You know how even back home, people are still reluctant to let it become known that they need psychological help? It still seems to be seen as a weakness to have feelings and moods and tension, and to go to a professional for help in working through them. I mean, I get it. It’s in our culture to be valued for being strong and not needing any help, and we all fear appearing to be weak. Yet talk to anyone who has seen a good psychotherapist or mental health counselor and they will all say how they wish everyone could have that experience. Slowly the attitudes are changing, back home.
Imagine how much longer it is taking, then, in countries – like here in Tajikistan – where there is no word for ‘counselor’, let alone something like ‘psychosocial support’. There are few mental health services here and suggesting someone could use them often causes dismay, or even shame. And we haven’t even started to talk about TB yet and how that is a subject for mental health. Changing attitudes is a long way off, I’m afraid, yet in my humble opinion after just one month, is the main thing we need to help out with!
Okay, of course, you have to start by treating the disease. I needed a crash course on TB when I signed on for this project. Are you like me, and thought TB was mostly eradicated? In large parts of the world it most definitely is not. Central Asia is badly hit, and because of lack of knowledge, information, support, resources, etc, it’s getting worse. Here’s what I’ve learned in a nutshell: TB is caused by bacteria and is treated by antibiotics. If you don’t take them properly, the bacteria become resistant to one or more of the antibiotics and mutate into new forms. This is called drug-resistant (DR) or multidrug-resistant (MDR) TB. More drugs are added to the regime to fight this new form, but there are several of them and they have to be taken for a longer time. There are many unpleasant side effects. If you don’t follow the drug regime properly, these bacteria also become resistant and then we speak of extremely drug-resistant (XDR) TB. There are few effective drugs available for XDR-TB.
The horrible thing is, the drug-resistant TB bacteria can then be directly transmitted; you don’t have to develop it by not finishing the medication course. So even young children can present with MDR-TB. However, not all the members of the medical profession in this part of the world are aware of this, and the children aren’t receiving the right treatment.
Hence this MSF project to help treat pediatric TB. It’s only been a year, but the team has done amazing work: up and running in a multi-disciplinary and multi-national team. Here’s an example of a team on an outreach visit: our MD, the local MD, our translator and our psychosocial counselor. Missing (but only from the picture) are the nurse, and the family.
So how is TB a subject for mental health, you ask? Because by the time families get their children referred to us, often people in the family have already died from TB. The child is usually already very ill and sometimes the parents or other family members are symptomatic. They have often been on medication regimes before, poorly supervised and so improperly ended, leading to resistance to the drugs. Their trust in their own doctors is often gone. If they decide to start with us, they have to commit to a medication regime for their child which can last up to 18 months.
So what have we got? Before we’ve even met them, they’re dealing with issues around loss and grieving, they’re feeling anxious and desperate about their child, and their trust in the medical profession is down to zero. And then we have to tell them their child will be getting a whole mess of powders, pills and injections, for a long time, which will probably cause painful and nasty side effects. Who could watch their child go through that and stay sane?
I watched a young girl this week, as she sat staring at eight pills and three bowls, the syringe waiting on the cushion next to her. She started with the biggest first, because she has trouble swallowing them, and she ended with the yummy juice. So smart. So brave.
There are a lot of feelings, moods and tensions in these families! There’s plenty of mental healthcare – or as we prefer to call it – psychosocial support – to be done here. But … as I said, the concept is still pretty alien.
So we start at the beginning: talking, listening, supporting, doing whatever it takes to help them stay on the program. But privately, because no one must know. Psychosocial help signals weakness, but in this culture so does having TB. Which brings me to the stigma … families here are being shunned and devalued by those around them just for having TB. Misconceptions and misguided beliefs about the disease are the main reason.
More about these lovely Tajik children and their struggles – and our struggles to help them – in the next blog.