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October 9, 2020

Coping, Living & Thriving with Chronic Illness—3 Inspiring Women who are Kicking Ass.

 

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Two years ago, when I was first diagnosed with a chronic illness, I felt like I was hit by a bus.

I had never once imagined that I would become a part of a disease statistic. From my perspective, I ate healthy, exercised, and led a reasonably disciplined life. I had a few health hiccups, but that happens as we get older.

I never once envisioned fighting for my breath in the ER would be an experience I would write about.

In yoga, this kind of thinking would probably be termed ahamkara, aka ego, and avidya, aka ignorance. Life happens when we are least expecting it, no? The suffering comes from these assumptions, expectations, and labels we attach to ourselves. Ayurveda teaches us that there are always signs. Most people don’t just develop diabetes overnight or get a heart attack. We ignore the small signs until it becomes something debilitating. My body had shown signs, perhaps? I waved it off as something insignificant.

I was mindful of working out and the foods I was feeding myself. But I was unintentionally reckless about the thoughts and emotions I consumed. I definitely didn’t understand the role of emotional trauma in the birth of a sickness.

My chronic illness is a reality that I don’t fear. I have an illness, but I am not my illness. It has given me purpose and changed my mindset around relationships, career, self-care, and life. It’s taught me to always be mindful of what I put in my mind and body. Fooling around with my diet can lead to flare-ups and stress can trigger the pain. I have redefined my life to give it more purpose and meaning. While I am back to hiking 10 miles and doing headstands, I also honor my body’s need for rest and recuperation on a daily basis. I make intentional efforts to engage minimally with people who steal my calm and add no value to my life.

I spoke with three women living with chronic illness but who are kicking ass, and whose positivity, generosity of spirit, dedication to their profession and family has me in awe.

hinThis is what they had to say about coping, living, and thriving:

Columnist, mindfulness-based cognitive therapist and acupuncturist, Mita Mistry, has celiac (an autoimmune condition). It is a chronic intestinal condition. “For me, I have to be very mindful of what I eat and where I eat it. As a food lover who enjoys eating out, sometimes it can be really difficult. When small traces of gluten enter my digestive system through cross-contamination, I can experience extreme fatigue and muscle or joint pain, which hinders my activity (and that’s hard too because I love exercising),” says Mistry.

She tells us, “It can be hard for people to empathize with your condition or the effect it can have on you, so it’s important to talk with people who understand. Gluten intolerance or reducing gluten to combat bloating is not the same as an autoimmune condition. Self-care is really important. Be kind and patient with yourself. Get support. Do your research. Take time out to heal. Know it gets easier to manage. And don’t give up.”

Mistry also relies on acupuncture and deep-breathing when in discomfort. When eating out, she recommends calling the restaurant ahead of time to confirm if they are coeliac friendly.

Business owner, Anne McAuley Lopez, has chronic myeloid leukemia. “I was diagnosed in July 2016, just four months after getting married. Thankfully, my new husband Eddie was beyond supportive and had no expectations of what I could do in terms of work.” The first few years were a struggle for Lopez—balancing health, doctors’ appointments, and her writing business, even though her husband reminded her that the goal was for her to be healthy, whatever that looked like.

“I made schedules, rested as I could, said no to a lot of events, and said yes to some that wore me out for days. Was it worth it? Yes, because those experiences taught me how to understand what my body was telling me and how far I could go in terms of exertion. Since then, I’ve been able to take on a part-time job as a legal assistant in addition to running my writing business.”

Anne’s business grew during the pandemic and she explains how. “While COVID-19 presented challenges, I embraced the opportunities to have video calls with clients, reconnect with old clients who are now clients again, and develop a new brand! I never liked the time and energy in-person networking took and COVID stopped all of that; it was as if my calendar opened up and I was presented with more opportunities.”

Anne’s business is booming. Her cancer is undetectable. “I feel like I am finally thriving after a long rest,” she added. Lopez says to listen to your body and intuition. “Go for your annual physical; that’s how they found my CML. Do life at your own pace and don’t worry about the others.”

Pragati Adhikari, an associate editor of a Hindi women’s blog (an online publishing platform for women’s voices) and a therapeutic artist and counselor who uses a lot of art for self-healing, has polycystic kidney disease. “This disease took away a lot from me. Apart from the physical, mental, and emotional stress, it gave me a lot of anxiety and uncertainty. Until today, I cannot plan anything. This uncertainty of being unwell all the time was very stressful for my family, especially my children. I was so uncertain of life that I didn’t want to take up anything new,” says Adhikari.

After her kidney transplant, Adhikari started prioritizing herself. “I decided to make the most of the energy and time I have. Yes, I am important too,” she said. She learned to take one day at a time. She learnt to live for herself.

Today, Adhikari has a message for those reading this essay, “Stress, internalizing anger, giving up on your dreams can impact your life. Start living for yourself; start taking care of yourself. If you will not do it, no one will, and this holds true especially in the case of women.”

The company we keep, the words we read, the boundaries we set, the self-care regime we follow, the mental health measures we take—all of it impacts our overall wellness. Taking care of yourself and focusing on your well-being is radical, not selfish.

“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” ~ Josh Shipp

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