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Why does this rare disease make people feel lonely and ashamed? What is the social impact of HS?
In today’s world, there are many rare conditions that impact the lives of patients, often leaving patients feeling alone and ashamed. Hidradenitis suppurativa (HS), also known as acne inversion or Werner's disease, is one of them. This long-term skin disease causes swollen and inflamed bumps that are often painful and can break open, releasing fluid or pus. The most common affected areas in people with HS include the armpits, under the breasts, perineal area, buttocks, and groin. As the disease progresses, the activities patients can perform in daily life are severely limited and may lead to social impairment.
“People with HS often feel ashamed in social situations, which makes it more difficult for them to seek support and understanding.”
The impact of HS: more than just physical limitations
HS is not only a physical disease, but also has far-reaching social and psychological impacts. Many patients may feel lonely after developing the disease because their symptoms are not obvious and difficult for outsiders to understand. The condition causes them to face difficulties dressing and socializing, and many choose to hide their symptoms out of fear of what others will judge them. Feelings of loneliness and shame are exacerbated and can lead to mental health problems, such as anxiety and depression.
"A study found that 21% of HS patients showed symptoms of depression and 12% developed anxiety."
The impact of HS on personal life
Research shows that HS can have a significant impact on patients’ quality of life. Patients often experience difficulties in work and social activities, which may even affect their career choices. Ongoing pain and discomfort make it difficult for patients to sit or stand for long periods of time, which physically limits their range of motion.
“People with HS face higher social stigma than other skin diseases, which not only affects their self-image but also makes it difficult for them to maintain healthy relationships.”
The importance of finding support and understanding
Many people with HS often need more social support when facing their condition. But due to society’s poor understanding of this rare condition, patients often struggle to seek help. Communication with friends and family becomes especially important. Most of the time, it is only when patients are brave enough to share their experiences that friends and family can truly understand the pain and challenges they are going through.
“Many HS patients report feeling a spiritual release after sharing their experiences with others.”
Treatment and Support Systems
Currently, there is still no cure for HS, but a variety of treatment options are available, including surgery, hormonal therapy, and biologics. These methods can help reduce symptoms and improve patients' quality of life. In addition, professional psychological support and social interaction can also significantly improve the patient's mental state and reduce loneliness and shame.
“A multidisciplinary medical team can provide comprehensive support, including psychotherapy, to help HS patients rebuild their sense of self-worth.”
Social cognition and the need for change
In order to provide better support for HS patients, we first need to increase society's awareness of the disease. Medical institutions, social services and the public all need to have a deeper understanding of HS, which can help patients reduce their courage to share their experiences in depth and increase their willingness to seek help. By transforming HS from a rare and stigmatized disease into a more accepted condition, we may be able to create a more supportive environment.
The life experiences of HS patients and the challenges they face deserve more attention. Is society’s support and recognition sufficient in this regard?
