SINGAPORE – Psychologists and patient advocates say those who open up about their journeys with serious illnesses may be able to build a better support network and feel less alone battling their diseases.
But sharing the experience publicly on social media may only be for those who are more comfortable with the possibility of negative attention.
More people are tapping the power of social media to share their struggles with life-limiting diseases. A recent example is editorial consultant and breast cancer survivor Jill Alphonso, who bared the scars of her mastectomy online.
Annabelle Psychology clinical psychologist Maximillian Chen, who has more than five years of experience helping those with chronic illness, said he has seen more patients willing to talk about their serious illness, although a majority of them still tend to keep this knowledge limited to family, friends and colleagues. These patients tend to be more young to middle-aged adults.
Mr Chen said when one feels the need to conceal an illness, the pretence can be stressful to sustain.
“It is often a relief to drop this burden, and allow others to know and support you. Talking to others about their illness can dispel the shame and guilt that sometimes comes with being diagnosed with a disease,” said Mr Chen.
However, Mr Chen pointed out that there is a difference between sharing with friends and family, or patient support groups, and doing so online.
“For example, on patient forums, you’re sharing with people who have similar issues and may be able to provide you support that can feel more relatable. Before patients with a serious illness share their story on social media, they have to have a certain acceptance of themselves and their illness... So if people have disparaging comments, patients are more immune to the negative effects of it,” he said.
Another upside of open sharing is that it has the impact of destigmatising and raising awareness of a serious illness, said Mr Chen, citing how US singer Selena Gomez’s sharing about her lupus diagnosis led to a spike in Google searches for the disease.
“Often, when we are able to put a face to an illness, this can make it harder to hold prejudiced views of it. These sharings also help to normalise illness as an inevitable part of life,” he said.
Ms Ai Ling Sim-Devadas, the deputy director of advocacy and engagement at Nanyang Technological University’s Lee Kong Chian School of Medicine, concurred. She said such open sharing can be inspiring and motivational to others who are going through the same struggle.
She said: “The message is powerful: You may be hurting and it may be hard, but this is not how you will feel forever. Instead, you can live a full and meaningful life with the illness. Such sharing is a big step towards demystifying illness and disability. It tells us we are not alone.”
Ms Sim-Devadas, who is herself a breast cancer survivor who has undergone chemotherapy and mastectomy, said that sharing can also educate and inspire healthcare professionals to improve care in clinics and wards.
The co-chair of a community of patients and caregivers – the SingHealth Patient Advocacy Network (Span) – said that there is an increasing number of patient advocates in Singapore who have partnered with hospitals to share their experience during healthcare improvement project meetings, staff training and conferences.
One outcome of such sharing is a plain English glossary by Span that explains 150 commonly used medical terms in simple, everyday English.
“Patients also find medical jargon difficult and puzzling for them, and that can get in the way of good care. We have also been going around to promote the importance of plain language when communicating with patients,” said Ms Sim-Devadas.
“Be it raising awareness of a disease, or rallying a support network around themselves, patient stories can be healing and can inspire others to elevate the patient experience.”
