It was during the summer of June 2015 when I started to get a recurring cough. I felt weak, lost my appetite, and got night sweats. At first I thought it was just a seasonal viral flu. After a month of treatment under a homeopath and a herbalist for bronchitis and asthma, my condition seemed to get only worse. I could not sit or sleep properly; the cough would last about an hour or more, especially before I fell asleep. I became very thin and my skin started to peel off from all over my body. I would sweat heavily, and my hair was falling off. Despite the symptoms, I was very scared of going to the hospital because I kept remembering how my father had died from extensively drug-resistant tuberculosis (XDR TB) in 2013.
Eventually, my mother decided to get me tested. They came to collect my blood and sputum samples, and also to check my blood pressure and sugar. It was when my mother received the report that we came to know that I had Modified CAT IV (multidrug-resistant TB, or MDR TB). I was admitted to Reid Provincial Chest Hospital in Shillong on September 14, 2015. This news took a toll on my family.
During this initial phase, I still remember taking off my clothes and staring at myself in the mirror. I could not recognise the person staring back at me. This woman was just skin and bones, pale from head to toe, with nerves popping from her neck, hands and feet. I was totally broken – mentally, physically and emotionally. I was supposed to be part of a seven-day trial treatment to check the reactions of the injection that I was to be prescribed, but while everyone else who was admitted along with me got to go home on the seventh day (which also happened to be my birthday), I was shifted to an isolation ward as my condition was getting worse. My left lung completely collapsed, and now I have only one functioning lung. My doctor informed my family that I might live only for about two months from the day of admission. However, they kept their belief strong and decided to hide this fact from me until November 2016.
Coping with side-effects
The TB journey for me was very difficult, especially during the first six months of the injections phase. I was taking 14-16 medications in an hour daily. There were these two drugs which I will never forget because their side-effects were so terrible and debilitating. Ethambutol gave the feeling of burning in my mouth and throat while swallowing it, and Rifampicin made me nauseated. Within half an hour I would throw up almost the entirety of the drugs. I used to get worried that despite taking medication on a regular basis I might never get cured. Till this day the thought of those two particular drugs makes me feel nauseous.
For the two years of my treatment, my family had to hire a nurse. Every month for the first six months, my sputum was collected for testing. I was privileged enough to have a brother who worked in the hospital itself, so he would bring home the test tube and deliver it back to the hospital every time. Most of the hospital’s requirements were handled by my brother.
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Some of the side-effects of the medication were hair loss, nausea, headache, shedding of dry scaly skin from my neck down to my feet, jerky movement of the hands, ringing noise in my ears, and numbness in my feet (which I am still facing). Psychologically, the impact of the treatment and the loss of a loved one to this illness continues to haunt me. My mother was my biggest strength. I could not have defeated this horrible disease without her. She strengthened me in so many ways. She inspired me not to give up, to continue fighting. After she passed away in 2018, I was in a very bad space. I used to ask myself what the point of surviving was, when the only person who was the reason for my survival was no longer here to witness this journey.
I had several coping mechanisms, including never letting anyone, except for my care providers and nurses, enter my room. I could not stand the stigma of being a TB patient. I used to hate it when people questioned my family regarding my illness. This coping mechanism of mine helped me. The more I stayed away from people, the more confidence I had about my small improvements. Only I know how far I have come. Otherwise, with the psychological effects of the treatment, even the tiniest negative comments or reaction towards my physical appearance or my behaviour would have had extreme consequences on my mental health, jeopardising my recovery.
During treatment, the guidelines that I had to follow not only had a physical, mental and emotional toll, but also had a significant financial impact. I believe that drugs and treatments should be made free as the disease itself doesn’t only affect the patient but also their entire family. Another issue is misdiagnosis. I was misdiagnosed while I was under treatment with a homeopath, and perhaps if it had been diagnosed correctly, I may have faced fewer side-effects. When we don’t get the correct treatment on time, it leads to many cases of long-term impact and chronic illnesses.
Just like the rest of the survivors, it does affect me when I see my friends completing their postgraduate degree on time. Most already have their dream job, some are married and have kids. Everyone was able to live their life ‘normally’. I, on the other hand, sometimes feel stuck, watching the world move on without me.
It always was, and still is, difficult to express my anger, frustration, sadness in regard to my struggles with TB. Holding on to all of these emotions had a large impact on my mental health. I refrained from expressing my emotions, as it only led to chaos in the home. Communication was impossible, and I believe that this affected my mental health, coming from a dysfunctional family where my home and my environment were filled with toxic energy. Family counselling, and a positive environment can help create a safe space for processing emotions. Most importantly, the caregivers need to be mentally prepared for good days and bad days. On most days, the patient is dealing with anger, frustration and sadness. Throughout this, it is very important to show your love and support during the entire span of the treatment.
To fight against TB, we need to focus more on the patients and on educating the patients and their families about the disease and how it spreads. As a survivor, I do wish with all my heart that one day our country will be TB free.
Rida Shullai is a TB survivor and a Survivors Against TB fellow, a social worker and an entrepreneur.