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Interview with a Fistula Survivor turned Advocate

April 22, 2015

Betty Awici Betty (far right) leads survivors in a cultural dance to promote fistula awareness and social reintegration.

Ever wonder what it’s like going house-to-house in rural villages, searching for women who need fistula treatment? Betty Awici is a volunteer through WFF’s partner TERREWODE. Betty and her fellow volunteers help to identify those affected with fistula, give them access to quality care, and socially reintegrate them into their communities.

In this interview, Betty shares with us her experience helping women in Uganda

Q: You spend much of your time seeking out women who need fistula treatment. What is that like for you? Were there any surprises?

Betty: I was surprised by how many women with fistula there are in my community and in Uganda. Also, I was touched when I talked to most of the patients I identified and they attributed the condition to witchcraft. They explained that their in-laws were envious of their marriages and therefore they played witchcraft on them.

Q: So awareness of fistula, what it is and what causes it, is something you must work hard to improve in remote communities. How do you go about doing that?

Betty: At TERREWODE, I have received comprehensive information about fistula, which I had no idea about. This has turned me into an advocate for fistula prevention in my community through sensitizing people about the risk factors linked to fistula.

I also regularly visit our health facilities and give fistula talks to women attending antenatal care clinics on issues such as child birth preparedness, risk factors causing fistula and reproductive rights generally. As a group, we also lobby government officials to improve maternal health services at the health facilities in our community and throughout Uganda.

I use music, dance and drama to highlight specific concerns around fistula. I’m proud to be part of an educative radio drama series my group produced with the help of TERREWODE. Our drama series is currently running on a weekly basis in one of the community FM radio stations in Teso.

Q: Once you’ve convinced a woman to get treatment, is your work done?

Betty: No, I also ensure that I visit the women during hospitalization and interact with them. I monitor the return of the women with help from TERREWODE staff or their families, so as to follow up on their level of recovery and initiate them towards social reintegration. I usually reconnect the women first with members of their immediate families, especially the husbands and children.

Q: What is your favorite part of your volunteer work? Do you have a least favorite part?

Betty: My favorite part of my work is patient identification. I love fishing out women affected by fistula, because when I refer them for treatment through TERREWODE, they are attended to promptly and are successful repaired. I also love it when I see my students at the Reintegration Center graduate and pursue tailoring as an income-generating activity to transform their livelihoods.

My least favorite is dealing with husbands who force their recovering wives into sexual relationships prematurely, against adherence to medical advice given to affected fistula patients. I have seen many survivors who have suffered domestic violence because they refused to heed their husband’s demands.

Q: You do so much – where does your amazing dedication come from? Are you a fistula survivor yourself?

Betty: Yes. Since TERREWODE helped me access fistula treatment voluntarily and free, I feel I am indebted to them. I want to help the organization reach out to more women affected by fistula who might still be unaware of availability of free treatment.

Q: What happened when your own fistula occurred?

Betty: I was 30 years old. I was a housewife with six children. I labored for three days and finally delivered normally in the hospital, although there were some complications. A week later, I started experiencing the symptoms of fistula. With no idea that this could be out of childbirth, and scared to reveal it to my husband, I spent a lot of money in various clinics and herbal medicine in vain. I also denied my husband conjugal rights, as a measure to cover up my problem, a decision which saw my husband get another wife.

From the time I got this problem, I withdrew from most of the community activities, including church services and parties (I was a leader of the church choir and participated in composing various songs as well as drama.)

Q: How long were you living with fistula before your surgery?

Betty: Four months.

Q: How did you finally get access to treatment?

Betty: I heard about TERREWODE from the health facility where I delivered. I went directly to the fistula ward at Soroti hospital, where I met TERREWODE staff counseling other fistula patients.

I received access to free fistula treatment services, including care during hospitalization. I also received financial and material support, and social support in the form of counseling on a daily basis during hospitalization.

I gained skills in basic counseling; beading and weaving; music, dance and drama; bakery and cookery; and tailoring. I was also trained in basic literacy and health education, including entrepreneurship. I concentrated in tailoring as my major income-generating activity, which has improved the standard of living for my family and me. I was also linked to a women’s fistula solidarity group in my community, where I’m also an active member of the group’s Savings & Credit community for economic empowerment.

Q: How has TERREWODE helped you?

Betty: It has enabled me to regain my dignity as a woman. My husband is back in my bed, my children and the rest of the family and neighbors respect me and are in close contact with me. I’m very much accepted in society. My ideas are valued and accepted by a wider section of community members.

TERREWODE also provided me with a platform and opportunity to perfect my skills, by allowing me to be a Trainer of Trainers (TOT) in the area of tailoring. Now, I regularly conduct training for new recruits at the reintegration center.

Through TERREWODE, I now know my rights and responsibilities in the women fistula solidarity group that I belong to. I know where to go when my rights are violated.

Q: And now that you have recovered, you’ve chosen to volunteer with TERREWODE.

Betty: Yes. I have been volunteering since 2013 immediately after connecting with TERREWODE...

I will volunteer for as long as I’m alive!

Betty Awici