One thing I have learned while living with a rare disease is to never give up

Prabhjot is a is a university lecturer in living in London. She describes her experience of living with polymyositis.

I live with an invisible rare disease called polymyositis; it is an autoimmune disease which inflames your muscles and their related tissues. No one knows the exact cause. Rare diseases can take average of three to four years to be diagnosed, however in my case it took almost eight years.

It all began in 2007 in India, I was riding a motorbike and my mum was sitting behind me. Suddenly I felt like I lost strength in my hands, and I lost control of steering. We fell off the motorbike. Luckily, we didn’t get hit by anything. Gradually, in few months’ time my arms, neck and shoulder muscles weakened, and I wasn’t able to lift my own neck or even raise my arms to hold a cup of tea.

We then sought medical help. Doctors carried out biopsies and various tests. They then confirmed that I have a disease called polymyositis. The doctor said there is no cause for this disease and there is currently no cure, but we did not give up.

I was told by doctors in India that you become highly prone to cancer in the very first year of polymyositis. As they didn’t know about the prognosis of this disease, I was told that I had six months to live. Being diagnosed at 23, I had my whole life in front of me. My perspective towards life changed that day. The first thing that struck me was how I should use most of my six months living happily and not crying or mourning about it.

At that time, I was doing my master’s in engineering in GNDU University in India. As I was sick, I came back home during my master’s dissertation. The house that was once filled with laughter, dance & pranks was changed to a quiet house. Suddenly, everybody around me started feeling sorry for me.

I decided not to live at home anymore. I started applying for jobs and I got selected as a lecturer in a university in India. I took my bags and left. That was my very first brave decision if I may say so, considering the fact that I was very sick at that time. I love teaching, therefore when I came to UK, I pursued my career in teaching too here.

Having flare ups is part and parcel of living with an auto-immune disease. During flare ups, I struggle with things like getting dressed, opening jars, bathing, climbing staircase, combing my hair, walking and my last flare up required me to use a wheelchair. I was given medication and blood plasma transfusions to keep the disease in control, which eventually failed. I am now on chemotherapy.

I started writing blogs to raise awareness of this rare disease. Raising awareness means more research into it, and hopefully a cure. Also, I am curious to find about the cause of this disease as this is not genetic - no one in my family has it. 

Once you tell people that you have a rare disease, they start treating you differently. Although, we truly appreciate their support and concern, believe me, that’s the last thing we (living with invisible diseases) want. That was the main reason that I packed my bags and moved to another city from my hometown; to stay away from pity. I never told anyone in the new city about polymyositis and everyone treated me as an equal.

One thing that I have learned while living with a rare disease is to “NEVER give up”. I really want people to understand that people who are living with a rare disease may look normal to you, but they can be struggling. I used to travel on London underground daily for work and change on 2 tubes. Sometimes, I used to get seat, sometimes not. I struggled every day with the fatigue and pain. I guess, it raises your threshold to survive pain, smile & move on with the life that you are given.

I get inspired by fellow patients who are trying to live their best life with so much courage and positivity. We need to fully embrace our vulnerability and make the best possible version of our life. The willingness to not give up - even after doctors gave up, the uncertainty of life makes you actually live and enjoy life. Life is too short to be wasted on silly things. Spread love. I feel gratitude for each and every blessing that God has showered upon me.