Klaske van Sluis

Life after total laryngectomy 141 some situations, such as using the telephone, participants needed family mem- bers or partners to speak for them. One participant spoke about the support she required in caring for her young children: When we would go swimming with [my] kids, I always took a friend with me, because well, I had to be able to send someone into the water [if necessary] since I can’t do it myself. (Participant 7) Some participants received financial support from relatives. Others remained dependent on family members and friends for transport to the hospital or other forms of medical care. Respondents reported a dependence on healthcare as well, since they kept requiring medical support, e.g. managing problems with the stoma and the voice prosthesis. When travelling, participants preferred being treated in a specialized centre, since healthcare professionals are not always familiar with total laryngectomy. For a number of respondents, this all meant they were hesitant to leave town or go abroad. Experienced stigma Participants reported experiencing stigma regularly, especially in the form of unwanted attention: other people staring at their stoma, making (offensive) comments or asking (intrusive) questions. One participant shared her experi- ences of being bullied by neighbourhood children: (...) Children ringing the doorbell, [shouting]: ‘Witch, witch, you cannot talk!’ (. . . ) ‘Say something, say something!’ (...) To me that is awful. (Participant 4) The respondents assumed that this unwanted attention resulted from other people’s unfamiliarity with total laryngectomy. Managing unwanted attention was bothersome or difficult for some participants. When asked directly, most participants indicated that a total laryngec- tomy impacts men and women in similar ways due to the physical issues in- volved. Nevertheless, some respondents proposed that the challenges affected women face in daily life are bigger, especially in social situations. They pre- sumed women speak more and are judged on their appearance and voice more than men. Participants gave examples of women-specific stigma they had ex- perienced, including being taken for a man over the telephone and receiving comments about how they look or about their low-pitched voice. 8.5 Discussion As the stories of women with total laryngectomy reveal, both their disease and its treatment formed a turning point in their lives. Respondents made efforts to re-integrate into the social communities they belonged to before their surgery and return to former everyday activities. All found various ways to participate