According to statistics, there are approximately 125,000 registered severe mental disorder patients in Shanghai, with many other individuals suffering from hidden and mild mental illnesses who have not received professional treatment. The strong “sense of shame about the illness” leads them to choose to “cocoon themselves.” How can these groups find a way out?
An eighty-year-old woman in Shanghai breaks into tears, what to do with her ill son?
86-year-old Aunt Jiang from Shanghai has a son, Mr. Han, who is nearly sixty years old and has been suffering from a mental disorder for over 30 years. This has made them live cautiously over the years.
Aunt Jiang said that she and her family have felt like they have been walking on a lonely bridge all these years.
Aunt Jiang: As family members, we find it hard to talk about this illness and fear of others knowing about it. Once, during an interview with a reporter, we couldn’t hold back our tears, the suppressed emotions, society’s lack of understanding, and family pressure. We hope that society can understand and be inclusive because they need to interact with society and integrate into it.
Due to taking care of Mr. Han’s illness and his daily life, most matters were handled by his parents. However, with the father passing away and the mother getting older, the whole family gradually fell into difficulty. It wasn’t until an unexpected incident and a neighbor’s compassionate gesture that changed their lives…
Recalling, Aunt Jiang said: When the PVC plastic caught fire, he (her son) cried out, the neighbor, Teacher Gao, saw this from the window and immediately came over to turn off the gas. Teacher Gao didn’t blame or reprimand him, which touched him deeply.
The neighbor’s understanding and help provided immense consolation to Aunt Jiang and also made her see that her son is willing to learn skills and interact appropriately with society.
Teacher Gao, the neighbor: Because he has limited exposure to society, they cherish him in the family; he doesn’t even know how to do household chores. Teaching him to develop a habit of self-reliance, such as cooking, washing rice, and doing laundry, made a significant change in just two to three months, he became brighter. Having such a family member puts a heavy burden not just economically.
Rehabilitation service projects are continuously advancing, but why do some people refuse them?
Statistics show that the ratio of mental disorder patients within communities is usually around 1% of the total population.
Coincidentally, Changfeng Street is implementing a community rehabilitation service project for mental disorders, identifying willing patients for regular services provided by the community, including training for self-care abilities, cultivating hobbies, and more. Mr. Han himself and his family gladly accepted.
However, the project leader mentioned that families of mental disorder patients willing to accept external help are few due to the strong “sense of shame about the illness.” For most mental disorder patients and their families, “cocooning” is the norm.
Project leader Luo Gengwan: They feel a need to protect themselves, reject any external interference; our project has invested a lot of time and effort in regularly updating and inquiring, understanding their status.
Social worker Zhu Xing has contacted 11 families of registered mental disorder patients in her jurisdiction, of which only 2 households have shown willingness to discuss further during home visits.
Zhu Xing mentioned that this is already considered a “jackpot”; she once waited for several months just to meet with a family member.
Zhu Xing, the social worker: None of their family members want us or anyone to visit them; the reason the service recipients are unwilling is that they fear being labeled.
As per the Ministry of Civil Affairs’ “Integration Action for Mental Health,” by 2024, Shanghai aims to implement mental disorder community rehabilitation services in over 65% of streets (townships), with a registration rate of over 45% of recipients receiving standardized services. However, even after two years of being an early pilot of the program, Ganquan Street has barely reached 10%.
“They don’t want others to know there is a patient like this in the family; it takes a lot of effort to gradually make contact with them, let them understand slowly, and resolve their psychological concerns.” Sun Yongbo has been a disabled assistance worker in the community for over a decade and has established some basic trust with some patients and their families.
47-year-old Liu Ming, recommended by Sun Yongbo and Zhu Xing, participated in the community rehabilitation program. His 78-year-old father occasionally worries about the future in case of any changes at home.
After some time of learning, Liu Ming can now “cook and laundry” independently and even participate in some auxiliary community services. Liu Ming said, “During the learning process at the institute, I made some friends and hope to engage in more activities.”
Although progress isn’t easy, community pilot projects providing rehabilitation services with professional help aim to offer patients an opportunity to acquire life skills outside their homes, which might help these families see some brightness after breaking free from their “cocoon.”
One term that is repeatedly mentioned is “sense of shame about the illness.”
It is mentioned that the vast majority of mental disorder patients do not exhibit aggressive behavior under normal circumstances. Community rehabilitation interventions can to some extent reduce their relapse and hospitalization rates. Moreover, as their caregivers age, ensuring their future livelihood requires them to acquire more survival skills and gradually integrate into society.
Expecting that this community rehabilitation service system in Shanghai can gradually make the “silent few” willing to let down their guard and reestablish connections with society. Simultaneously, reducing discrimination and bias also requires efforts from the entire society.
(Original title: “Shanghai has as many as 125,000 patients of this kind! Someone cried out of the blue! Most are difficult to talk about…”)
