“All my problems started with tuberculosis. I can say that tuberculosis destroyed my family since my father became ill… He was sick in the hospital a lot, my mom was by herself with no money… My family struggled, got in a lot of debt, which in a few years led to their not having a home… They were left on the street because of tuberculosis.”  Mariana, Bucharest, Romania

This post is brought to you by Jonathan Stillo, an anthropologist who has been researching TB in Romania since 2006. He has interviewed over 100 patients as well as dozens of doctors and NGO representatives, visited numerous hospitals and sanatoria and even lived at one large sanatorium for several months. Jonathan tells the following stories of two young Romanian women and their experiences with TB.

Women in Romania face special challenges when they or a loved one becomes infected with tuberculosis (TB). When women contract TB, they are often forced to choose between the welfare of their families and their own health.  Frequently, it is the work of caring for a sick relative, such as a father or husband, which first exposes Romanian women to TB.  Once infected, it becomes much more difficult to keep up with the traditional responsibilities of maintaining the household, caring for children and working outside the home. These responsibilities place women both at risk for infection and for treatment failure, which can lead to infecting their loved ones.

Alina and Mariana are two women in their mid-20s being treated in Bucharest for multidrug resistant TB (MDR-TB). Alina told me she had no idea how she contracted MDR-TB. She had never met anyone with the disease and when her doctor told her she had it, she had to research it on the internet:

“I was in my home, I had no symptoms except one, the most important: I spat blood. It wasn’t much, but I was so scared that I thought I was going to die. I was with my future husband, and I was very, very scared. The next day they took some tests. They said that I probably had TB, but I thought about the worst: cancer.”

It may seem hard to believe, but Alina is lucky. She comes from a wealthy family who rented an apartment in Bucharest while she completed her treatment. They brought her food every day and kept her spirits high. Alina did not experience the worst of the medications’ side effects and her prognosis was good. Nothing in Alina’s or her family’s life was destroyed or lost, only temporarily delayed. She will return to her job at a multi-national corporation, and although she had to postpone her wedding, her loving fiancé waits. Alina’s experience demonstrates the importance of having financial resources and support from family and friends. Her family had the means to support her throughout her treatment, and her fiancé knew enough about the disease not to be afraid and shun her. She received all the love and support she needed to be cured.

Mariana’s story is very much different and, sadly, more typical than Alina’s. When I first met Mariana, she looked like a skeleton floating in a fluffy pink bathrobe. She weighed barely 38 kilo, her jawbone jutting through her thin, pale skin. Mariana contracted MDR-TB directly from her father when she was 25 years old. She cared for him when her other siblings did not and stayed by his bedside until he died. Her two siblings are now healthy, but Mariana is seriously ill.

I have known Mariana for about two years and every time I’ve seen her, I believed it would be the last. I have watched dozens of patients worsen and die but Mariana keeps fighting because she has a little boy who she desperately wants to see again. Because Mariana’s TB is drug resistant, she requires two years of uninterrupted treatment. Mariana was unable to stay in the hospital for the recommended time because of problems at home:

“I was sick, but I was supposed to help everyone else. I was the one who had to help my husband get over his depression. He was saying that he felt all alone, that he would come home from work and he wouldn’t find me there, that the child was asleep and he had no one to talk to… during this time he was violent, he would break things around the house… he wouldn’t beat me, but he was verbally abusive… but for my boy I kept quiet, I didn’t have any other place to go to. I was sick and… I was broke. [crying]”

Mariana returned home against her doctor’s recommendation. Her family needed her, especially her little boy who was only five at the time. In the beginning everything was fine:

“For a few months I would go to the medical unit to take my medication. I would ask a neighbor to come babysit. I would ask my mother in law to come home early so that I could go take my treatment… [then] we needed some money in the house, because my husband had run out of work… All of a sudden, the financial crisis happened and he lost his job.”

Mariana found a job at a nearby factory working an overnight shift becoming the only provider for her family. She took care of her son, cooked and kept a good house, all the while taking her TB treatment. The hardest part of caring for her family was cooking because the heat and steam made it hard to breathe.

Mariana’s health rapidly worsened; she became much sicker until she could barely get out of bed. She had trouble sleeping and eventually began coughing up large amounts of blood. For Mariana, the saddest realization was that she would have to leave her family, perhaps permanently. She knew that every time she went home she placed her little boy at risk for catching TB. It tore her apart.

“I told my husband that he shouldn’t expect me to come home any time soon, to plan and put his life together without me… I don’t have plans anymore, maybe just to get better if it’s meant for me to get better, if not that’s fine. The only thing that hurts is the thought that someone might be asking my boy if he has a mom or if she died.”

Mariana’s case is worse than average, but the problems she faces are common. Her family is working class, her father was a security guard and her husband is a furniture salesman, but TB drove them to poverty and even temporary homelessness. Mariana did not live a “negligent” or “unbalanced” life. She is an intelligent, young woman who fell in love, had a child and tried to have a normal life. Mariana’s story reveals how TB can impoverish families and the particular difficulties the disease poses for women. This year I watched a 31 year old woman die, her children are now orphans. These are avoidable deaths from a curable disease.

As Jonathan’s story demonstrates, TB can have devastating consequences for women. Socially, the stigma of TB often falls more heavily on women than on men. TB also has a profound effect on women and their families. Women suffering from TB are often unable to care for their children and have trouble performing household chores. In addition, many women have jobs outside of the home to provide additional household income. Contracting TB leads to a loss of work and a loss of wages. It is crucial that we act now to save the lives of hundreds of thousands of women and reduce the burden the disease has on their families.

Jonathan Stillo can be contacted at jstillo@gmail.com