Living with a chronic illness: a patient’s perspective

From processing a diagnosis to an uncertain future, managing life with a chronic illness is a challenge. But here, our expert columnist Nikita Thakrar shares her own lived experience, and highlights some of the tools that have supported her on that journey

I was a fit, healthy, and ambitious 26-year-old when I got diagnosed with an incurable illness. The initial health scare, followed by a series of medical tests and, eventually, major surgery, led me through a mysterious sequence of events. I recall feeling as though my whole world had been turned upside down during this time, as I was at the peak of my career, yet my aspirations were now sidelined. The biggest fear I faced was not knowing what I was dealing with, and later when I was diagnosed, the uncertainty of my future.

I will never forget the day that the doctor told me the name of my rare disease. I naively asked for a leaflet with more information, but there wasn’t one, and they urged me not to Google the condition. I ignored the advice and when I did some research, I read that life expectancy from the time of diagnosis was a maximum of five years.

It wasn’t instant, but after the initial shock and grief, I made a conscious decision that if I did only have five years to live, then I would do so with maximum impact. I was determined to live life to the fullest and leave a legacy.

Today, 12 years on, I am thriving in all areas of my personal and professional life. Once I crossed that five-year mark, I felt empowered to take my health into my own hands, and subsequently started a unique healing journey. Alongside medication, here are some of the most valuable tools that have supported me:

A positive mindset

We hear about the importance of positive thinking, but in my situation, this really was a game changer. With a background in Natural Language Processing (NLP), I paid attention to my thought and language patterns, and actively worked on reprogramming them.

Even if there were days when I was afraid, upset, or feeling sorry for myself, I would make the effort to compassionately challenge negative thoughts, using positive self-talk and reframing methods. Perceiving my situation differently allowed me to see the bigger picture, and be grateful for my blessings, rather than emphasising my problems.

Emphasis on what I can control

Gratitude shapes our mindset, and by being aware of this every day, it starts to become ingrained into our subconscious minds. For example, when I go to a hospital appointment, I tell myself how lucky I am to have access to medical experts. Whenever I take my medication, I feel thankful for the pills that manage my symptoms.

Adopting a positive frame of mind also initiates behavioural changes, i.e. if I go through a flare-up, I take this as a reminder to slow down, or my body’s way of telling me to re-prioritise and do things differently.

Holistic therapies

I found Reiki healing by serendipity, and have explored this alongside other healing techniques. Working with energy has been invaluable to support my chronic illness over the past decade.

I believe that understanding the mind-body connection and the role of energy healing has enabled me to regulate my symptoms and side-effects. Having a daily self-care practice is a vital part of my regime, and on days that I miss it, I notice that I often end up having negative side-effects and less resilience.

Energy healing has contributed to my positive outlook, pain management, and increased energy levels. Today I have a very social and diverse lifestyle, and I put this down to my combination of tools and techniques that I draw from as coping mechanisms.

Yoga and meditation

Finally, the physical, mental, and emotional health benefits I have gained from yoga postures have contributed to my flexibility, range of motion, and joint health, making daily activities easier. Yoga helps me to manage pain by promoting relaxation, improving blood flow, and supporting muscles. I have been able to build strength and stamina, in a way that doesn’t fatigue me, while improving my overall wellbeing. On the days that I practise yoga, deep breathing, and meditation, I notice a significant difference in the quality of my sleep, allowing me to feel refreshed and ready to take on the day.

Overall, the combination of nurturing a positive mindset, accompanied by energy healing and yoga with meditation, has had a profound impact on how I cope with my condition. There are still days where I feel low and have fears, but having these tools have given me a sense of control. They have also taught me to ignite self-compassion and acceptance towards my situation.

Every person’s journey with chronic illness is unique, but I hope that if you’re looking for tools to complement support from your doctor or medical professionals, these are a few ideas that might spark your interest.

Since my diagnosis, I have developed faith, and I now draw on the belief that everything happens for our greater good. I enjoy sharing my story with others, to inspire and uplift them, as imparting my experiences gives me a great sense of purpose.