“TB is nothing to be afraid of…”

“I was a smoker at the time I was diagnosed with TB two years ago. The doctor told me I was even more at risk due to my habit of smoking. I was miserable because I couldn’t even hug or kiss my children when I wanted to.

I wanted to be healthy. In fact, even before I got TB, I was scared of going near my children because I used to smell of cigarettes all the time and it wasn’t healthy for my children. So, after starting treatment I quit smoking.

“He died at 25 of TB, leaving me alone to face the world..”

“My husband was a drug addict and an alcoholic. When he got TB, Suganya from REACH contacted me for getting tested. My children and I were taken for a screening test and X-ray and my younger child was diagnosed with Tuberculosis. Had Suganya not intervened, I wouldn’t have taken the issue seriously as I did not know that TB could have infected my family. My younger child has completed treatment but my older one was diagnosed recently and is on treatment.

My husband had all the bad habits, which made him prone to diseases like TB. When he couldn’t walk due to TB, I used to go to the center to fetch medicines but he would refuse to take them. It has been six months since my husband died.

SHE BRINGS ME FLOWERS… A TOKEN OF LOVE

“Flowers always make people better, happier, and more helpful; they are sunshine, food and medicine for the soul.”  –  Luther Burbank

She brings me flowers whenever she meets me. It is all flowers blossomed from her own garden, different varieties and in different colours.

Chandra* was introduced to me as a symptomatic patient and diagnosed with TB. She has undergone lots of psychological and emotional stress when she was affected with TB. She faced struggle at home managing with the teenage children and inattentive husband. Above all, burden of TB fuelled her struggle into massive psychological catastrophe. She looked very unmanageable whenever she came to take DOTS.

During my home visit to Chandra’s home, I found a little space around her home. I suggested her to plan for gardening as a way to drain the stress. I told her to take some time to water the plants in the morning and evening; observe at the plants, flowers and the way it grows. I just wanted herself to feel refreshed free of her stress so suggested the way.  It worked out for the purpose it was suggested.

How her struggle with the family and the disease put under control was another tale…! But the life flowing, beautiful garden added colours to her life, scaling up her energy to blow up the devastation which she led into.

It is all because of flowers smiling at her colourfully and green plants nodding at her energetically, taught her handling the problems, balancing her emotions and of course yes, managing the disease pathway towards Cure.

She brings flowers for me, both, she and a flower smile at me blissfully… So I.

– shared by Ms. Shanthi, PPM Initiative, REACH.

*Name is changed to protect the identity

 

‘COUGH WITH CARE’… A REAL CARE

A fine morning, my official day started when I am pushing myself into the electric train amidst the horde of office goers. A miracle can happen once in a while, it happened – alas, I got the seat near the window. While train started moving, the fresh breeze blew on my face and my eyes were closed to enjoy the journey towards my Work Place.

Suddenly my ears were bewildered with the strong sound of a cough. As a reflex action to a stimulus of coughing sound, my head turned to a lady sitting near me immediately. She was groomed up well brightly, seemed to be well educated and an office goer. She coughed out continuously, but with no precautionary action of closing her mouth. Nobody showed any concern over it, but I started feeling uncomfortable sitting there. I found no way to tell her how important it is to cover her mouth while coughing. Feeling helpless, I looked around, found the empty seat in the other corner invited me to occupy and I did.

A thought flashed – Few months before I had also been similarly like her. If I am not employed in REACH and not sensitized to cough with care, I also will continue to be the same.

How to annoy an unknown person who cough without care by telling her to take care of others around while coughing, that too, in a public place?!  I got down from the train and walking towards the office, lugging with this question, still searching for an answer!!

— Shared by Sudaroli, REACH

A PHARMACIST TURNED TO BE A CHAMPION OF TB CONTROL

“You look out there and there’s people that, their day is changed because of your contribution to it.”      – Brad Praisely

These words are remembered with the role of the pharmacist in augmenting our efforts in TB Control as follows:

I am Thirulogachandar, a pharmacist running AVI Medicals in Kolathur, Chennai. It has been 20 years since I am in the pharmacy field. One fine day, just 4 years back, I got introduced to REACH and their initiative of engaging pharmacies in TB Control. Being motivated by the objective of the organization, I decided to work towards the Noble Cause – Ending TB.

I usually do not get as many customers who come with the symptoms of TB as I am dealing more with the psychiatric medicines. How can I contribute towards TB Control?

I joined with the Pharmacy Initiative Team of REACH.  Being a Treasurer of Chemist & Druggist Association (C&DA), Chennai, I have an easy access to influence the key personnel of different Zonal Druggist Associations. Slowly there started a schedule allotted for REACH in the zonal meetings to talk about the role of pharmacists in TB Control. Gradually the pharmacists started enrolling into TB control – referring the symptomatic patients for TB diagnosis, spreading awareness, issuing IEC materials about TB to the patients, being a DOT Provider etc.,

Now it becomes a regular practice to include the discussion on TB Control in every Annual General Meeting of C& DA. It leaves me with the satisfaction of being a kind of ‘lead’ in reaching more pharmacists to engage themselves in TB Control.

— Shared by Mr. Thirulogachandar, Treasurer, Chemist & Druggist Association (C&DA), Chennai.

IT IS WORTH THE WAIT

‘Waiting’ – the process may not be attractive or pleasant, in fact to anybody at many times.

Clock ticks … It is a busy hour of a Private Medical Practitioner’s Clinic… Myriad of patients, from children to old people, awaiting to get healed….  of course, different people having various illnesses, keeping their work aside to meet the Doctor to cure their illness. Everybody has the purposeful waiting as I do, but for a prescribed stipulated time to get their turn to be attended and move on……

I wait to meet the doctor for engaging him with us in TB Control activities to make India ‘TB Free”. The duration of ‘Waiting’ will fluctuate, but mostly ‘Uncertain’. Many a times the Doctor will peep out and say “Hi” and call me, but the stern attendant will decide to let me wait a bit longer… Okay… so it be. At other times the benevolent attendant will let me in but the patient will fight for his turn as I am looking healthy and happy…. A good old Tamil proverb comes to my mind, “God gives the boon, but the priest will have to permit too…”

But once you get your turn and the doctor patiently listens to me and happy to be a part of the TB control programme with the objective of saving Patient’s life at the centre stage… Alas, all the waiting and anxiety disappear giving way to so much Satisfaction… A day lived well indeed…

— shared by Dr. Radha, Project Director (EQUIP), REACH.

“Being diagnosed with TB: Why Me?”

“When I was diagnosed with pleural TB six months ago, the first thought that popped into my head was, “Why me? I have done nothing wrong, what did I do to deserve this?” I had completed my engineering and was to be married in a few months. Several things worried me – would my fiancé accept that I had TB? It seemed better to just call it off. When the social worker told me that I had TB, I just broke down and cried for several hours, I couldn’t stop myself. I stayed depressed for days and seriously thought of calling off my impending wedding, but my mother helped me through that. And after being counselled by the social worker (Chithra ma`am) and speaking to several other TB patients, I was re-assured and began to take things in my stride – TB was curable, after all.

Today, I am in the sixth month of medication and feeling much better. All this while I have kept my condition a secret from everyone at home, including my husband. But today, I plan on telling him. I’m nervous, but I will tell him.”

–         Srija* (patient’s named changed)

Finding the root of a problem: why everyone counts in TB control

Going to the root of a problem, be it great or small, always pays. I learnt this recently, when I noticed a pattern in the cases referred to the Medavakkam DOTS centre, that I am in charge of – about 4 or 5 patients came from Tambaram, all in small gaps of time between each other. In the course of conversation, I realised that they had all been visiting a local doctor in the area, who had put them through a series of non-TB medication until they were forced to go to a bigger hospital to diagnose their condition.

I decided to pay a visit to the doctor – I found he was a young and friendly man, and explained that Tuberculosis could be diagnosed early and that this could it turn stop the spread of TB within the community. I also told him about the 5 patients who had come to the Medavakkam DOTS centre, after being improperly diagnosed. The doctor seemed to realise that participating in TB control and in the DOTS programme would also help him win the trust of his patients. He even volunteered to become a DOTS provider for one of those 5 patients.

After that, I have gotten several suspected referral cases from him for sputum tests and he has recently identified a sputum positive case. If we can all collectively work towards TB control, Zero TB might not be just a dream.

– Joseph John, Social Worker, REACH

A case of mistaken Identity

Deena and I were sitting at her table completing paper work after the morning rush of patients had left. An attendee from the hospital came into the room to clean it. She suddenly grunted at me in an irritated manner and told me to go sit outside. I was a bit stunned at the tone of her voice but thought nothing of it. Deena continued writing. I got up and stood in a corner of the room, to let her mop in peace. She suddenly looks at me again and says “For god sakes go and lie down on the bench outside”. Now I was totally confused, a little angry and a little nervous of this woman who was glaring at me. I stood there feeling like a 5 year old, who had done something wrong and dint know it. “She’s a staff from the main office” Deena says grinning.

I realised then the lady has mistaken me for a patient. She of course sweetened immediately, apologising and reassuringly asked me many questions of what I had come to do. TB patients are, from what I have seen at the bottom of the ladder. When they come to us they are sick, unable to work and often isolated by their families. They are sad and troubled and always ask “Why me? What did I do to get this disease? So if I was a patient sitting there, I might have not been surprised at all by the woman’s attitude. As someone that works in healthcare I have noticed that the proximity to the ability to heal, leaves most people with a power complex.

It gives doctors, nurses, trained health workers, health researchers, hospital attendees, and security guards – the ability to blame, judge and undermine the patient. It allows us to be critical of institutions, systems and people without being critical of where we fit into the machine, and what we do or do not do to remedy the things we complain of. I have to confess this is not the first time I was mistaken for a patient. The first time I was back at the desk; a patient sat beside me, rolling her eyes and laughed quietly, gesturing at the blister pack on the table thinking it was mine. She seemed to say “you have no idea what you’re getting into do you?” . At that time I remember being thrilled thinking, this was my “breakthrough” ethnographic moment.

Neha Lamech

Our long-time associate – CSI Rainy, Royapuram

Located in Royapuram, CSI Rainy is, as the hospital’s director puts it, “a  private institution where people are sure they can receive individualised attention and care and avoid the long queues of government hospitals, at rates significantly lower than the norm elsewhere.” The hospital has been one of the earliest institutions to work with REACH and allow us a DOTS centre on their premises.

The DOTS centre is a small, somewhat cramped space, but it serves its purpose well – an area just below a staircase with dusty, metal checkered grills, fitted in with a cupboard, and a utilitarian table and chair for our social worker, Mrs Dheena. A standing rotatable fan stands right next to her. She tells me a little about her work hours, and is matter-of-fact about her daily routine as a counsellor and DOTS provider. Then, she starts sifting through a sheaf of charts to find the one she’s looking for – a story that will leave her teary as she recounts it.

Mrs Dheena, Social Worker, REACH

 She points to a passport-sized photo of a keen-eyed man on the sheet, and the irredeemable ‘Deceased’ marking on it. “He died a few months ago. He was regular on treatment, but he was also HIV positive, and that claimed his life. His wife has also tested positive for HIV, but refuses to test their two girl children for HIV. I’ve been trying to convince her to do that and put them on some therapy, but I’m still trying,” she says, obviously trying to keep her emotions in check, “If the children test positive and can be put on treatment, it may add a decade or more to their lives – but their mother refuses to see this. She says that HIV took her husband away from her and she would rather not know.”

She abruptly puts the sheet aside, and moves on to show me documents of more of her current patients – some of them as young as 4 and 6. Her manner is matter-of-fact again, as she gets up to speak to an elderly couple, who have come with an X-ray result in hand. They look educated, well-dressed and ask her many questions – all of which she answers patiently. When they leave a few minutes later, Mrs Dheena talks again of how a lot of people are more comfortable coming to a private hospital like CSI Rainy, for their DOTS treatment, rather than a government institution – many a times, the patient isn’t treated with much empathy. Sadly, there aren’t too many who have allotted that space, as small as it may be, in this city.