Skip to main content
Submitted by PatientsEngage on 23 March 2019

Renee, 28 (name changed on request), who was diagnosed with Multi-drug resistant Pulmonary Tuberculosis talks of the challenges of getting the right diagnosis, the stigma surrounding TB and how it affected her relationships and her work prospects. 

I was first diagnosed with MDR-TB (multi-drug resistant tuberculosis) in 2011. The second time around, I was diagnosed with Pre-XDR (Pre-extensively drug resistant) in 2016.

Initial TB Diagnosis

After my graduation in 2011, my mother got transferred to Trivandrum, Kerala so we all moved there. I started getting a dry cough which everyone thought was due to allergies from change in residence. I went to a local GP who gave me some cough relief medicines. Over the next 8 months, the cough continued in spite of visiting several GPs and trying different medications, including ayurvedic and homeopathic treatment. I even asked one of the GPs about the possibility of TB or any infection but he dismissed it saying that this was just dry cough. The cough soon progressed and my weight had also started to decline (I had dropped to 39 kilos) as I could not eat like I used to. But I was never referred to any Lung Specialist and I unfortunately continued to trust them. Eventually, my throat became crabby and my voice had but all together disappeared. Finally in November, 2011, I was sent for a Chest X-ray which revealed I had TB. 

I was started on TB meds, but after 3-4 weeks of no relief, I was referred to a TB Treatment Center which required a hospital stay. I was admitted for a month and was the first patient they had with MDR. I was put on 2nd line of treatment that was to be taken for 2 years. After a month of stay, I was sent home with a prescription. At the time, I was not informed that I had MDR, I thought it was regular TB. I found out a few years later about my MDR status.

In 2014, the course came to an end. I was feeling healthy, had put on weight and was ready to start my work internship. The next two years went by seamlessly. I got engaged to my childhood friend, moved to Panvel and life was getting back on track.

Relapse of TB

In 2016, again I noticed a cough and slight drop in weight. So I immediately took myself to a local Govt hospital for an X-ray. The doctor there saw the abnormal X-ray and said it just showed old scars. For the next 6 months, the cough did not subside and sputum had also developed. I didn’t inform my mother at this time, because I didn’t want her to worry. So I looked online for the top Pulmonologists in Mumbai and went to see one of them. 

I still remember that appointment when he held my X-ray up and told me the TB has returned. Tears ran down my cheeks, I couldn’t believe it!  Worst yet, it was now Pre-XDR which meant, it would be even more difficult to treat. The HRCT Chest Scan showed huge cavities in my lungs, one as large as 3.1 X 2.5 cms. My Pulmonologist was very supportive and started me on treatment. 

Luckily, I had resigned right before my diagnosis as I wanted to look for a new job!  But then I remembered that I had been visiting family in Kerala where I played with a few kids from the family. I was horrified at the thought that I may have unknowingly passed it on to them. My fiancé was equally worried because he had hid my last diagnosis from his parents and they were keen on setting a date for the wedding.

The Stigma of TB

The second time around, the relapse was a big blow. If we disclosed it to his folks, it would spread like wild fire through our entire community and the marriage would be off. We decided to keep it under wraps and stall the wedding plans. His parents, relatives and people would keep asking why the delay in the wedding and we would keep making up excuses. I was soon getting tired of making up all the lies. I was so ashamed! My mother had to change her train timings so she wouldn’t run into her usual crowd in the train. People can get so inquisitive; they don’t truly care about what is happening to you but just want info for gossip. The stigma related to TB is so strong, that only a few friends and immediate family knew about it.

As expected, I was overcome by low moods. I would spend all day crying or being angry. It was such a mental struggle!  I was worried about everyone’s safety around me, so I locked myself up. I didn’t want to talk or see anyone. I started wishing for a different disease or death, because at least I wouldn’t be so ostracized then. I spend all day watching movies and TV shows and that helped passed the time. My Pulmonologist suggested I see a Psychiatrist but I was keen on speaking to only  patients who had been through it. So he gave me Nandita’s number, who is a TB survivor and counselor. She too was young, understood my social and economic background and could empathize with me. Talking to her was very beneficial. I did visit a Psychiatrist after that, and tried anti-depressants for 10 days. It reversed my mood completely and I felt much better. 

My Pulmonologist wanted to put me on Bedaquiline or BDQ, which is a new drug with promising results for drug-resistant TB. It does have one scary side-effect: it can interfere with the heart’s electrical activity. When they did my ECG and ECHO, it showed I had palpitations so I was not approved for BDQ. My doctor assured me that since I as responding to other drugs, my chances of recovering were good. My last CT showed some remnant TB, so there is always a chance of relapse. I am to repeat my CT every 6 months to monitor it.  I will be finishing my current treatment by end of March 2019.

Side-effects of TB medicines

There have been many including:

  • Nausea & vomiting would occur after taking the pills. For the first year and a half, I would throw up after every dose. 
  • Visual and auditory hallucinations lasted for a few weeks and subsided on their own. I felt like a drug addict at the time!
  • Insomnia because I would take all the pills together at night time, and then I just would not be able to sleep. Since I had to visit the Free Regime Clinic at the Sewri hospital daily, I decided to take the pills when at home at night. I would get just about 2-3 hours of sleep per day.  It made me very dysfunctional, confused and irritated.
  • Tiredness
  • Sensitivity to light.
  • Joint pains, where I had difficulty even tying my hair.
  • Depression mostly due to Cycloserine
  • Greying and loss of hair
  • Flaking of skin like dandruff due to dryness.
  • Acidity and burning.
  • Change in skin complexion to a darker shade.
  • Fading memory is recent, where I forget conversations I have had even by the end of the same day. 

What I learnt in managing my condition  

The second time around, I was prepared since I had read up and gathered more information. For instance, I realized that taking the pills with water was causing too much acidity, so I would take it with milk or juice. I also forced myself to eat well, especially foods like milk, eggs, and sprouts. I found that paya soup (made of goat meat) did wonders for my joint pain.  Nutrition is as important as medication for TB!

Your biggest support/companion 

My father passed away when I was 10, so my mother and sister have been my biggest support especially because they have been so tolerant of me all through it.  My sister teases me that she will get back to me for all my mood swings once I get better.

What keeps me awake at night

I do worry about the future!  I worry about a relapse! I worry about my career! 

I want to start looking for work, since I have been unable to work since 2011. I want to be financially independent but don’t know how I will explain the gap years to recruiters. No one wants to hire a person with a history of such an illness.