“I consciously choose not to focus too much on being sick,” Sushita says. “I find that the more I think about it and deal with my medications, the sicker I feel. So, I put the focus on my life, not the illness.”
This philosophy has become essential for navigating a life of teaching, cooking, learning Indonesian and Spanish but also having medical challenges adding up. “My health issues started quite early, when I was 19,” with an autoimmune condition “not visible on the outside and initially hard to diagnose.” From there, it became an annual ritual: “Every year, a new illness was added.”
The list now includes Type 1 diabetes, ankylosing spondylitis, MĂ©nière’s disease, maladie d’après Frederikson, insulin resistance, chronic inflammation of the kidneys and pancreas, and a rare parasitic disease. Her doctor, reviewing the eight conditions, stated the obvious: “Well, that’s a lot—eight chronic illnesses should be too much for just one person.” Not included in the list is her overcoming stomach cancer in 2021.
Adapting to Chronic (Hidden) Conditions
“But you look so well!”
Sushita and quite some other interviewees hear this constantly, a familiar refrain for anyone whose struggles remain invisible because there is no cast on an arm or similar to have others understand and empathise. People don’t see the mornings when rheumatism locks her joints, when she can’t put on her shoes, or when she must wait an hour and a half for her motor skills to return.
“I sometimes think if I had a visible illness, it would be easier,” she reflects. “I wouldn’t have to constantly explain why I can’t do something.”
The gap between outward appearance and internal reality has transformed her life completely. “I used to live a very active life, but that has been completely reduced to just managing to go to work in the mornings, and after that, I can’t do anything else.” Afternoons require rest. Evenings are for cooking and the sofa. “Skiing, martial arts, all the hobbies I used to do—I’ve had to give up everything.”
Reading has replaced physical pursuits. Invitations for walks—”almost impossible just now”—must be declined when her conditions flare up. “It’s hard to accept, especially because I still feel young. One of the hardest parts for me right now is having to constantly ask for help, because it makes me feel old.” Of course, some days and sometimes weeks are better than others, but it takes great intentionality for her to navigate the uncertainty her conditions throw at her.
A Strategy for Living
To protect her energy and peace, Sushita has developed a careful approach to managing not just her illnesses, but her presence in the world. When her body rebels, she chooses strategic withdrawal.
“My sister will call and ask what’s wrong because I’ve gone quiet,” she acknowledges. During these times, she opts for complete silence: no calls, no messages, no explanations. “I do this because I don’t want to burden others with my struggles. I don’t want special treatment.”
This rhythm has become part of her life. “There are good times and bad times, and that’s normal. During the bad times, I retreat completely, and people might not hear from me for days or weeks. But then, things get better again, and I re-emerge.”
When people ask about her conditions, however, she’s “actually very happy to talk openly.” She’s noticed the impact: “There are also very good reactions—people are immensely grateful when I share a bit about my illness and how I live with it.”
Navigating a World on High Alert
There are additional layers of challenge when traveling alone when you are a petite dark-skinned Indian woman who is often perceived as Black – and hence facing racism and sexism on a regular basis.
“When I’m traveling with my son or partner, I’m treated much better. When I’m alone, I’m often stopped and questioned. There is a lot of racism, and when you add my hidden disabilities on top of that, it becomes… harsh.” What is invisible to anyone not affected by this intersection of gender and race is a daily lived reality she has to actively manage because most societies haven’t been able to process what life is like as a visible minority: “When I’m with others in a group, never a problem. It’s just when I’m alone that people start acting out.”
Airport security has become a particular source of anxiety. “I feel fear going through security, where you show your passport.” Her worst experience came arriving in Madagascar with a brand-new passport. “I was the only person out of a plane of over 300 people who was detained. The staff insisted my passport was fake.” While her (white) boyfriend was waved through, she was held for multiple rounds of back and forth questioning her as if they had caught a criminal in the act until machine verification confirmed the passport’s authenticity. “I was in tears. They only let me go after a supervisor intervened.”
Similar patterns follow her across Europe. “In England, in London, they always stop me. They ask where I’m going, what I’m doing, where I come from, where I live.” The implication is clear: “They assume I want to come live in London, even though I was just visiting my sister.” She notes the irony: “With a Luxembourg passport, normally you can go everywhere, but not me. I’m simply stopped everywhere.”
Her solution for frequent trips to India involves pre-arranged airport pickups. “The hotel I stay at provides excellent service; they pick me up directly from the airport, so I don’t have to navigate the crowds of hundreds of thousands of people.” She clarifies: “That sounds super luxurious, but it doesn’t cost that much—in India, these things aren’t so expensive.” What matters is knowing “when I land, someone is already waiting for me. I don’t have to fear being robbed or harassed as a solo-traveling woman.”
“When someone tells you their story, you see the human being behind it. You realize you’re not alone, because so many people feel alone, especially when they see themselves as a ‘case.“
Workplace Battles
At work, Sushita faced the skepticism that many with invisible illnesses encounter in professional settings. “I was mobbed at my job for years. My old director didn’t believe I was sick and even threatened to send a control doctor to the hospital bed I was in to verify I am actually sick and in hospital.” The new director is treating her humanely and respects her as a person, as well as the legal rights she holds.
But with the former one, she had stand her ground: “Fine, bring on your control doctor, I have nothing to hide. I am on this floor, this room.” The doctor never came, but the pressure remained constant. Every year on September 15th, she was essentially threatened that she would be retired “Madame should take per pension now.” “There was no attempt to talk to me, to ask me how I am doing, to figure things out. Every year the same thing. It was a terribly hard time, and it led to periods of depression.”
Learning to Reach Out and Bounce Back
“Every diagnosis is like a verdict that shatters your world,” Sushita reflects on the pattern that has defined her adult life. “You don’t expect it, your world collapses, and you have to rebuild it. That takes time and a lot of inner strength. And just when you do, the next illness arrives. It’s been like that for over 20 years.”
This constant rebuilding affects everything, including relationships. Her last partner “couldn’t deal with my illnesses at all. He didn’t see them, so he didn’t understand them.”
Yet despite the immense personal cost—”tears, courage, everything”—Sushita is committed to breaking the isolation that so many people with chronic conditions experience. One hard-won lesson that should be understood as a takeaway is the importance to reach out to others when you are down: “When you seek help and talk to people, when you open up, you realize that different people say, ‘My son has something similar too.’ Many people have various hidden illnesses—they never talk about them.”
For Sushita, finding peace has come from this dual approach: fiercely protecting her own well-being while openly sharing her story to help others. It’s how she maintains control in a life often shaped by forces beyond her command.
“Through all of this, you have to find the strength to get back up. You have to stand up for yourself, be your own person.” Eight chronic conditions have taught her exactly where to spend her limited energy and how to preserve it. “When you become at peace with yourself, then you also become at peace with your environment.”
