A person suffering from disease usually strives to find someone who understands their heightened concerns. These can range from the uncertainty of leading a normal life ever again to the fear of being avoided or criticized in society. Loneliness for patients is a burden that comes along with their disease.
Feeling socially connected is a sin-qua-non for a good quality of life. The absence of which leads to loneliness. Loneliness, is a well-established risk factor for poor mental and physical health in the general population, let alone patients with a condition,
According to a study, 1 in 3 people who have faced isolation, claim that lack of support pushed them into the clutches of stress and anxiety. More than 1 in 4 crossed paths with depression. Almost half skipped meals due to lack of support system at homes.1 in 4 were unable to wash themsleves whereas 3 in 5 were unable to do household chores. All these were patients diagnosed with cancer who lacked a solid support web, at home as well as amongst friends.
60% of all the above patients, told their family and friends about their cancer. Then why would they not support?
Most patents said – their family and friends were too busy to support them, some patients did not want support from family and then there were others(41%) who did not go where to go to get support for their condition. This just sounds very disturbing!!
There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.Laurell K. Hamilton
What about all the social media around?
In today’s era of social media, with the Facebook’s and Instagram’s being our personal diaries, it is a common notion that loneliness or isolation is a disease of the past.
Social isolation is the lack of meaningful and sustained communication or interaction with friends, family, and the wider community. Having 4000 friends and 10,000 likes doesn’t seem to solve the problem. Neither does having a bunch of people to hang around every night.
“The Loneliness Epidemic” has been making it to the headlines over the past 5 years as it increases the risk of an early demise. And it isn’t surprising that negative experiences on social media platforms are considered a flag bearer for the resurgence of this epidemic. Negative experiences are remembered longer, impact harder, and lead to loss of confidence and change of perception. This can induce isolation or can worsen the condition of a person already suffering from depression or loneliness.
“We won’t get lonely for sure!”
Although patients or people suffering from the disease are at higher risk always, according to research it is the 18-22 years that constitute the loneliest generation of all time.
Cancer, anxiety, depression, multiple bone fractures, and amputations are known to have a severe hit on mental and social health. A primary reason being not having someone to share how you feel, what your struggles are, and lack of empathy from people around you and your virtual buddies over social media. Although, not talked about much, but personally, I have seen almost every patient struggle with having no community or no one to turn to for support.
Can anything be done?
A lot of Non-Profit Organisations have been trying to set up groups, similar to Alcohol Anonymous, where these people can find solace and the feeling to belonging to a community where the other person understands their life.
Social platforms like Facebook, Reddit, and Quora have failed at creating a community for these people as they have become mediums of social entertainment, leading to a lack of empathy for other persons’ problems. They have become platforms to gain likes and social validations.
PregBuddy and Healofy target women, who are either expecting a child or parents who have daily life problems related to their children. These can be discussed on these platforms with other women, who have had similar experiences during their times.
Inspire.Com provides a more holistic platform and has multiple groups for people suffering from diverse diseases and conditions. It connects the doctors and patients and lets them interact in a more informal setup. They cater to 2,000,000+ patients on their platform make them the market leaders.
What about India?
PregBuddy and HealoFy have been market leaders in this stream, but none has made a mark or has become a household name yet. Indian health care sector and patient mindset is a tough nut to crack.
Indian doctors, many of them, won’t work for anything that has a low return of investment for their time. Most don’t believe in connecting to a patient over social media. Getting them on such platforms in India is a tenacious task.
Indian patients, on the other hand, are not well versed with technology to start with. Even if they have a multimedia mobile phone, typing in queries is a little too much to ask for. ( Precisely why a passives infotainment application like TikTok was a hit) Also, Indian patients would suffer and compromise on the quality of life but not spend extra money to become a member of any community.
Indian society has stigmatised sick people. People hiding their diseases, lying to the doctors, not telling trivial details, socially isolating people suffering from cancer and HIV are things we have heard since times immemorial. And howsoever westernised our culture might be, I working in Delhi, get to listen to the most bizarre reasons of why people are socially isolated. ( One of my patients told me, his brother doesn’t let him play with his kids, because he believes that playing with an amputtee will bring bad luck)
We need to take care of this section of our population together. Via social media or supporting NGO’s or changing our attitude. Today it is someone else tomorrow it can be me or you. Working on this together and creating a strong support web for all of our near and dear ones is the only way forward.