Story of Divya Sojan who fought TB three times

"Everyone including my family, relatives, and colleagues thought that there was no walking back when Tuberculosis came looking for me the third time with its mysterious smell of death. But, life is not for you to easily kneel to an illness. Persistence to live as much as I long for perhaps made the illness surrender. At the third attack, my body and mind staggered a little bit but many were astonished by how I fought the disease without giving up." The journey was not a very easy one for Divya Sojan the daughter of Sojan Thomas and Bina in the House of Ellukala, Pathanamthitta who vanquished TB three times which appeared in her life as a villain. An intense belief in overcoming gets them back to life each time. They recall their recuperation between life and death.

Beginning with chest pain

"It's Tuberculosis. The light spot(patch) on the lungs looks like the infection. It needs treatment and is recoverable." She did not feel fear or concern when the doctor who examined the X-ray sat in front of her said. She started seeking treatment when the pain kept stabbing in the chest. Ignoring the pain was the method at the beginning but as it became unbearable, she went to a doctor. She was not surprised when the doctor said its tuberculosis. She had acquaintances with many people who had recovered from the disease. She had confidence that she could overcome the disease with the right treatment and medicine. Working in the health sector also gave her strength. The first symptoms of tuberculosis arose in 2011 when she was 23 years old and studying in Mumbai for nursing. After six months of treatment, she took an X-ray again but the patch did not go away, she continued the treatment for three more months. The support of colleagues helped a lot at this stage, as she also looked after work. In 2012, she joined work in Delhi. In between, she also took the training for the MSc nursing entrance exam.

Again in the hold of Tuberculosis

It was 2014 when she joined AIIMS for an MSc Nursing course. But after a few months, she felt the same old tiredness and fatigue. She took an X-ray again and found a larger infection than before. "I was sad and very shaken at the thought that once again the cured disease had followed me again. But my mind told me to hold on as I did the first time. I should complete my course at AIIMS as I wanted to." Divya was sure that she could overcome and succeed this time too. This time there were medicine and injections. Also on alternate days, they would inject fluid from the lungs. "Dr Randeep Guleria, who treated me, rejected the suggestion of other doctors to put a tube on me instead of injecting fluid several times a week. He avoided the tube for me to attend classes. I kept up with my classes, studies, clinical training, and treatment as much as I could. In between the treatment, I got admitted for one month. My body was really tired after a month and a half since the treatment. I was alone during my stay at the hospital. Some colleagues would not enter the room to check the temperature; instead, they would extend the thermometer from outside. The life of a lonely patient affected by tuberculosis living in a hospital room is indescribable. Many would have been introduced to the other side of this loneliness during isolation due to Covid-19. But I was able to experience the love from some people like teachers, nurses, and some strangers. After eight months, tuberculosis was cured and I stopped the treatment."

TB again, treatment at home, depression, loneliness

In 2019, while I was working at AIIMS, my old desire to go abroad increased. Before that, the symptoms were detected again during the medical examination. It was a TB that could resist medicine (multi-drug resistant-MDR). Due to the lack of cough or sputum, it was not possible to perform a sputum examination, so they performed a bronchoscopy. Following this, I took leave and went home. Divya said "My mind and body were tired, I felt like I was gone. A state where life was heavy for my body. My treatment was at Kozhenchery Hospital. Doctors and health workers helped a lot. In the morning I would get an injection from the hospital. I had to take about 22 medicine a day.

"And there are other medicines for vomiting. I was really tired and exhausted to a state of not wanting to eat anything and a state of vomiting if I eat something. I talked to the local health workers in my hometown about how to take medicine and was also able to overcome my bad mood.

"By the onset of treatment, intense coughing came along with it. Following this, none of the neighbours visited my home. Much later I realized that I was suffering from deep depression. The arrival of a memo from AIIMS made me get back to work. But the working environment was different from the past, there too severe discrimination was shown by some of the colleagues. Some of them walked away when they saw me, getting up from where I was eating...and so on. Many of them were not even ready to adjust my night duty so that I could take the medicine without delay. I had to take about 22 pills a day for 5 months while still working, and there was more injection to be taken aside from the pills. But, at that time the support given by people around me was my strength."

TUBERCULOSIS, WOMEN AND 'THE UNION'

" I am one of the survivors of tuberculosis. I know their pain, I am someone who knows about the discrimination they face. The organisation was International Union Against Tuberculosis and Lung Disease." Divya's speech about her survival at the inaugural session of the Union's world conference was remarkable. Divya shared her experience at a virtual conference platform where many spoke including former US President Bill Clinton.

"It was a great privilege to share my experience and life at that forum. Through this, I was able to give hope to many patients. Many people who suffered from tuberculosis, were discriminated against by their families and society and suffered from mental conflicts, were brought back to life. Even I felt a special experience and fortitude. Our society's neglect and discrimination towards patients need to change. It is not compassion or sympathy that they need, it is the support."

I have been a nurse at AIIMS for six years. I am also working with the 'Survivors against TB' an organization based in Delhi-Mumbai which works for the welfare of TB patients. Various activities like health policy, awareness, doubt management, public health, treatment, and psychological support for them are carried out under this umbrella. Mostly women get affected physically and mentally by tuberculosis. Malnutrition, infertility problems, mood swings related to periods, the difficulty of disclosing illness during the marriage...the list goes on. Some women have to pay even the money (500 rupees) earned during the treatment to their children and husband.

"Nobody should go through the sufferings that I went through."

Tuberculosis: Can be your strength by being careful. Here are the ways...

*Acquire the strength of hope and self-confidence yourself.

*The important thing is not to get tired when you are sick.

*Tuberculosis is not an incurable disease. Exact treatment should be taken. Medicines should be taken regularly. Along with it care should be given.

*If we have people who sincerely support us by saying they are with us, we can face any difficulty and situation coolly. Family/relatives/society should try to provide such support.

*Patients affected by tuberculosis should cover their mouths while coughing and sneezing. Also, they should not spit in any yard or public place.

*Free yourself from laziness and try to entertain yourself. Mental health and happiness will give us positive energy.

*Get proper nutrition. It helps to boost your immunity and to maintain your health.

*Make perfect arrangements in matters including treatment. And make sure you get exact medication and treatment.

*Counselling and support should be available from mental health professionals for patients who are under treatment for TB.

* Don't consider talking and texting with your loved ones a waste of time. By that, we will be able to bring someone back. From now on we should also be able to tell that you are not alone, and we are together in this.

*None of us can do supernatural activities. So, sometime we could get tired doing what we do. When we cannot control ourselves or cannot face our problems, do not hesitate to ask for help. You can ask your family or friends or skilled people in this field.

*Let's try to restore the mental health problems around us through a smile. Let's face the person appearing in front of you or the person who is with you with mercy and love. Let this be the attitude we have towards others.

The author is a Senior Sub-editor with Madhyamam Daily