"There was no pain, but it crippled my personality."

“While in bed, riding the waves of illness, I learned to stay afloat, not knowing what was going to happen next. To live with uncertainty, even as I was suffering. And how to keep not knowing, for as long as I was alive” – writer Esmé Weijun Wang in an article for The Cut, beautifully describes what it is like living with a chronic, life-altering illness. She also talks about how her illness prepared her for a global pandemic.

The shared experience of the pandemic has left every last person scrambling to restore some sense of normalcy.

Despite the varying intensities with which the pandemic is affecting us, there is still a sense of unity. We’re all in it together. Despite knowing we are not alone, coping with these changes on some days is harder than sticking to your diet while watching everyone else on the table devour cheese-laden pizza.

What about those people who have had their world turn upside down with no prior warning, and minus the whole world enduring the same pain? People who live with chronic, life-altering illnesses. How does one cope with an unprecedented diagnosis, hold on to normalcy and find the strength to go on, as they live with the reality that their own body has turned on them?

A study focused on women with breast cancer reported that those who reached for social support, and active coping strategies, tend to deal with their diagnosis more effectively rather than those that avoid it. The three ladies we spoke to, who were each diagnosed with a life-altering illness, all took on their diagnosis head on, and worked on a plan of action.

It is isolating and exhausting, but they give us a masterclass in resilience, empathy, self-love and strength. Through their stories of how their conditions shaped their lives, how they coped, and the lessons they learnt, they impart real truths, and offer solidarity, in times when we all need it.

Three women on what it’s like to live with a life-altering illness

“There was no pain, but it crippled my personality.”

Seven years ago, Faridda K Chitalwala, 52, saw an ophthalmologist for a twitching eye. The doctor said it was stress-related and nothing to worry about. When the twitching became uncontrollable, Chitalwala found herself at a neurosurgeon’s office.

Her diagnosis? Hemifacial spasms – a nervous system disorder wherein the muscles on one side of the face twitch involuntarily. This can be a result of facial nerve injury or a tumour, but usually, there is no apparent cause.

That the condition is not painful doesn’t keep it from being a life-altering illness. “It was difficult for people to understand that there was no pain, but it crippled my personality,” says Chitalwala.

A self-confessed party animal, Chitalwala’s life took a 180° turn after her diagnosis. Botox, the form of treatment that worked best caused drooping of the mouth, slurring of speech, and made her eye slightly smaller than the other. Her confidence was crushed. “I declined invitations to all public gatherings that I used to love and didn’t want to be photographed. I felt like a completely different person,” she adds.

Her mental health took a beating too. There were nights when she lay awake in bed trying to work through what felt like a panic attack – “I couldn’t sleep because of the twitching, and there was no way I could control it. I felt so helpless.”

But when Chitalwala hit rockbottom, the trained counsellor took charge of her mental health. “I decided to be kinder to myself. If I was having a bad day, I’d allow myself to lie in bed and watch shows for two days at a time. But would wake up the next day, and start afresh,” she explains.

This life-altering illness improved her relationship with herself and her loved ones, especially her husband. “The most helpful thing he has done is that he doesn’t treat me any differently,” she says. He explained, “This condition is just a part of you. It doesn’t define you or change you. Then why should I treat you differently?”

“This helped me accept myself for who I am, and be kinder to myself.” It’s also taught her valuable lessons, “I’ve learnt to say no and put myself before others without feeling any guilt. At the end of the day, it’s just you and your mind, and helping your mind heal can make you look at life in a completely different light.”

“I acted out more after my break-up than after my diagnosis.”

Wedding photographer and ad agency producer Labony Kaushal was climbing up the stairs to a friend’s first floor home when she felt strange — by the time she reached, Kaushal was dripping with sweat, her diaphragm hurt, and she was completely out of breath – “The friend I was with thought I was having a heart attack. That was my cue to see a doctor,” recalls Kaushal.

Getting an accurate diagnosis was arduous. She visited a string of doctors but no one could figure out what was wrong. “One doctor even told me that it was all in my head,” she says. Finally, she was diagnosed with pulmonary arterial hypertension – an incurable life-altering illness where walls of the arteries leading from the right side of the heart to the lungs narrow and tighten. Because of this, pressure in the lungs rises, leading to symptoms like fatigue and shortness of breath.

She views the illness practically – “There are a couple of things that can lead to PAH, but none of these aligned with my diagnosis. So, I didn’t really know why I encountered this life-altering illness, and that was that. I was focused on figuring out how to move forward,” she says.

The biggest change that Kaushal, a runner and fitness enthusiast, had to make was to refrain from doing anything too strenuous. “I am a restless person, who can’t sit in one spot for too long, so that was the biggest change. I miss running but even if I try now, I will be out of breath so soon that I’ll no longer enjoy it. So that’s okay.”

Being diagnosed with a life-altering illness brought a shift in her perspective on life choices. Investing in health insurance became more important than material possessions, and pursuing a career for happiness trumped working round the clock to meet monetary milestones.

Kaushal also attributes some of her nonchalance to the pandemic. “Everyone is stuck at home, so, everyone’s life right now is pretty much like mine. Because I got diagnosed during the pandemic, I don’t know what I will feel like when normalcy is restored,” she says.

There is one tool that’s kept Kaushal going. Therapy. She’d been seeing a therapist even before her diagnosis. “If you have a serious illness, you need someone to talk to who is not a loved one. It takes away from the guilt that comes with you thinking that you might be burdening them, or adding to their sadness,” says Kaushal.

“I feel awkward asking for favours based on something that is otherwise so invisible.”

Paroma Soni, a journalist currently pursuing a master’s degree at Columbia university, had her first episode of multiple sclerosis (MS) at 14. She woke up with a piercing headache and blurry vision. It was six years later, in 2015, when she had her second episode that she was diagnosed. “I slept feeling fine, but woke up with a pounding headache and double vision,” she recalls.

Today, at 25, her MS episodes are much more frequent. MS is a long-term disease that attacks the central nervous system, and affects the brain, spinal cord, and optic nerves. “In severe cases, people can become completely blind, lose bladder control, or become completely paralysed,” explains Soni.

“Usually people get it when they are much older, and by 60 are in a wheelchair. But because I got it early, there is a chance that by 30 or 40 I might have the severe symptoms that people do when they are much older. I have to prepare for that,” she adds.

She chooses not to dwell on it too much, and reminds herself about how fortunate she is. “It’s a privilege that my condition is not crippling my day-to-day life. People with disabilities go through way more hoops than I do.”

Soni believes that this realisation has helped her be a better journalist. She is more sensitive towards disability issues, and a front row seat to the workings of the healthcare system, has made her more aware of all the loopholes – “I have started covering these topics a lot more, and the narrative goes way beyond just the illness,”says Soni.

That doesn’t mean she hasn’t struggled. For one, there’s a lot of unpredictability with having a life-altering illness. For Soni, the stress is more about when she might have an episode. “The symptoms include tingly muscles or visual disturbance, accompanied by a super painful headache, but not knowing when it’s going to happen is stressful,” she explains.

After every episode she has to get admitted to hospital to get a very high dose of steroid administered to her intravenously, over a few days, forcing her to put her personal commitments and professional agendas on hold. After which, she usually grapples with severe exhaustion.

“It’s weird to constantly having to apologise because of the inconvenience caused by my illness. I feel awkward asking for favours based on something that is otherwise so invisible,” she admits.

Over time, Soni has realised that it’s okay to lean on other people for help. She still finds asking for help challenging, but advises everyone in a similar situation to give it a go.

She signs off by emphasising the importance of being easier on yourself. “After an episode, it’s exhausting to even climb a single flight of stairs, which is frustrating, and negatively affects my body image. You need to force yourself to be kind to yourself. If you’re not feeling up to it, you don’t have to check all the things off your task list. And if you’ve had a busy day and missed a dose of medication, that’s okay too. Allow yourself to make mistakes, and keep moving forward,” says Soni.