(For World Tuberculosis Day on 24 March, The Quint is posting a series of articles to raise awareness about the disease, including actions to address stigma, discrimination, marginalisation and overcome barriers to access care.)
When Saher was diagnosed with TB, she was neither frightened nor worried.
“We are a family of resilient people. We are used to taking a problem by the horns and resolving it,” she says in a matter-of-fact way. Yet, the battle against TB was filled with challenges she had not anticipated.
Saher was abroad on a business trip when she began coughing.
“Everyone said it’s nothing but I felt I was coughing my lungs out,” she says. Yet, it never crossed her mind or anyone else’s that it could be TB. “It’s not like we don’t know about TB but it’s so far away from our thought process,” she says frankly.
She came back to India and went to an ENT Specialist, who diagnosed her with hyper-acidity.
“Apparently, I didn’t eat enough so I was coughing endlessly. I was given a lot of antacids and other medicines,” she recalls.
But the medicines only had marginal impact. Several weeks into treatment and she saw no significant change in her situation.
The coughing became quite extreme and it became difficult to talk sometimes.
I felt like I had no energy at all. It was accompanied by escalating weight loss. Everyday, I had to push myself to go to work.
The Condescension Attached to TB
In desperation, she decided to change her ENT and was referred to one of the leading ENT doctors in the city.
“We were so confused. No one could tell me what I had. He asked us to get tests done including an X-Ray, and we got them done,” she recalls.
Saher and her mother went to see the doctor with her reports. The doctor took one look at the X-Ray and walked to his cabin door and told them that he couldn't help them.
“We could not believe it and reasoned with him to help us.”
He looked at Saher and said rather crudely ‘You have cox or TB’ as if it was somehow their fault. “I could not believe that a doctor would behave like that” she says angrily.
The doctor immediately started speaking to Saher and her mother in Hindi, somewhat condescendingly as if they were uneducated and therefore deserving of contempt.
He advised us to leave and go to the government sector, particularly the TB hospital in Mehrauli. It was then that we realised that TB was a disease associated with class. If you got TB, you belong in the TB hospital.
Despite pleading with him, he didn’t help further. At their insistence, he asked his assistant to give them the number of a doctor based in Delhi who could help them.
If You Can’t Trust Your Doctor, Who Do You Go To?
Saher had never felt more helpless.
I am usually the person people turn to in the family but here I was with a disease I didn’t know anything of and with no medical help available. How was I going to get better?
Saher went to the doctor immediately and he asked her to get a sputum test. Additionally, he asked her to repeat all her tests.
It was criminally expensive. I felt like I was being taken for a ride. What happens to those who can’t afford it?
Based on her test results, the doctor put her on treatment for drug-sensitive TB. However, what Saher found frustrating was that the doctor treated her rather poorly.
It’s frustrating when your doctor doesn’t want to listen to you and you feel hopeless.
While her family assured her that everything would be fine, no solace was forthcoming from her doctor.
Saher, with the help of her brother, took to googling and learning about TB.
I know it’s wrong but WebMD for me was more reliable than my doctor. In the end, instead of going to my doctor I would google my symptoms and medicines first and then speak with him.
In desperation, she went to see her paediatrician who had treated her illnesses from childhood.
You need someone you can trust. Doctors don’t realise that patients need that more than medicines. You need a supporter who gives you hope and compassion, not just instructions.
Fighting TB suddenly became easier because Saher trusted her doctor. He was also associated with the DOTS program. “He explained everything about TB to me. I felt more confident of defeating TB,” she recalls.
Being a Woman With TB in the Corporate World
Taking treatment was one thing but as time passed Saher realised TB would also have an impact on her professional life. Working in a job with extensive travel meant she could not talk openly about her disease.
She was also the only female member of a high-powered team where she chose to keep silent about her sickness.
When you are a woman in the corporate world, you can’t afford to show infirmities. You certainly don’t want to be the victim.
There was also the constant fear of infecting others.
My biggest fear was infecting someone in my family. Even though they assured me that it was fine. You feel terrified. I was always worried that my mother would be infected.
One of her friends was immuno-compromised and had spent a lot of time with Saher. Her concern was that she too might be infected.
TB – ‘India’s National Disease
As time passed, she came to know more friends and family who had survived TB.
I realised no one talks about it but so many people I knew had survived TB. This silence feeds the stigma and misinformation. When I told my doctor I had TB, he laughed and said, “You have India’s national disease.” After hearing the stories of so many people, I realised he was right.
After completing the treatment, Saher slowly brought life back to normal. Yet, fears remain of a reinfection.
“I was usually the strong one in the family but TB changed that. Every minor cough is scary,” she says. Saher continues to work as hard as she did before but TB has made her more health conscious.
Until TB, I took life and my health for granted but not any more. I do everything to keep healthy and fight illness. TB has taught me that.
(Chapal Mehra is an independent writer, public health specialist and an advocate on issues of health, development and human rights. He has been working with survivors and experts to provide greater visibility to health issues particularly TB and HIV.)