Tackling the Stigma of Chronic Illness
- Bridges M&C team
- 1 day ago
- 6 min read
Updated: 2 minutes ago
With sustained support and strong advocacy, patients can rise above stigma associated with chronic disease, and even reclaim their lives
Chronic diseases, defined by incurable long-term conditions involving physical, psychological or social challenges, are on the climb in Southeast Asia. Up to 74% of those with chronic conditions do not use assistive equipment, highlighting how patients continue to conceal their chronic illnesses, and underscoring the profound impact chronic illness stigma can have on those affected.
Also known as the 'hidden burden of disease', stigma has psychological, physical, and social consequences, often causing isolation, and depriving people of equal opportunities. Those living with chronic illnesses may internalize or anticipate stigma, leading to social devaluation or discrediting due to their illness.
The hidden burden of stigma
Stigma associated with chronic illness remains one of the most insidious barriers to care, self-management, and social inclusion.
According to Dr Joel Low, Clinical Psychologist and Director at The Mind Psychological Services & Training in Malaysia, “Compared to the West, the stigma surrounding chronic illness appears to be greater in Asia, where there is a strong emphasis on family reputation, social standing, and perceived normalcy. These influence whether individuals are open about their condition or choose to conceal it, often at the expense of their wellbeing, which could lead to worsening symptoms, and reduced quality of life."
In a healthy individual, the sense of self-concept comprises of various elements; those that they choose such as their profession, and those they are born into such as their nationality. "In a patient with chronic illness, the stigma can be so great that the disease completely overtakes their sense of self, so they become completely defined by the disease," he explains.
A study on social stigma towards patients with diabetes in Singapore revealed that less than 10% of people would be unwilling to be friends with a diabetes patient. However, about 30% opposed marriage into their families, citing concerns about disease management, healthcare costs, and hereditary risks, which further perpetuate stigma.
Stigma is not just about social attitudes but also how systems, institutions, and even healthcare providers unconsciously treat patients. Medical bias can reinforce stigma in patients, particularly those with conditions that are difficult to diagnose or not well understood. Pelvic Venous Disorder (PeVD) is one such condition.
According to Dr Sriram Narayanan, Senior Endovascular Surgeon at The Venus Clinic in Singapore, “PeVD is often not well understood by medical specialists. Although it is actually a vascular condition, it shares many symptoms with gynaecological issues such as painful, heavy and/ or prolonged periods, and painful intercourse, so it is often misdiagnosed.”
He explains, “Most women who present with pelvic pain are usually referred to gynaecologists who run tests and provide treatments for gynaecological causes of pain. Unfortunately because PeVD is not a gynaecological condition, it does not respond to treatment, which leads to the patient being unable to work, develop an unhealthy dependence on painkillers, and painful intercourse, which has a negative impact on intimacy. Many patients are told that the pain is ‘in their heads’, which increases their risks of psychological disorders.”
Breaking the silence of stigma
Despite these challenges, a growing number of patients are becoming active advocates in challenging stigma, promoting awareness of their conditions, and improving support for others with similar conditions. Their personal stories not only shed light on the multifaceted nature of stigma but also highlight the critical role patient advocacy plays in changing societal perceptions.
One such voice is Ellil Mathiyan Lakshmanan, an ostomy patient (ostomate) and President of the Ostomy Association of Singapore (OAS). Diagnosed in 2010 with colorectal and testicular cancer, Ellil underwent urgent life-saving surgery to remove the affected part of the intestines, which resulted in a stoma and a permanent ostomy pouch to contain his waste.
He recalls, “I was overwhelmed by the cancer diagnosis and struggled to accept I will be wearing an ostomy pouch for the rest of my life. I kept these private, sharing only with my close family and friends. I had questions about how people would perceive me, or if I would face discrimination if I spoke openly about my condition,"
“As a newly diagnosed ostomate, I found the Singapore Cancer Society to be helpful in providing support to patients with various types of cancer, but there was no such association for ostomates in Singapore, so I reached out to Colostomy UK, a non-government organization (NGO), based in the United Kingdom, for support. This led me to co-found the OAS in Singapore,” Ellil explains.
“One of our initiatives was providing patients with the OAS Medical ID to help them navigate public spaces and access critical facilities such as toilets for the disabled so they can change their ostomy pouches whenever required. The aim was to reduce if not eliminate fear of judgment or embarrassment. Through our advocacy efforts and growing peer support, many patients have embraced their new normal and even started to engage again in activities such as swimming or hiking,” Ellil shares.
The physical demands of these activities, along with limited restroom access and privacy can make stoma and ostomy pouch management challenging. Ostomates may hesitate to engage in these activities as they are concerned about ostomy pouch leakage and odor, which can cause anxiety in social settings. Stoma and ostomy pouches can also affect body image and confidence, especially when the patient is in swimwear.
Only 28 at the time of interview, Candy Gan is a patient living with Type 1 Diabetes (T1D) in Singapore. Multiple insulin injections and close blood glucose monitoring have been part of her daily routine since she was diagnosed around her second birthday. Unlike Ellil, the stigma she has been experiencing lies not in the treatment, but in misperceptions of T1D.
“People often wrongly assume T1D is caused by lifestyle choices, which can be hurtful. Growing up, I kept my condition private to avoid discrimination, so I often injected insulin in restrooms. Although dealing with T1D became second nature to me, I felt like I still had to hide a part of myself in social settings,” shares Candy.
“When I was 15, I worked up the courage to inject insulin around my close school friends, after witnessing a stranger injecting insulin in a busy airport. Their support and empathy gave me more confidence to do blood tests and injections in public spaces.”
Candy then felt inspired to participate in her university’s TEDx competition, and upon winning first place, she delivered another TEDx talk at just 20 years old, which raised awareness of T1D’s silent burdens.
With four volunteers, she leads typeOne.sg, a community and advocacy group for T1D individuals and their support network in Singapore, comprising about 600 members. With another T1D patient, she co-authored a children’s picture book titled 'My Name is Adam.' The book was published in Chinese and English, and tells the story of a child who is diagnosed with T1D and how he eventually finds his support network.
"It has helped children become more confident in school, especially those who have been bullied for being different," says Candy. The book is now available in public libraries in Singapore and has also been used in classrooms.
At age 12, Sofia Lovi, Interim President of the Psoriasis Association of Malaysia (PAM), was diagnosed with psoriasis, which progressed to psoriatic arthritis when she turned 13. The visibility of her skin condition and limited mobility led to relentless bullying. “I was teased and called names such as ‘robot’ due to the restricted movement of my limbs, and was even accused of having AIDS by strangers who did not understand my condition,” Sofia recalls.
These misconceptions inflicted deep emotional wounds, compounding the physical pain she has continued to endure from the disease. Family support became Sofia’s lifeline. “Not only did they care for me when I could not care for myself, but they gave me a safe space to express my frustrations. It made me realize not all patients are as fortunate as me, which is why I joined PAM,” she reveals.
Under her leadership, PAM has reached out to barbers and hairstylists through workshops to emphasize that scalp psoriasis is not contagious to reduce stigma and promote empathy for psoriasis patients. PAM has also organized workshops that focus on creating safe spaces for patients to share experiences, combat misinformation, and rebuild self-esteem. PAM has also begun working with schools to create more inclusive environments for children with visible chronic conditions.
Dr Low advises, “Patients are experts of their own experience. The first step to help patients with chronic disease overcome stigma, is openness and genuine willingness to learn how best to offer help and support them, and see the patient as a person, and not just the disease.”
“If you are a patient of chronic disease, seeking help is a courageous act of self-care, not weakness. In addition to family support, patients should connect with peers to help each other reframe their mindset so they can reduce stigma they have internalized, which can in turn help them challenge public misperceptions of the disease and reclaim their narrative," he adds.
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