“Regardless of the form of tuberculosis, the diagnostic is always a shock”

Tuberculosis is no longer a disease of poverty but many Romanians are not yet aware of this and do not expect to become ill. The diagnostic is hard to accept for a bank manager, for example, or for a lawyer. Cătălina Constantin, the President of the Association for the Support of Patients with Multidrug-Resistant Tuberculosis, talked to us about the social and psychological problems faced by tuberculosis patients, but also about the importance of the permanent training of the medical staff working with TB patients.

What are the problems, beyond the disease, the problems that are determined by the disease and are complementary to it?

There is a context, before the disease; tuberculosis is no longer a disease of poverty. The main vulnerability is a weak immune system. The general context is that there are many cases of tuberculosis in Romania and low immunity always exposes people to the risk of contracting the disease. Tuberculosis affects people in all the dimensions of their lives: psychological, social and medical.

What happens when someone finds out the diagnostic?

Regardless of the form of tuberculosis, it is always a shock for the person concerned. Most of the times, the diagnostic of multidrug-resistant tuberculosis (MDR TB) is not established from the start, because there are only a few places in the country where we have the appropriate equipment to make this kind of determination rapidly. Things are still like this: you find out that you have tuberculosis and after one or two months of treatment you can find out that you have MDR or extensively drug-resistant tuberculosis (XDR TB). But all patients go through the shock of that moment when they find out the diagnostic, the long duration of the disease, the fact that they have to fully reconsider the following six months or two years of their lives and put everything else on hold and follow the treatment. There are many who are unable to do this, they lose their jobs, lose opportunities, stop going to school or give up going abroad to work, they postpone their wedding or leave their girlfriend or boyfriend. However, the most important thing is losing one’s job because not all patients are employed under an employment agreement or under other legal work contracts and, if they are employed, the contract does not reflect the total amount of money they receive and then one of the major problems is that their income decreases dramatically. On top of this, the needs increase. For example, if the parent who became ill was taking care of the children, he or she can no longer do this, they must hire someone (our note – the hospitalisation period for MDR or XDR TB cases may last between three and ten months or more, until the patient becomes negative, meaning until the patient no longer transmits the disease). Because they take the tuberculosis treatment, there is a high probability to develop adverse reactions to the medication and other amounts of money are needed to take other medicines to reduce the intensity of these adverse reactions. These additional drugs are not free, some are partly compensated by the state, others are not. Some patients experience pain because of the anti-TB treatment, others develop liver conditions which means another treatment, other expenses. The patients need rest and food, and food also costs. Before tuberculosis, they could eat anything, now they need meat every day, rich food, rest and quiet.

Another social problem is that many patients have to change profession or their job. Many times, this is costly or impossible. If they work in constructions and one of their lungs was affected, if they were exposed to environments that lower their immunity or to stressful environments, they must give up that job.

At psychological level, anxiety-related conditions, psychotic manifestations and hallucinations may appear. I remember one patient who said that she was feeling a sharp pain in her head, as if someone had stuck a knife there. Hallucinations are complex and real, in the sense that another patient, when she was taking her treatment, believed that she was a canned paprika and could not understand what she was doing in bed instead of being in a jar.

Are they obsessed by the question “Where did I take the disease from”?

Of course, they are obsessed by the question “Why?” because they are blamed for having contracted the disease. This is what they are told by people who are afraid, from physicians to their own families. “Why me?” they ask themselves. And then come periods of fury, depression and, in the end, acceptance, if they are lucky and receive support. When they accept the situation, they can understand that the treatment is the way to be cured and that it is accompanied by a multitude of unpleasant things.

How important is the communication between the patient and the physician?

In this relationship, both parties are responsible, the patient and the medical practitioner alike, whether the latter is a physician or a nurse. The tuberculosis patients consider that the person taking care of them is very important and then they do not ask only for the diagnostic and the treatment, but also for many other things: acceptance, understanding, empathy, advice in matters that are not related to the specialisation in question. They do not necessarily receive these and this happens for various reasons, because the physician and the practitioner also have their own needs: time, training and support, because many of them are burned out. If we want efficient medical staff we have to make sure that they are provided with regular training sessions, to remind them what it means to maintain communication with the patient, we need motivational intervention but also to teach them to strike the right balance in their work.

How did the association you lead appear?

In 2011, I was working as a volunteer with the Red Cross and I was coordinating a psychotherapy and social support programme for patients with multidrug-resistant tuberculosis during their treatment sessions. But I have been working in the field of tuberculosis for about 20 years. I was a nurse at the “Marius Nasta” Institute, then a psychologist from din 2005, and when I started my volunteer work with the Red Cross I was providing psychological support to the patients in sector 5 in Bucharest. I saw many patients – too few of them were diagnosed with multidrug-resistant tuberculosis at that time – and they had very difficult situations in their lives. The shock was when I had a therapy group of 20 people with multidrug-resistant tuberculosis, a group where they felt secure because they were surrounded by others with the same kind of problems.

I was helping them increase their self-esteem and maintain their motivation to remain adherent to a treatment that was causing them a lot of problems. There was however one dimension that I had no answer to and which pertained to their relationship with their families. When, as part of the therapy, I asked them to draw their families, one patient drew his family but he was not in the drawing. Another one had come with his wife, who also had MDR. He drew himself, his wife, their child and the cat, but they were enclosed within a high fortress wall inside of which no one else had access. They felt humiliated each time they went to the Assessment Committee and I used to prepare an entire intervention to deal with this aspect alone. I would help them vent and project themselves with some sort of power that would make it OK to ignore and think that the others were the problem, not them. These experiences gave me the idea to start the association.