Individual-level experiences of the disease
Patients described the various ways BUD affected them; their psyche, perception of themselves and performance of their daily activities. The disease took a huge toll on the patients, from weakness, pain, discomfort to loss of limb/body functions.
“I start experiencing this when I saw a small bruise on my body, I thought it was a wound by mistake at first, but until now, it has even gotten worse and I cannot perform activities like normal people do” (53-year old married man – Key Informant)
Participants noted that they experienced difficulties in sitting, lying down, and performing chores.
“ I'd have so much discomfort with this disease, I am unable to lay down and sleep and even to stand I don't sleep must nights. This makes me feel bad” (63-year old married woman – Key Informant)
“Because of this disease I can't do somethings on my own, I would need support from someone to help me walk, as I feel very sick and shaky most times”
(49-year old single man – Key Informant)
“I was beautiful, energetic, younger and light-skinned. Now, I feel so weak and my skin has wrinkles because of this. The wound has given sores and I feel unlike myself” (32-year old widowed man – Focus Group Discussant)
“This is six years since I started suffering from this disease, I noticed that my eye sight is degrading, I can't see properly . Since then, my sight has been bad” (37-year old married woman – Key Informant)
“I thought that I would be fine after going through the first treatment and drugs. But then, I did not see any improvements and so I believed less in the drugs. I feel like no one would accept me. I feel ashamed of my body ” (34-year old married woman – Focus Group Discussant).
"This so unbearable, each time I have to get my treatment, I feel so much pain – both from the injections and from the wound on my body” (39-year old single man – Focus Group Discussant)
“Even when I am able to go back to visit my friends, I feel inferior about myself, I feel like I am no longer a part of them. This disease has made me lose the belief I had in myself” (42-year old single man – Focus Group Discussant).
“I have to admit it that no matter the treatment, I will never be like I was before. I have settled it in my mind. I would live all my life like this. It is nobody’s fault” (40-year old married woman – Key Informant)
“Sometimes, I feel like staying away from people, probably getting rid of my life. I was asked what I did to deserve this wound on my body. In fact, someone suggested that maybe I had offended God and that is why I have this disease” 38-year old married man – Key Informant)
“Although when I hear side comments, I feel bad inside, sometimes I'd think that maybe truly I offended God and that is why I am being punished. But, I am more worried about how my family survives, than what I feel about the disease” (37-year old married woman – Focus Group Discussant)
“I blame myself sometimes and feel like maybe my family offended God, or maybe I did and I'm cursed . I have asked for forgiveness many times” (61-year old separated man – Key Informant)
Interpersonal experiences of patients
BUD as a disease also affected patients interaction with other people, the social groups and organizations they were part of, Some patients described a form of discrimination, reduced communication from members of their various organizations while others received support in various ways. There were cases where marriage partners left their spouses who suffered from BUD.
“I belong to a social club of which I am one of the founders, I'm also one of the executives, but since I started suffering from this disease our members started avoiding me, some feel pity for me. I was asked to step down from my position and go and take care of myself.(34-year old married woman – Focus Group Discussant)
“My close friend did her traditional marriage last year and I was not informed. It was one of my caregivers who came around and told me that I should visit the community square and join my friend to celebrate. When I arrived, I could see that look on most people’s faces as if I was not invited. This has happened many times and on different occasions” (31-year old single lady – Focus Group Discussant)
A participant noted that the community insisted on having a healthcare home built for those with the disease – far away from the community residential settlement just to make sure that every other person in the community is safe.
“One person at a time suggested to my face that we should not live in the community with them. He said we should have our own house built far away from where people lived. I felt very bad about such a statement. But then, what else can I do? They do not understand what we go through in this sickness” (40-year old married man – Key Informant)
“My family has not been very supportive, sincerely. My husband abandoned me and re-married, from his siblings advise just because I had this disease. I felt less of a person and I wished to die. He took our children and left, I have tried to reach them but I have been unsuccessful” (48-year old separated Woman – Focus Group Discussant)
“Two of my kids hate me. They never comes to visit me. They say that I am the cause of their failures and that I'm an occultic man, that I'm reaping what I sowed. I know that God will forgive them because I am not the cause of their failures or my own failures” (60-year old separated man – Key Informant)
“My wife has been very supportive, however, her siblings have always asked her to abandon me and look for who to re-marry. Her siblings said that I will not recover and that I have been disfigured” (58-year old married man – Key Informant)
" I belong to a music crew where we go to different occasions to perform . But since I started experiencing this disease, I couldn't perform with them again". ( 40-years old married man- key informant).
"I used to go to clubs on weekends to chill out with my friends , but since I started suffering from this disease if I go out with them, people do avoid me in the club". (34-years old single man— key informant).
"I love participating in our village festival every year because I enjoy being active in it. But I hardly go out for the festival now because they stopped giving me roles in the festival and some of my colleagues started avoiding me".(47-years old divorced man–key informant).
Organizational level experiences with the disease
At the organizational level BUD decreased the productivity of patients, some patients described how they had to resort to begging and aids from people both family, friends, community and church members in order to make ends meet as some of them were laid off from their places of work.
“I used to be a very vibrant worker, an usher in church . During the first stage of this sickness , I managed to work with it in church, even while I was on treatment. Some of my colleagues avoided me and some members too, I do not blame them though, I was not looking good. I skipped work most times and I was in pain. Finally, I was stopped from working in church” (39-year old married woman – Key Informant)
“When I did not have this sickness I was a farmer, I grew cassava, yams, and cocoyam. Since I had this disease, I cannot work as before and so I depend on donations from people to survive.” (46-year old married man – Key Informant)
“I could easily travel to buy my goods from Aba and Onitsha before now, But I can no longer do that and so I frequently lack money. When I talk to people to support me with money, they consider me a beggar” (57-year old married woman – Focus Group Discussant).
“Sometimes, because I lost my job and have no money, I have to ask for money from my friends, family members, the church, and our age grade in my community. While sometimes I get support, other times, I feel like I am being seen as a beggar” (58-year old married man – Key Informant)
“Some of my friends were the ones who supported me all these while as I could not even provide for myself, let alone my family. It has not been an easy one on me” (42-year old man - FGD)
" I'm a teacher in a big school , I started experiencing this disease 3years ago and since then it has not been easy. I had to quit teaching because students find it irritating to be in my class".( 41-years married woman–key informant)
"My community have been supportive, they provided a healthcare unit for all patient in my community".(60-years old separated man –Focus group discussant)
"I used to take my children to school every morning, but since I started experiencing this disease I can't take my kids to school in peace as people give me looks and my children are being given that name when trying to describe them".(45-years old married woman –key informant)
"I was a staff in an organization where I was a lead member, I was stopped being paid because I missed coming to work sometime when the condition worsened. Some of my colleagues do talk about me at my back". (38-years old single lady– key informant)
Community level experiences of BUD
At the community level there were various degrees of experiences ranging from support from individuals to outright disdain and contempt. Some patients indicated that some of these reactions were as a result of the way they behaved towards these individuals.
“I was attended to by this nurse who was so nice to me. She encouraged me that I would heal soonest and also promised me that the hospital is prepared to ensure that I recover quickly and get back to my activities” (49-year old married woman – Key Informant)
“After a long time of feeling sorry for myself and about my condition my neighbor advised me to visit a hospital, I arrived at the hospital and the nurses were kind to me. They assured me that I would receive all necessary care and that I will be going home much better” (35-year old married man – Key Informant)
“The community built a centre for us outside the community to keep the villagers safe from being contaminated "(49-year old married man – Key Informant)
“One of the days, I was not happy and I spoke harshly to the lady dressing my wound. She told me that the way I spoke to her was the reason why people always reject me in the community. After she left me, I cried in my mind, and I still trust God that I will be healed completely” (57-year old married man – Focus Group Discussant)
"I used to visit the recreational center in my area during my leisure time to cool off. But since I started suffering from this disease I hardly visit there as I could not longer carry myself, sometimes if I receive support and get there, people avoid coming close to me"( 30-years old single man–key informant)
"I have this friend who saw how my condition was and she was really concerned, she took a recording of me and took it to her social media and people donated money and stuffs for me" (47-years married woman –key informant)
"Sometimes if I go to market to get stuffs for myself, some market women do give out things to me in pity. While others don't even want to sell for me" (58-years old widow –key informant)
"Though the community people isolated us, the chief donates food and clothing once in 3months" (60-years old divorced man–key informant)
"The community health center provided for us in the same place they kept leprosy patients, I'm scared because the same mosquito that bite them will also bite me and with time I may suffer leprosy" (32-years old married woman –key informant)
"We have age grade association in my village, I'm an active member of my age grade and I pay all dues. But since I started suffering from this disease my age grade members no longer involve me in all we do"(63-years old married woman –key informant)