Avoidance, infidelity and abandonment.

Seventeen (63%) articles indicated that having a SNTD was associated with a decline in relationship quality. Men and women in fifteen (56%) studies reported falling victims of abandonment or infidelity, with women being more vulnerable than men. Avoidance, described in thirteen (48%) studies, normally preceded infidelity and abandonment [23,34,41,45,48,57]. The included studies primarily provided accounts of women being avoided by their male partners (mentioned in 12 studies), with six studies describing avoidant behaviour by the female partners. Commonly, women felt that their male partners had grown distant and unsatisfied with the relationship, opting to distance themselves from them and, in some cases, pursue sexual relationships with others [23,45,48,57].

“When I was diagnosed, I felt that my husband’s behaviour had changed, he didn’t share anything with me and he pretended to be busy with work. But actually he was trying to be far away from me” [48]

(Nepali woman with leprosy)

Three papers attributed avoidance to the male partners’ fear of infection [34,48,57]. Across contexts, women also expressed concerns regarding potential disease transmission to partners and close family members [40,48,52,57]. An extreme instance of this is exemplified by a Colombian woman who left her husband without telling him about her leprosy due to her perceived need to self-isolate to protect loved ones [57].

Fear of disease transmission was also reported to negatively impact intra-marital sexual relationships [23,34,41,45,57]. Several women reportedly abstained from sex entirely since their diagnosis [23,45,48], and 47% Ethiopian women with podoconiosis reported that their husbands avoided sexual intercourse with them and instead sought sexual contact elsewhere [23]. Disease transmission misunderstandings often affected marital sexual relationships:

“My husband is afraid that it transmits through respiration, so he doesn’t want to tongue kiss for seven months” [48]

(Nepali woman with leprosy)

Two Nigerian males with LF also reported no longer sexually engaging with their wives due to shame and general SNTD-related relationship decline [45]. In turn, Varkevisser et al. [58] highlighted that whilst Nigerian and Indonesian men often discontinued sexual intercourse with their sick partners for the first few months after diagnosis until leprosy symptoms started to subside, women enjoyed less freedom to do so.

Avoidance and infidelity commonly preceded outright rejection and abandonment [23,36,37]. A study assessing the impact of leprosy, podoconiosis and LF on family quality of life in Ethiopia found that 20% participants of both genders divorced due to the SNTD or were continuously asked for divorce by their partner [49]. In turn, Varkevisser et al. [58] calculated that about 25% of the married women with leprosy in Indonesia and Nigeria reported abandonment or divorce compared with 10% of men. Commonly cited reasons for abandonment and divorce included pressure from a partner’s family [34,40], the affected individual’s inability to fulfil their designated role [23,36,45], and the husband’s desire to marry a “healthier woman” [23, 57]. In turn, the implications of abandonment and infidelity for women were wide-ranging, from emotional distress to financial hardship, indebtment, and a risk of exposure to sexually transmitted infections [23,36,49,57].

Intimate partner violence and abuse.

None of the male participants in the reported studies experienced violent or abusive behaviour at the hands of their female partners, but IPV and abuse was reported by female participants in four (15%) studies [23,36,48,56]. Abuse took various forms, ranging from insults and controlling behaviour to physical and sexual violence, including restricting access to financial resources, social networks, employment, and healthcare. In northern Ethiopia, women with podoconiosis commonly reported being pressured into sexual acts, with threats of abandonment, violence and cessation of support if they failed to comply [23]. Similar abuses were also reported by women living in Nepal:

“When I don’t want to have sexual intercourse, my husband forces me. He scolds me ‘I earn money, bring food for you all but you don’t want [to have sex], then get out of the house!’ Sometimes he raised a hand on me…so I have to be near and close and have sex with him” [48]

(Nepali woman with leprosy)

A study exploring IPV against women with podoconiosis in northern Ethiopia found that IPV predated the onset of podoconiosis in 87% of cases [23]. Although not the primary determinant of abuse, podoconiosis was associated with an increase in the frequency and severity of IPV:

“His violence increased as the disease aggravated. The problem is the disease because it hinders my ability to work hard” [23]

(Ethiopian woman with podoconiosis)

This study concluded that the increased violence arose due to men’s frustration and dissatisfaction with being married to “unhealthy” women who failed to fulfil their expected roles, which was confirmed by an informant who stated:

“… arriving home he says ‘while I am working hard, you only sit at home, and I shouldn’t feed such a weak woman’. He used to attack me with whatever he found around him just like a knife or even an axe. If he got drunk, he would use anything” [23]

(Ethiopian woman with podoconiosis)

Across contexts and SNTDs, most of the women who had experienced domestic violence had not received formal schooling and were unemployed and financially dependent on their husbands [47,56]. This dependence rendered them vulnerable to violence and limited their ability to leave the relationship. As illustrated by an Ethiopian woman with podoconiosis, the partner’s financial support was often contingent on their expectations being met:

“…he was always complaining at everything, saying ‘why didn’t you do this and this?’ and I was telling him ‘you know that I can’t do all the activities in the house and outside the house (in the farmland).’ He used to beat me and say ‘if you can’t, go away from the house!” [23]

(Ethiopian woman with podoconiosis)

In turn, the expectation to fulfil childcare, household and work duties under the threat of violence prevented some women from resting and elevating their legs, resulting in worsened disease outcomes in podoconiosis [23]. This was exacerbated by the fact that some men obstructed their partner’s access to healthcare, and/or refused to provide them with resources required for self-care [36]:

“When I begged him to take me to the health centre, he always made excuses. Then the disease got worse as a result of the delay” [23]

(Ethiopian woman with podoconiosis)

Difficulty finding partner.

Across geographical locations, males and females with SNTDs reported struggling to find a partner, resulting in delayed marriage in contravention of local social norms [34,37,40,41,44,45]. This issue was reported in eleven (41%) studies, 82% of which reported on women’s experiences and 54% on men’s. A man with LF recognised a correlation between disease severity and difficulty finding a marital partner explaining:

“When the condition isn’t severe, then a person can get married without much difficulty. But when the sickness is very severe it can be a deformity and no girl will want to marry you” [45]

(Nigerian man with LF)

Whilst both male and female participants reported difficulty in finding a partner because of their disease, women seemed to be more susceptible to encountering this problem than men, partly because of the common depiction of males as breadwinners [34,37,40,41,45]. In their study investigating CL in Morocco, Bennis et al. [40] describe the emotional distress most commonly reported amongst women whose marital prospects had been limited by their SNTD. The following quote illustrates the gender disparities of this social risk as perceived by a Moroccan woman:

“She’ll be afraid about her future especially for the wedding. Meanwhile, in our society, an affected boy remains a man. There is no harm if he has scars” [41]

(Moroccan woman with CL)

Positive responses from partners.

Men and women in ten (37%) studies reported that being diagnosed a SNTD had not caused any decline in their marital relationships:

“My wife married me not minding my condition. She has lived and supported me ever since we got married.” [45]

(Nigerian man with LF)

Whilst data indicates that women tended to be more supportive of their partners’ needs, some women in nine (33%) studies also reported being well-supported by their male partners:

“My husband watched over me; he came [with me] to the clinic every day” [57]

(Colombian woman with CL)

Varkevisser et al. [58] also described how young Nepali husbands decided to keep the disease and treatment of their wives (all without visible deformities) hidden from their parents in order to save their marriage. Agbo et al. [36] however suggested that, at least in the case of Beninese women with buruly ulcer, husbands’ support was only temporary: when requests for time or resources exceeded the husbands’ capacity to provide, social bonds and support were weakened.

Avoidance, violence and rejection from relatives.

Across study sites, men and women with SNTDs primarily relied on their partners, children or relatives for psychological, financial, and practical assistance. As explained above, avoidance, abandonment and rejection by partners was common. Male and female participants in twenty-one (78%) studies also reported being avoided or abandoned by family members. Of these studies, 92% described abandonment of women and 77% the abandonment of men. It is unclear how frequently this happens, but a study focused on leprosy in Indonesia and Nigeria reported that 25% women felt that close relatives avoided them, in contrast to only 4% of the men who experienced such behaviour [58]. A woman with buruli ulcer expressed her disappointment at being abandoned by her sister as follows:

“When I came here to seek treatment, I gave my big sister all my savings and belongings to hold for me while in the hospital. However, she abandoned me in the most difficult moments of my life (…) nasty, no?” [36]

(Beninese woman with buruli ulcer)

Likewise, a Bangladeshi woman with leprosy remarked that she “sometimes felt some degradation of dignity” from her family [43]. This was echoed by men and women in various countries in several other studies, who reported often feeling ostracised, stigmatised and shunned by family members [36,42–44,49,57]:

“I had to move to this Leprosarium because my parents and siblings felt the disease made me a disgrace to the family” [44]

(Ghanaian man with leprosy)

Another Ghanaian man highlighted the profound impact that lack of familial support had on his mental wellbeing, stating:

“before I moved to the leprosarium, sometimes I felt like killing myself because of this sickness… My family didn’t care about me, even getting a place to live and food to eat was a problem” [44]

(Ghanaian man with leprosy)

A Kenyan man even admitted that he could easily die in his home because he could not feed himself, no one visited him and he could not walk.

‘I feel so lonely’ [54]

(Kenyan man with tungiasis)

In some cases, lack of disease-related knowledge was a contributory factor to discrimination, as highlighted by a Colombian woman whose sister initially rejected her, until finding out that leprosy is a curable disease [57]. Other mentioned reasons for family avoidance included fear of infection, perceived association between SNTDs and sinfulness, economic uncertainty, caregivers’ strain, and anticipation of social rejection. Rejection was often preceded by conflict, verbal, and physical violence [23]. Of the nine (33%) studies mentioning violence from family members, eight (89%) specified violence towards women and 4 (44%) towards men. Relatives’ violence towards women with SNTDs seemed to take place across WHO regions, whilst violence against men with SNTDs was more frequently reported in the African WHO region (75% of articles, see S2 Table).

Positive family responses.

Male and female respondents in nine (33%) studies reported feeling supported by family members other than their partners. Positive family responses included moral or emotional support, providing money or other resources, taking over household duties such as cooking and washing clothes, and helping with self-care. It is unclear how frequently this occurs, but in the Ethiopian study exploring the impact of SNTDs on family quality of life, 54% of participants felt well-supported by family members, with 21% expressing that they received no or limited familial support [49]. The encouragement and social support provided by family members was often mentioned as being instrumental to recovery:

“It was my family members that have been washing and dressing my wounds each morning (…) our children were very happy for me and were even singing out of joy when I eventually began walking with the aid of a walking stick after eight months of being bed-ridden” [34]

(Nigerian woman with LF)

Likewise, a Nepali man with leprosy praised his son for encouraging him to seek treatment, which proved to be greatly beneficial to his physical and mental health [56]. On rare occasions, contracting a SNTD even conferred positive effects to some respondents, having brought them closer to their family [57].

Despite the benefits of familial support, respondents in ten studies (37%) experienced distress due to the material and anticipated repercussions of their SNTD on their family members see for instance [36,37,49,56,57]. The most commonly mentioned consequences of SNTDs on supportive family members were a decrease in earnings and impoverishment, caregivers’ strain (particularly for girls and women), discrimination (e.g. job dismissal, social ostracism), disease onset, and a decrease in school attendance and of marital prospects for descendants [37,46,48,49]. These were due to a combination of income insecurity, the assumed associations between SNTDs and sinfulness, and the belief that the disease ‘runs in the family’ or is somehow ‘deserved’ [23,57]. The complex and potentially wide-ranging negative impacts of SNTDs on supportive family members were for instance illustrated by Agbo et al. [36], who explained how a five-year-old girl became the main carer of a Beninese mother with buruli ulcer, providing her mother with extensive support by going to the market, cooking, washing clothes and managing her mother’s medication. Although greatly appreciative of the support, the mother expressed concern regarding her daughter’s future, which she felt she had jeopardised:

“If I have to remain in the hospital longer, what will happen to her? While she is very intelligent, it will be hard for her to succeed in school” [36]

(Beninese woman with buruli ulcer)

Among the included studies, three women reportedly abandoned their supportive families to protect them from the consequences of family care [57].

Societal avoidance, discrimination, and violence.

In 18 (67%) studies, men and women across contexts and SNTDS commonly reported being avoided by community members, or altogether rejected by society. Some spoke of being barred from weddings, gatherings and neighbours’ homes [45,49]. Many were also subjected to gossip, unwanted attention, and stares [58], with men and women often feeling so uncomfortable that they opted to socially withdraw themselves [34,41–43,45,46,57]. In various instances community members were actively hostile towards those living with SNTDs, a SNTD reaction reported in seven (26%) of the studies [34,40,44,47,49,52,56]:

“They become afraid of us, and others even insult us… Some of them spit out saliva when they see us [in disgust or revulsion]” [34]

(Nigerian man with LF)

Occasionally, hostility was so severe that individuals with SNTDS were shunned or evicted from communities [44,47], especially in the case of leprosy:

“When I went home, I was like a convict that people would shut their windows whenever I pass by their house… Our barangay [community leader] approached me and petitioned to evict me from our community. Finally, they had a petition to evict me signed by my neighbours.” [47]

(Philippine man with leprosy)

Similarly, Ghanaian men and women were reportedly forced to live in isolation in forests, because it was considered taboo for people with leprosy, including those who had been cured, to live in the same place as non-affected people [44].

According to Ariyal et al. [38], Nepali women with LF faced more social societal stigma and discrimination compared to males because of the perceived value of men as breadwinners in the patriarchal society. Varkevisser et al. [58], also stated that Nepali women with leprosy suffered most from societal discrimination than men, but highlighted that deformed men had also been chased to the outskirts of the villages, where they were also neglected until they died.

Men and women with SNTDs also encountered instances of institutional discrimination, including stigmatisation by healthcare workers [57], being asked to leave restaurants, denied accommodation and jobs, dismissed from work, and not allowed on public transport [44,52,54,57]:

“One day, I went to eat at a restaurant and when other customers saw me, they started leaving the restaurant. One of the workers at the restaurant requested me to leave else they would lose their customers. I was not served” [44]

(Ghanaian man with leprosy)

Often, societal and institutional discrimination was not limited to individuals having SNTDs; it often extended to partners and family members, especially those who were supportive [23].

Low mood, depression, and suicidal thoughts.

The most commonly described SNTD impact on men’s and women’s mental wellbeing was low mood, reportedly affecting women in 19 (70%) of the included studies and men in 14 (52%). Across contexts and SNTDs, men and women frequently cited disfigurement as a principal factor contributing to their low mood [34,40,41,46,47,52]. Low mood was often accompanied by low self-esteem due to the aesthetic stigma associated with SNTD lesions, which many men and women described as “disgusting” or “a curse” [42,46]. For instance, males and females from Morocco and Ethiopia expressed that their physical disfigurement made them feel inferior to their unaffected counterparts and diminished their value [41,49].

Low mood among men and women was also due to the social reaction they received from others due to their SNTD, which, as explained earlier, often ranged from low-level microaggressions and unwanted attention to overt hostility [34,40,43,44,47]. In turn, van Netten et al. [56] also highlighted that Nepali women frequently experienced depression as a result of the difficulties arising from their economic dependence on their husbands, and concluded that in Nepal, leprosy severity and disability grade correlated to poorer psychological outcomes.

Our research also indicates that the negative emotional impact of SNTDs was exacerbated by the associated physical symptoms and complications [34,42,56,57]:

“I feel demoralized and very sad. There was a time that I was in severe pain and I prayed to God to just take my life so that I will be relieved of the pain.” [34]

(Nigerian man with LF)

The pervasive nature of SNTD lesions was also reported to be a further driver of chronic low mood and mental distress [41,47]:

“The psychological state of the affected person can worsen after receiving treatment because the problem is that scars never disappear” [41].

(Moroccan man with CL)

A Ghanaian man also described the pervasive nature of SNTD-related stigma and disability as follows:

“Many people, including my family members don’t believe I am cured because of the deformities, especially the sores on my leg” [44].

(Ghanaian man with leprosy)

This meant that discrimination and isolation often continued after the disease was cured. A Nigerian man for instance admitted that he drunk alcohol to ease off the long-term consequences of onchocerciasis [50].

Suicidal ideation was a common consequence of SNTDs across genders and geographical locations. It was reported in 11 (41%) of the studies, more frequently in the case of men (8 studies) than women (7 studies). Reasons cited included pain, loss of employment, fear of the future, burden on caregivers, violence, and social rejection [34,37,42–44,51]. Religious beliefs were occasionally cited as a deterrent from suicide:

“…if people die by ending their own life, they must go to Hell” [43].

(Bangladeshi woman with leprosy)

In contrast, several Nigerian men and women with LF spoke of praying to God to end their lives:

“There was a time that I was in severe pain and I prayed to God to just take my life so that I will be relieved of the pain” [34].

(Nigerian man with LF)

Feelings of excessive worry, stress, and anxiety.

Seventeen (63%) studies indicated that males and females across WHO regions and SNTDs experienced feelings of anxiety, excessive worry and stress pertaining to their SNTD, 88% of which described experiences of women and 59% of men. These feelings primarily related to their inability to work and resultant financial hardships [34,43]. In some cases, this financial hardship was exacerbated by the expenses incurred through costly treatments, as exemplified by the case of a Bangladeshi man with leprosy, who after spending most of his money on treatment worried about the future survival of his business [43]. Other treatment-related concerns equally affecting men and women in Yemen, Morocco and Colombia related to the perceived lack of available treatment and concerns related to the nature of treatment itself [37,41,57]. Lack of information, incomplete information, and inconsistent messages from health professionals about the prognosis of leprosy further generated anxiety and despair among Indonesian and Indian men and women [51]. Stigmatisation (real and anticipated) was also frequently cited as participants’ biggest source of emotional distress [44,46,49,56]. Men and women across WHO regions also expressed concerns related to fear of deformity, disease complications and death, as well as fear of the negative social response associated with SNTDs [37,41,42,45,46,57].

Anticipated stigma was also a key source of anxiety, as illustrated by a Tunisian man with CL who described himself as “exhausted” by his “overwhelming apprehension of being rejected by society” [42]. Among Indonesian and Nigerian men, fear of the stigma attached to leprosy also served as an encouragement to seek treatment quickly before deformities could develop [58].

Embarrassment, frustration, and anger.

Men and women in nine (33%) studies equally reported feeling frustration or anger at being ill and incapacitated, as well as anger for the abandonment, discrimination and stigmatisation to which they had been subjected. Men and women also commonly reported feeling embarrassed or ashamed of their condition [34,37,40,42,45,46,56,49,52]:

“my disease hurts me and makes me shameful’” [56]

(Nepalese woman with leprosy)

This was slightly more frequent in men (S1 Table), and closely linked to aesthetic stigma and self-stigmatisation, as well as to experiences of discrimination and job loss. In turn, individuals who felt ashamed of their lesions were more likely to isolate themselves and withdraw socially, conferring wider negative psychosocial and economic effects [34,37,44,45,49,56,57].

Low self-esteem and self-stigmatisation.

Self-stigmatisation, described in nineteen (70%) studies, was often developed as a result of low self-esteem, influenced in turn by the symptoms of the disease, fear of contagion, burden on carers, and experiences of abandonment, abuses, and discrimination. As explained earlier, men and women often felt self-conscious about their lesions, which mostly women described as “ugly”, “cosmetically embarrassing” and “disgusting” [37,45,46]. This often made them feel inferior to their unaffected counterparts [44,57]. Several participants even confessed to empathising with the stigmatisation and discrimination they had experienced:

“People in the wedding made me stay outside of the tent and they did not treat me as (if) I was healthy… How can I be equal with this disease? I sometimes agree with what they did.” [23]

(Ethiopian woman with podoconiosis)

In turn, internalised stigma prompted some individuals, primarily women, to distance themselves from their community despite being treated “normally” by others [52].

Disease acceptance and mental wellbeing.

Mental wellbeing was associated with disease knowledge, acceptance and social support. Participants in nine (33%) studies expressed that they had not experienced negative emotional effects [34,37,40,42,45,46,49,52,56]. Most were men who had not experienced stigmatisation or discrimination and felt their condition was “normal” [37,45,56,49,52], or patients who were reassured by their doctors [57]. The perception that a disease was curable and non-contagious also influenced disease acceptance and reduced the negative psychosocial impacts of SNTDs [40]:

“no one will reject you or refuse you because you have busi yasi [CL]… and it is really not a sore to be afraid of, because it is curable. It is also not contagious, because otherwise everybody in the village would get it, right?” [52].

(Surinamese man with CL)

Al-Kamel et al. [37] in turn observed that, in general, younger Yemeni generations affected by CL showed less acceptance than older adults did.

Various men admitted that having a visible SNTD scar did not confer distress:

“What’s the matter to have an additional scar? It’s normal! Even for women, it is the signature stamp of our area” [40]

(Moroccan man with CL)

Whilst generally female participants were less accepting of their SNTD and associated lesions, those at the extremes of age were less liable to stigmatisation:

“I don’t experience any social or aesthetic stigma because I’m old” [37]

(Yemeni woman with CL)

For Ghanaian and Philippine men and women with SNTDs, feeling accepted and socially integrated in their environment helped them accept the physical impacts of their disease and promoted mental wellbeing [44,47]. Participants in several studies also described the emotional benefits of receiving help from their community in the forms of encouragement, emotional support and financial assistance [34,43,45–47,49,52,56]. Various studies also emphasised the protective effect of knowledge:

“I don’t feel stigma (…) community members know about this condition and what causes it” [45]

(Nigerian man with LF)

The belief that a SNTD was the will of God also often caused some individuals to feel that there was no reason to be ashamed or afraid [34,37,47,56]:

“God gave me this, so why should I feel bad about leprosy?” [56].

(Nepali woman with leprosy)

However, various studies also described how the widely-held belief that SNTDs were a punishment which afflicted those who had sinned also caused damaging self-stigma, social discrimination and blame [23,43,44].