Anushka Thacker* was 13 years old when she was prescribed contraceptive pills to control the excessive hair growth on her body.
By the time she was 18, she had developed PCOS and was taking medication for hypertension and pre-diabetes, both effects of the former. Her condition demanded that she get blood work and sonographies done regularly. But she was also a fresher, so taking half-days and leaves could not be a frequent practice.
Her boss claimed to have understood Anushka’s condition, until the day she had to apply for another half-day. “Don’t tell me you’re going to your doctor again!”
Conditions such as PCOS fall in the list of long-term conditions without a cure.
Chronic illness ﹘ which is defined as a long-term health condition without a cure ﹘ is widely misunderstood. Because several serious diseases fall under its banner (asthma, cardiovascular diseases, dementia, diabetes), many tend to believe that young people cannot have it. These conditions often impair the functioning of the organs, which expectedly happens at an older age.
But as is with Anushka, that isn’t always the case.
Working As A Millennial With Chronic Illness
A working paper published in early 2020 stated that around 30% of the Indian working population (between 15 and 64 years) has at least one condition that makes them more vulnerable to COVID-19 complications. “In India, there is a premature onset of non-communicable diseases, with one in three adults developing hypertension, and one in 10 have diabetes,” said Dr. Giridhar R Babu, professor and head, Lifecourse Epidemiology, Public Health Foundation of India.
It can be tricky to manage one’s health while working a demanding job.
But it’s even harder to do so when you’re expected to put yourself out there and experience life as viscerally as you can, because you’re only young once.
So, what’s it like to be young and ill? I spoke to three women to find out.
Juggling Health And Work
Riya Tyagi and her family had the shock of their lives when she was diagnosed with Type-1 diabetes at the age of 18.
With her whole life ahead of her, Riya struggled to come to terms with her condition. “I didn’t get out of bed for a month or two. I was coping with something that was not supposed to happen. I was the perfect kid.” Her symptoms mostly included low energy, for which she had to restrict her diet and take 4-5 jabs of insulin every day.
Most chronic illnesses are touted as lifestyle problems, the solutions to which include diet control, medication and supplements, and maintaining a work-life balance to reduce stress. But having a stringent routine can be extremely difficult in your 20s, when you’re expected to hustle, gain valuable experience, and pay your dues.
With a demanding job role and unpredictable work hours, how regularly can a young woman bring a dabba full of home-cooked food that can sustain her through the day?
“I need a lot of breaks and periods of rest in between [my work hours], but I really don’t get any. It’s worse when I have to work on weekends, which happens a lot. Working on full steam for weeks without a break means I run out of steam altogether,” says Mira Ravi*, a 27-year-old copywriter. Mira was diagnosed with ADHD and bipolar disorder at 20, and an autoimmune condition at 24. Given the demanding industry she is in, getting proper breaks and weekends off is enough for her to get some respite from fatigue, anxiety, lethargy, and other symptoms that govern her days.
Living with a chronic illness as a millennial means balancing the world’s expectations of you as a young person, along with a health condition that doesn’t allow you to live fully.
Riya, who runs her own fashion label, says, “There was a lot of judgement from my family and friends. I was called a ‘defective piece’ and was told I wouldn’t have it easy. I can’t remember how often I’ve been treated unfairly because I was diabetic.”
But the show must go on, and living a normal life while embracing the glitch is the goal. “I am strict about my diet and not over-exerting. If this means saying no to parties or hanging out during a busy week, so be it,” says Mira.
Riya concurs: “You just have to pick yourself up and repeat, “I am successful. I am working so hard. I just have to give my best today and at this moment.””
Proving Their Professionalism
Treading one’s career path with an illness is easy on some days, and rough on others. The challenge partly arises from external factors ﹘ the lack of understanding of chronic illnesses, especially ones that are closely related to mental health.
Bhawna Khattar was diagnosed with Cyclothymia ﹘ a condition that falls under the broader umbrella of bipolar disorder ﹘ in 2020. Her symptoms include bursts of high energy or hypomania, followed by depressive episodes that affect her ability to function, much less work properly. The biggest challenge she faces? Feeling misunderstood.
“When I was working full-time, I shared my condition with my team. I felt a sense of judgement, though. There’s more judgement around women because they’re generally considered moody.”
Being in a job role that kept her on her feet most of the time, Riya too had to share details of her condition with her colleagues. While she was lucky to have a supportive and encouraging boss, she had to continue proving herself. “I make it a point that no one questions me about my work and I make sure that I make up for [my low energy phases] later. People will be disappointed, and you don’t want that.”
Proving themselves as thorough professionals is on the top of their radar also because in the cut-throat formal workforce ﹘ which does not respect time, boundaries, or fair pay ﹘ illness is seen as an inconvenience. This prohibits them from sharing their condition openly.
“Sometimes I’m afraid they’ll think of me as attention-seeking or as someone who just complains all the time. I also feel guilty because my coworkers put in the same amount of hours and hard work and don’t make excuses,” shares Mira.
Bhawna started working as a consultant in the development sector so she could have more time to take care of her health. “It helps me draw boundaries in places where clients don’t know about my problem. It also helps to clearly communicate your deadlines.”
In some ways, the new work-from-home situation has helped many people with chronic illness gain control over their health, which would otherwise be exacerbated by stressors such as travelling and eating out.
Having A Support Group In Your Manager And Coworkers
Despite it all, having a support system makes work a little less stressful. An understanding boss and supportive colleagues can make a world of a difference.
Riya remarks the effort her manager (and mentor) took to understand her condition. “He would keep something sweet with him in case my blood sugar levels dropped.” But how does one gather the courage to speak about their condition? “Be strong and open. You can’t be dependent on your company or on anyone. Only you can take care of yourself. The support will come.”
But support doesn’t always have to come in the form of flesh and blood.
Unfortunate as it is, many chronic illnesses are not covered by health insurance, which results in patients spending out of their pockets.
“Healthcare is expensive. It needs to be more accessible,” says Bhawna. Mira concurs: “I’m sure I’m not the only one who thinks health insurance isn’t chronic-illness friendly.”
So, what’s the way forward? Following a model of empathy.
The pandemic has taught organisations the importance of employee well-being.
The introduction of mental health leaves, menstrual leaves, and updated health insurance policies has given employees hope that their employers are looking out for them; this should extend to those with chronic illnesses as well.
“What offices don’t realise is that 8 hours of work and assured weekends are the first sign of commitment to the big buzzword ﹘ diversity and inclusion. They get hung up on accessibility and tech solutions without realising that good work-life balance is equally essential for good health,” asserts Mira.
Having open conversations around mental health and illness is equally important. Says Bhawna, “We see ourselves as resources, which makes us internalise guilt. We need to talk about emotions in a capitalist environment. Labelling your emotions is a great start.”
Organisations can make concerted efforts to open up spaces where employees can share their pain points and problems with higher authorities for concrete solutions, be it in the form of helpline numbers or employee resource groups.
Chronic illness can be expensive and all-consuming. Because we spend a majority of our lives working to earn a living, simply moulding ourselves to fit the corporate structure cannot cut it. Being a young person in the workforce is exciting and full of promise, but it doesn’t have to be painful.
*Names have been changed to protect the identity of the individual.
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