“I’m dying Ma, the doctor confirmed that treatment is just not working for me and I’m getting sicker.”
The mother called her other daughters. This was not the first time they’d heard the treatment wasn’t working, but each time the doctors adjusted the medication and the family hoped she would get better.
It had been two and a half years of ups and downs. Death crept into their thoughts the minute doctors started responding to them with averted eyes. Doctors said the only reason she had lasted this long was that her disease was not complicated by HIV/Aids.
The Killer: Tuberculosis. Extensively Drug Resistant Tuberculosis (XDR TB). Extremely difficult to treat as it is resistant to the normal regimen used to treat TB, but it can be cured. “It can be cured” is the hope by which this family has lived and prayed, even as the odds stacked up. How does one begin the conversation about the impending death of a loved one?
A person with TB, especially the more drug-resistant types, is required to be isolated from the community while their medication reduces the number of TB germs in their system. Drug-resistant TB sufferers can spend as much as two years in hospital while undergoing treatment. They can no longer work. Their lives change dramatically.
I visited a friend at a TB hospital that has a special wing for XDR patients. What struck me to the core was seeing a body being removed from the ward. My friend saw my horrified expression and said: “That happens almost every other day – people dying and others waiting to die and I’m supposed to find the will to live with all this death around me.”
My friend also said that some of the patients escaped from the hospital as they could not take the isolation, the loneliness and the prospect that their way out would also be on a stretcher covered in a sheet.
A moral dilemma is presented to the families of patients: Do you inform those around this person that they are putting themselves at risk when exposed over time to the person with the disease? On the other hand a great number of people walk around with undiagnosed and untreated TB. That means we all walk around with an unseen risk of TB infection. Anybody is at risk of being infected but not everybody will necessarily be infected. The criteria for possible infection is simply breathing!
There is a campaign to de-stigmatise the wearing of the mask by TB sufferers. It is called Zero stigma/Unmask stigma. The slogan this year was “Behind the mask we are all the same”.
The campaign encourages the community to also wear the masks to normalise this practice so people with TB are not discriminated against.
Tuberculosis (TB) is a treatable infectious disease caused by a bacterium that spreads through the air we breathe. Every year 9 million people fall ill with TB. Three million of them don’t get the care they need and 1,3 million lose their lives. Stigma is a major contributing factor. Unseen, unfair and unforgiving” (unmaskstigma.org).
The challenge with the mask is that it attracts stigmatisation. Everybody will know that the person is possibly infected. One family I spoke to said they could not bring themselves to wear the masks around their loved one – it felt like they would reject, stigmatise and relegate them to feeling “unwanted”. They were well aware of the risk involved, but the emotional connection would not allow common sense to prevail.
TB is one of South Africa’s high stats contributors. As you count yourself lucky not to be a statistic, take a moment to think of the multiple sufferers, families and communities that live with this disease. Get educated about TB and support de-stigmatisation. Be the reassurance that a mask means protection.
The more you learn about TB, the less likely you are to discriminate. Infection could very well be in your next breath . . .