A filter to good health

Be it cancer or schizophrenia, survivors and sufferers documenting their journeys on Instagram tell us how they are fighting their conditions, one post at a time

Five hours is a long time, inside a chemo room. For 61-year-old actor and politician Nafisa Ali Sodhi, who finds stillness discomfiting, it's like an albatross around her neck. "You can't be a mareez [patient] and sit quietly," she says. Sodhi prefers indulging herself, instead. Lying on the hospital bed with tubes jutting out of her body, she wields her phone to take pictures of friends and family, sitting by her side. The photograph later makes its way to her Instagram handle.'

"My chemo watchers," she captions it. Sodhi has always been active on social media. "I really enjoy it. I like sharing my life journey there, because it is fun and it makes people happy," she says over telephone, just a day before she goes in for her next chemotherapy session. When she was diagnosed with Stage 3 peritoneal — a two-layered membrane that lines the organs of the abdominal and pelvic cavity — and ovarian cancer in November last year, Sodhi didn't steer away from doing what she knows best. She still wanted to bring a smile on people's faces. But, not by keeping her followers ignorant. "My life has been an open book," she says. That her first diagnosis had not pointed to cancer, and that, "a simple CA125 blood test" could have spared her the anxiety and uncertainty, she is now experiencing, meant Sodhi had to share her story with the world. "Knowledge is power. Why go downhill, when you can only go up from here?" she asks.

Over the last two months, Sodhi's Instagram account has transformed into a happier place than before, because despite the unwelcome intrusion of cancer, her pictures don't make you feel bleak or sad. She is still enjoying time out with family, making the most of her holiday retreat to Goa, sinking her feet in wet sand and running wild on the beaches.

There is the occasional cancer picture, too. We see photos of her doctor feeding her Christmas cake while she is on her hospital bed, and the time just before she was forced to shave her head, after "her hair started falling out in heaps". The selfies are galore, but she no longer loves her smile, because "chemo has discoloured my teeth". Despite all that, this narrative around cancer is still a very hopeful one. And, it's happening on social media. From just being a voyeuristic doorway into the lives of others, it has now become a cathartic space for many, who are battling frailty in health.

Cancer and other stories
In July last year, when actor Sonali Bendre took to Instagram to announce that she had been diagnosed with a "high grade cancer that had metastised", her journey as a cancer patient, started on a very optimistic note — #SwitchOnTheSunshine. From there on, the hashtag kept recurring between her long meditative passages on fighting the disease, the exhaustion, and vanity, when she got herself a wig. It's this positivity that actor Manisha Koirala was desperately seeking, when she was diagnosed with ovarian cancer over six years ago. "I kept looking for positive stories of recovery on social media and I couldn't find anything. It was all very hush. There was nothing to make me feel motivated about what I was going through," recalls Koirala, in a telephonic interview. It was this vacuum that compelled Koirala to warm up to social media, albeit hesitantly. She began with her bald selfie. "I felt I needed to show those pictures, because I was finally becoming more real. Of course, it wasn't a bold step. I was nervous about how I would be perceived. But, this was the process of the treatment, and if I had to tell my story for what it was, I had to shed those inhibitions."

October 5, 2018, 236
'I dislike seeing my face in the mirror. Which is a new
experience for me. I've always been happy with the way I look and never disliked anything about myself'

Shormistha Mukherjee
@agentgreenglass: Breast cancer survivor
I do this because: Just writing about it, being able to articulate and voice it, was therapy. Otherwise, it would have just stayed inside me

Breast cancer survivor Shormistha Mukherjee, decided to write about her cancer journey on her blog and Instagram, because the sympathy she was receiving post her diagnosis, started making her uncomfortable. "The most common thing I heard was 'Why did this happen to you?'," the 45-year-old remembers. Things like that would only make her wallow in self-pity, she says. "I didn't want that to happen. Also, because there is such little conversation around cancer, people just don't know what to say. I decided to talk about it, to make it easier for them too."

January 5, 298
'I'm puzzled and in a very questioning mode... seeking answers... getting confused and back on my search again... and no, these are not philosophical questions... I just go through these phases where I am researching my medical issues'

Shruti Chopra @ footprintsnoboundaries
Diagnosed with endometriosis and Ehlers-Danlos syndrome
I do this because: I want to tell people about the rarity of my condition, but with an element of thought and encouragement, because, it could help someone going through something similar, reminding them that they aren't alone

Ignorance was also the reason why Mumbai-based tarot card reader Shruti Chopra started Instagramming actively three years ago. Chopra has several debilitating conditions: at the age of 11, she was diagnosed with endometriosis — a disorder in which tissue that normally lines the inside of your uterus grows outside the uterus, making menstrual cycles agonising. In 2015, after she realised she could no longer walk without support, she was told her body was responding to the very rare Ehlers-Danlos syndrome — characterised by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. At 35, she also has arthritis, postural orthostatic tachycardia syndrome (POTS) and a bucket of other health problems, compounded by the fact that she needs walking sticks to go about her daily life. These sticks have become permanent vestiges of a life that is, on her Instagram handle @footprintsnoboundaries. "My aim was to tell people about the rarity of my condition, but with an element of thought and encouragement, because, it could help someone going through something similar, reminding them that they aren't alone."

In this, together
Starting with her diagnosis in March last year to becoming cancer-free days before Christmas, Mukherjee's stories and posts have oscillated between humour — her Bollywood meme 'kitne chemo the?' — and extreme sadness. "While I would often use humour to combat how I was feeling, I also wanted to be transparent. I didn't want everything to be funny. If I was having a really bad day, I would put up a post on that. I would also post about how difficult it was to lose my hair, how insecure I was, or how jealous I would feel of other women. Just being able to articulate and voice it, was therapy. Otherwise, it would have just stayed inside me," says Mukherjee.

And, the audience is always receptive, says Sodhi. "The messages I got from people from all over the world, touched me. That people could be so kind, caring and sensitive, when they don't even know you, surprised me. Pain and healing is internal, but when people wish you well, there's this cosmic energy around, and suddenly you don't feel alone." While the process can be cathartic, there is also the question of how much of your reality is made available out there, for people to consume and absorb.

"Yes, I am not here to sugar-coat my reality, but If I start talking about how my everyday life is like, it could get overwhelmingly depressing for an audience," says Chopra. "It actually takes me 20 minutes to stand up every morning, and taking a shower, is the most tiring experience. But I have to filter these parts of my life, if it's supposed to be therapeutic for me, as well as others."

Pune-based artist-activist Reshma Valliappan, 39, is arguably among the handful of people in the world, talking about living with schizophrenia, on her Instagram handle, @valresh. "It's not easy at all," she says. "First you have your own paranoia to deal with, then you have everybody else's paranoia. So it is a tough choice," she adds. In 2011, a non-benign tumour on the left hemisphere of her brain, caused epileptic seizures, which get triggered, when she spends too much time scrolling on her smartphone. 

July 11, 2017, 69 likes
'Quite honestly, I don't like chatting under any circumstances. I don't enjoy conversations either because I get bored easily. Most of each person within me
enjoys being alone and not engaging unnecessarily'

Reshma Valliappan@valresh
Diagnosed with schizophrenia
I do this because:It is physically painful to be on social media. But there is nobody else talking about schizophrenia, and that's pi***ng off

"It is physically painful to be on social media. But there is nobody else talking about schizophrenia, and that's pi***ng off. I did want to stop, but every time I tried, my followers would say, 'you can't take a break from us'. Advocacy is preventing me. But it has been cathartic. You can't steer away the personal from the politics" 

December 27, 2018, 12.7K
'I'm on the top of the world lookin' down on creation..And the only explanation I can find Is the love that I've found ever since you've been around..Your love's put me at the top of the world'

Manisha Koirala @m_koirala
Ovarian cancer survivor
I do this because: I kept looking for positive stories of recovery on social media and I couldn't find anything. It was all very hush

Koirala, who also recounted her cancer journey in her recently released book Healed, and now posts about life as a survivor says it was social media, which helped her connect with other people. "I have randomly reached out to people who had ovarian cancer, written to them and now, talk to them regularly on phone. I found hope in their stories."

December 13, 2018, 5612
'My hair has started falling out in heaps ... it made me cry ... not for vanity but the reality that I have cancer and that Chemotherapy is working finally sank in . I will shave my hair off tomorrow.'

Nafisa Ali Sodhi @nafisaalisodhi
Diagnosed with Stage 3 peritoneal and ovarian cancer
I do this because: Pain and healing is internal, but when people wish you well, there's this cosmic energy around, and suddenly you don't feel alone

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