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[International Women's Day 2017 special] Emotional support is crucial for TB patients

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Shobha Shukla, CNS (Citizen News Service)

(To mark International Women's Day 2017, CNS presents an exclusive story of courage and inspirtion, based upon an interview with TB survivor and activist Prabha Mahesh)

"I can never forget that day. It is etched in my mind forever. I came back from the laboratory totally devastated and in tears. I had never ever thought even in the wildest of my dreams that a person like me could contract TB. But that was what my reports confirmed.

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I was so distraught that I asked my younger sister to promise to take care of my then 1 year old baby daughter in case I died (which I thought I would)", reminisced Prabha Mahesh, while narrating her traumatic brush with a disease that globally infects more than 10.4 million people and kills 1.8 million of them in a year.

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Prabha, who holds a Masters degree in Psychiatry and Social Work, was working as a superintendent in a government home for mentally challenged children in Mumbai when she was diagnosed with extra pulmonary TB (ETB) 17 years ago. It all began with a swelling in her neck, which she ignored for sometime. But slowly it became a huge lump. Her family physician initially put her on antibiotics but her condition did not improve. After undergoing various investigations, she was eventually diagnosed with ETB.

"I had no clue about going to the public health setup. So I sought treatment in the private sector. Surviving through that 1 year period of medication was a trauma. The first shock was that I was told by my doctor that I had to stay away from my baby till I completed my treatment. Also there was no structured way for me to take observed doses of medicines (like it is in the public health system). I must have popped up some drug twice, and omitted another altogether at times, for all that I know. More than the disease, I dreaded the separation from my baby. TB deprived me of my motherhood for one whole year and shattered me mentally. The only drive that kept me going was my baby - I had to live for her and hence complete my treatment. I am a strict vegetarian, but the doctor said I must consume eggs. It was a difficult fight within myself, but I ate them for the sake of my child. I did everything I was told to do to get cured just because of my baby" said Prabha to CNS (Citizen News Service).

Discrimination and self stigma

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Prabha feels that there was, and still is, a lot of stigma attached with TB. Her treating doctor himself advised her repeatedly to keep her disease a secret from her friends and colleagues. So she just kept quiet and did not tell anyone. But when she submitted a medical certificate for leave, her colleagues came to know that she was suffering from TB. Till then Prabha had thought that her co workers were fairly sensitized people. But it was not so for TB. "They started avoiding my company and would not have lunch with me. This segregation at my workplace made me so distraught that for a few days I did not eat my medicines".

But Prabha was one of the few fortunate women to have a lot of family support. "My husband, parents and siblings all stood by me throughout those difficult times. My husband was a great support. He would segregate my medicines and staple together the required dosage to be taken at a time, so that I did not over or under eat any medicine. Family support is very crucial, because then you can damn the world. If the family's psychological support is not there, no amount of outside support can help. Adherence is the key word and it is the family who can take the patient to complete the treatment journey. I was a psychologist; yet none of my coping mechanisms worked. Just imagine the plight of those patients who have no treatment literacy and other support", she said.

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Citizen News Service (CNS) specializes in in-depth and rights-based, health and science journalism. For more information, please contact: www.citizen-news.org or @cns_health or www.facebook.com/cns.page

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