Fighting TB requires empowered patients

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I went to one doctor after another. At first I went where I was referred. Later I undertook my own search for a doctor who would be able to help. They did not tell me about the disease or its progression. I felt I just had to trust them—like God; you never see her but you have to believe. Everyone promised a cure and would experiment with my medication, but I didn’t get better. No one told me about the horrific side effects; nobody directed me to any resources that would help. I felt lost, angry, and helpless. After a year my doctor told me that I had multidrug resistant TB and required surgery.

My family and I had no clue what that meant and no other options were discussed. A decade later I wonder why no doctor ever advised me to get a drug susceptibility test earlier, instead of just changing medicines.

Post-surgery I had to continue with medicines and injections, but my condition deteriorated. Desperate, I started surfing the net to find a doctor who could help me. Three years after my first diagnosis, I found one in the UK who referred me to a specialist in Mumbai.

Treatment beyond drugs or surgery

Under this new doctor’s care I realised for the first time that a patient could ask questions, and could frankly share their apprehensions. I was used to doctors rejecting what I said; when I told them that I was suffering from a side effect, they just dismissed it saying that nothing of that sort happens, that it was just in my mind. Because of this I became hesitant to voice my concerns to any doctor because I knew I would get the same answer.

But with the new doctor it was different. He told me that he understood how difficult it is to consume so many medications and that I was being very brave. He explained to me that my case was difficult, but he motivated me at the same time, reassuring me that I could fight it.

When a doctor says that he has faith in his patients and understands their struggle it gives them confidence; it is part of good treatment.

By now my health had become much worse and I required further surgery, which was potentially life threatening. Eventually I found a surgeon who, although he believed I would most likely die on the operating table, was willing to try. In fact, I was out of the intensive care unit the next day—faith, miracles, who knows?

Survivors do wonder

Today I am cured of TB but it took six years of medicines, 400 injections, and two major surgeries.

TB is as much a mental fight as it is a physical one. As the doctor you are my most trustworthy ally and you need to know that until you empower me I will either give up this fight or lose. You need to listen to me when I say a medicine isn’t working or that I am experiencing side effects. If I have a disease like TB or HIV, you need to test me for drug resistance up front, not change medicines without offering a good reason. Perhaps if my doctors had done the test earlier, my lung could have been saved.