GCTA Community Chitter Chatter on Stigma
Survivor to Survivor
This week we chat with Gulbahor Mirzosharifova, a 28-year-old MDR-TB survivor from Tajikistan. She considers herself fortunate to be one of the beneficiaries of the new, shorter regimen of MDR-TB treatment provided through Challenge TB, the project funded by USAID and implemented by KNCV in Tajikistan. Gulbahor has recently completed treatment in October 2017.
Rhea: When you were diagnosed with TB, what were your biggest challenges?
Gulbahor: My main challenges were going through those nine months of treatment and dealing with the side effects of the medicines.
I didn’t tell people I had TB, except my family and close friends.
In Tajikistan, there’s a lot of stigma, especially for women. Men don’t want to marry women with TB. Even in my own neighbourhood, one man divorced his wife because she had TB. However in my case, my family was always supportive and I didn’t face much stigma – rather I overcame it.
My brother too had TB and because of his experience, I understood the disease well. From his example, I saw that by sticking to treatment and not giving up, you can get cured. This gave me the strength and courage to continue treatment.
Rhea: As per your experience, how much of this stigma was self-stigma?
Gulbahor: I personally didn’t care much, but my mother and father insisted I hide the fact that I had TB. I just told people I have a problem, I didn’t say it was TB. I didn’t have any self stigma.
Rhea:Are there particular instances where you felt stigma was more prevalent?
Gulbahor: The only instance where I think people will have self stigma is when people don’t think it’s curable. I saw my brother was cured so I didn’t think that way.
My only real fear was that I may stop taking treatment because of the side effects of the medicines.
There are some factors that contribute to an increase in social stigma, particularly when people are misinformed and misled about TB. People think that TB is a family disease and believe it is not curable.
Many people go to traditional healers instead of taking proper treatment. They are prescribed roots, dog meat, bear or hedgehog fat and other such strange things to cure TB.
Rhea: Could you please elaborate on one action that will help end self-stigma and one action that will help end social stigma.
Gulbahor: The only way to address self stigma is to raise awareness and give the correct information – we must particularly focus on the fact that it is curable and it is not a family disease because many people think that if you have TB your whole family must have it.
To end social stigma, we should encourage TB survivors to speak up about their experience with the disease and stress on the fact that this disease is curable.
Rhea: What made you open up and start talking about TB and your experience with the disease?
Gulbahor: : As someone who has the experience of going through TB treatment, I know that people who are affected by TB need social, psychological and moral support. By telling people who are suffering from the disease that I too have had TB, they are encouraged to complete treatment.
Once I got connected to Stop TB Partnership Tajikistan’s Patient Support Group, I realised that I’m not the only one who was suffering and who is trying to find ways to help others.
I’m currently a volunteer there and I want to continue working with this strong group of people.