TB & Me

World TB Day 2015: Stigma!

Written by Zolelwa Sifumba

24 March 2015

World TB Day

Today we think not just about tuberculosis, the mycobacterium that was isolated on a glass slide in a lab many years ago today... We think of those suffering from it and the many lives ended by it... the mothers, brothers, fathers, daughters and grandmothers. Those that beat it and more importantly those who are fighting... and are sadly losing... And the billions at risk of suffering this fate just because they breathe in... and out... and in...

Yes, we are all at risk... something I unfortunately found out the day I was diagnosed with multidrug-resistant TB. Yes, it is curable...the process however can drive one crazy.

So what is this disease first described by Robert Koch in 1882 on this day, what is this disease doing that it is still killing millions every year?

Little did Koch know, he had isolated a very sneaky bug that would mutate to avoid its own demise in order to cause the deaths of many.

So why are people still suffering from such an old disease?

Well there are many answers to that.

A big factor that plays a role is late detection and diagnosis, for many reasons such as denial, fear or just not knowing the symptoms related to TB. On the side of the health system there is misdiagnosis as well as the long periods it takes to get second line results to confirm a resistant form of TB. Another factor is the treatment itself. Over the years resistance has been building and with that comes the need for new drugs. High pill burdens and toxic, sometimes debilitating side effects of drugs cause many to stop treatment. The daily struggles documented by the authors on this blog alone will show you the extent of the problem.

As much as I was studying to rid the world of all illness, I actually had NO IDEA how big and bad the problem is... It was only on the day I was diagnosed and had to take those pills and brave through the daily injections that I started to understand. Now, my goal is to make YOU, the reader, understand...without having to go through all that pain...

YOU are the public that will help in the global fight against this horrible disease...

Why? Because YOU are the doctors who treat disease and must advocate for the development of better medications...

YOU are the people that get the disease...

And YOU are the person that lives with the person that is currently suffering from the disease, sits next to them in the taxi, plane or bus... you dine where they dine, you walk where they walk... and in your lifetime it is possible that you may become them. They are actually us...

Another huge factor that makes this fight against TB even harder is stigma...

What is it that makes a woman, living with her four children, husband and mother in a tiny shack stay silent about something that is eating her up inside. She coughs all day and night, adamant that it's just the flu and that the weight loss and night sweats are just a result of stress. When she cooks no one sees that she never eats and she rapidly begins to fade away. Her and her partner, both HIV positive have disclosed to each other, yet she feels like this is her secret to keep...

What is it that makes a woman in her church going groups of friends hide her pills when they come over for tea terrified that they will find out yet dying inside because she has actually grown tired of being silent about this thing inside her that she doesn't understand. A house wife in Camps Bay, Cape Town married to Dr so and so with the latest this and that. Far from poor, not living with ten others in bad conditions or suffering from malnutrition or in dire need... but how? Surely it's not something well off people get... Longing for help... fearing their rejection.

Why won't he just tell his friends why he is still coughing? Why won't he just tell them that he just came from the clinic and is starting treatment? Why won't he dare being seen in public with a respirator on his face when it clearly serves to protect those around him? Why can't he just tell them?

Well she did and just look at her now, how the people stare and snicker... "Is she HIV positive?"... "she must be"... "probably doesn't take care of herself either"... "hmmmm, what person would be so careless as to get TB, it's her fault... I mean, I have been working in these wards for years and never once did I get TB".

Stigma

As well-known as TB is there are still many misconceptions around it and massive stigma that exists that is a huge barrier to health seeking, early diagnosis, effective treatment and care of those with TB. This also causes an unnecessary increase in the rate of spread within the community.

There's actually also a campaign around it for World TB day. I'm not sure if you have heard about it, it's called Unmask Stigma. We are wearing respirators in solidarity with those who suffer from TB in an attempt to remove the stigma that surrounds TB.

We all need to play our part in tackling this problem.

We all need to stand together and change the culture of silence around TB to one of acceptance, love and understanding.

Let's break the silence. Zero stigma! Zero TB!