It takes love and empathy — a TB survivor’s story Premium

People need to realise that they should make themselves aware about TB beforehand. They must not wait until it affects them personally.

Health workers, displaying various models on the World Tuberculosis Day in Bengaluru. File photo | Photo Credit: K. Murali Kumar

After six months of irregular back pains, I was diagnosed with tuberculosis (TB). The journey to this diagnosis was a somewhat confusing one. Most doctors that we consulted said that the back pain had to do more with my posture or long hours of travelling. After months of consultations with many doctors, an orthopaedic doctor in Kannur, Kerala finally diagnosed me with spinal TB.

By November 2021, my disease had progressed. Physically, my mobility suffered; I developed paraplegia and was bedridden. Doctors said that if the situation did not improve, the only option left would be to undergo a spinal surgery. Mentally, I was drained, it affected my mental peace. My family was shattered to learn about my health, and only calmed down when the treatment started.

Before I got the TB diagnosis — that is, on November 10 — I would take the usual pain-killers, but in a span of a few months, my mobility reduced even more. I consulted a physiotherapist, but that worsened my situation. My thoracic movements were affected, and I eventually had to undergo a spinal thoracic surgery on December 15.

For the first three months of 2022, I started anti-tubercular treatment (ATT) and I was bedridden with a catheter. My mother helped me use the washroom and fed me through those months. I basically spent that part of my life in bed. When it did not improve, I went into severe paraplegia and had to undergo a spinal surgery, after which I had to stay in bed rest for six months. In April, when I went for a review visit to the Kozhikode Hospital, I took a few steps and tried walking, but my knees were shaking without support and my back ached with even a little exertion. At present, a physiotherapist comes to my house and helps me walk with the help of a walker. I am able to move around the house with the support of the walker.

My medication was intense and it affected the way my body functioned. I would lose my appetite; I’d feel exhausted throughout. I even started having memory lapses from time to time. I just felt weird overall. I was aware what TB could be like because I had worked with TB patients as part of social work through the Tata Institute of Social Sciences, Mumbai in 2019-2020. Although I was aware that treatment would go on for two years, I was not ready for it, and the long duration added to the toll TB had already taken on my mental health.

Fighting stigma

Most of my treatment was in private hospitals because my family felt that even though it cost more, the quality of treatment would be superior as the doctors in private hospitals were more specialised. The food and ambience of these hospitals were decent, hygiene was always maintained, but the staff were just inconsiderate. They did not pay attention to the aspect of my mental health. They would be rude to me if they saw me not wearing my mask; whenever they would clean me, I would feel uncomfortable because of the rough attitude they portrayed, which was perhaps due to the stigmatisation of a disease like TB. There were times I would be lying naked and the staff would be around me. Their approach in dealing with me triggered me mentally.

I am AFAB (Assigned Female at Birth), but I identify as a non-binary person. The medical team decided not to put an implant on my spine after surgery because in the future I might have issues with pregnancy scanning, etc. The medical team decided before my parents or I could even say anything. Misgendering happens because of my appearance and it causes trouble when people hold me, lift me, etc. in hospitals, thinking I am a “boy”. Consent to touch me, help me is almost never sought. All of this is triggering.

I was diagnosed with BPD (borderline personality disorder), PTSD (post-traumatic stress disorder) and MDD (major depressive disorder) before my TB journey. I had been taking medicines (psychiatric) and undergoing therapy (counselling) for years before getting my TB diagnosis. It just worsened after the TB diagnosis, treatment and the whole journey. I had to leave work and quit my UPSC coaching because I couldn’t concentrate and everything triggered my mental health. I am still unemployed.

Also, an update: I recently joined the NGO sector with HTBF (Help the Blind Foundation, Chennai) as a Junior Project Officer. They work in higher education for visually impaired students. I explained my TB story to them as well.

Pillars of support

Fortunately, my family, my partner and my pets were my biggest pillars of support throughout my fight. My family and partner had basic knowledge about TB, and they never made me feel different while I was struggling. They would be with me during my lowest points, and my pets would make me feel so comfortable when I would cuddle them or simply have them around me. When my relatives learnt about this, they did change their approach towards me; they would not allow their children and other family members to come near me.

Tuberculosis is a tough battle. It drains you mentally, physically and emotionally. But one must hang in there. Survivors have shown us that after all this struggle, there will be a peaceful time. Love and empathy will help you sail through. My friends were my support system. People need to realise that they should make themselves aware about TB beforehand, they must not wait until it affects them personally. Taking precautions can prevent a lot of TB cases.

(Aparna Sreeprakash is a Junior Project Officer at Help the Blind Foundation. She is also a TB survivor and an advocate with Survivors Against TB)