Prior to our brushes with TB, we were on our respective career and personal trajectories. When TB hit us, it hit us hard. We were clueless and unprepared. We had no idea where to 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. But life after TB is as glorious as you want it to be. A question we are frequently asked is how does one rebuild life after surviving TB? Here are the lessons we have learned.
The two horrible years of undergoing intensive treatment because of our drug resistant status took our sanities and threatened to take our hearing, liver function and lives. We both lost part of our lungs to TB. We lost track of all the changes our bodies were undergoing. Even now, small everyday activities—walking, running, climbing stairs—are a challenge. We both 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, we began taking small steps towards improving our physical beings. After a dialogue with our doctors, we both began observing daily exercise routines. 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 all have a role to play here.
Apart from the exhaustion of shunting from one doctor and the next, the challenges of diagnosis, treatment and lack of information left us unhappy and drained. As if this wasn’t enough, both of us felt our self-image going down the drain. Talking always helps, so talk about your TB. It will give you the confidence you need to remain afloat.
It’s inevitable that TB will impact you mentally. However, recovering is a process that 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 counseling is critical in seeking closure and 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 self. This, however, should be supported by the community and your family.
Create social connectedness. During our treatment periods, we felt as if we were never a part of society—for it was society which excluded us. Now that we have managed to defeat TB, we understand the importance of integrating our lives with a larger 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 general community around you and the government becomes extremely important. It is vital to accept people who have survived TB. To make this the norm is only possible if large-scale public information campaigns are undertaken by the government to dispel any myths around the disease as well as the survivors of TB. For instance, many communities believe that TB is incurable and that chances of relapse are highest after recovery. This is not true. If one manages to develop and maintain a high immunity, TB cannot impact one’s health further.
We have had to learn to dream about the future again. We feared forging loving relationships owing to our disease status. We feared that we would be rejected. But does that mean one gets disheartened? No. It’s important to capitalize on the opportunities out there. You will have a full life to lead, after TB medication. The world is your oyster.
However, 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 fulfillment 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 oneself buoyant at all times.
When we finally managed to defeat TB, we decided to follow our respective careers. People told us how lucky we were to be alive… but 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 defy these notions. Today, we have not only managed to rebuild our careers, but are also helping other TB 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 that they will come out along with the rest of the contents of our stomachs.
Yes, there is life after TB—as normal or abnormal you want it to be. 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.
Trust us when we say that dying is easier. Defeating TB requires a tough fight. But this is not your battle alone. If TB is to be uprooted, then the government needs to play its part, the policy makers need to play their part, the drug developers need to play their part. Everyone that 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 against TB needs to be fought by us all, not just the healthcare workers and the patients but the community at large. That is exactly what it is, a fight. Not just a personal fight, but a global one.
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Authors:
Dr. Saurabh Rane is an XDR TB survivor, currently working as a management consultant in digital health. He is also a fellow with Survivors Against TB (SATB), a collective of survivors, advocates and experts working on TB and related comorbidities. Deepti Chavan is an MDR TB Survivor Advocate and Fellow, also associated with SATB.