does that mean one should get disheartened? No, it’s important to rather capitalise on the opportunities out there. You will lead a life without TB medication. The world is your oyster. However, for this, one needs to be self-driven. This is your road which you need to walk alone. Your family will support you, but this is indeed your battle – and yours alone. It is critical to find fulfilment in your personal lives. For instance, Deepti found a loving partner who married her and is a big supporter of her work as a TB advocate. One needs to keep the self buoyant at all times.
Creating career goals: When we finally managed to defeat TB, we decided to follow our respective careers. People told us how lucky we were to be alive, and that there was no point in building our careers again. We should not take risks and play it safe. We were appalled. Do TB survivors not have a right to professional growth? Are we to keep ourselves confined to our homes, just because people don’t believe in our abilities? We decided to forge our way ahead. We decided to defy these notions. Today, we have not only managed to build our careers but are also helping other patients fight TB effectively.
It’s been years since we recovered – and yet, every few days, we remind ourselves that we don’t have to take those pills anymore; that we don’t need to sleep upright tonight; that we don’t have to be close to the toilet after taking the pills anticipating all to come out along with the rest of the contents of our stomachs. Yes, there is life after TB – as normal or abnormal as you want it to be.
Trust us when we say that dying is easier. But defeating TB is heroic. And this is not your battle alone. If TB is to be uprooted, then the government needs to play its part, the policymakers need to play their part, the drug developers need to play their part. Everyone who breathes needs to play their part because we are all at risk. We all play a vital role in this fight and we need to take action. More so, we need to demand action. A significant challenge is the belief that the fight with TB is fought only in hospitals and clinics by doctors and other healthcare workers. While that is an arena where the battle is taking place, it is not the only one. This fight with TB needs to be fought by us all – not just the healthcare workers and the patients, but also the community at large.
It feels like it was a different life. At times, we cannot believe that it happened to us. But then, the scars from our surgeries remind us. They speak of a journey – one of loneliness, pain, tears and finally, salvation. They speak of our road to recovery. Let’s take a moment to just think of all those who did not make it. All those for whom life could not continue. The millions who lost their lives fighting DR TB. All those who are currently fighting DR TB and are losing the battle. All those who will not make it. That is exactly what it is – a fight. Not just a personal fight, but a global one.