Hi there, I have created this page to raise awareness on an invisible chronic autoimmune condition called Lupus. In 2007, I was diagnosed with Systemic Lupus Erythematosus (SLE) which has since changed my entire life.
For a very long time I was hiding my illness from everyone and tried to act like nothing was wrong with me. Most of this was out of denial, fear, shame, and even self-hate from thinking it must be ‘bad karma’ from my previous life. I would be in so much pain, yet I pretended to be all okay. No matter how much I wanted to be surrounded by my family and friends, I had shut everyone out of my life out of fear that no one would understand me if I told them about my condition or some would look down upon me or even make fun of my condition. I distanced myself from my loved ones because I did not want them to see me in pain and worry about me. I was leading a very lonely life which only added to my pain, sickness, depression, anxiety and self-hate.
Recently I had changed jobs and would spend nights wondering how would I explain about the various doctors appointments that I need to attend to – I don’t look sick, I don’t sound sick, my sickness is invisible! My professional work history would give no indication that I could be battling a chronic illness because I have always been a high achiever. Nevertheless, I entrusted my HR Manager and told her about my condition and I was pleasantly surprised as I felt she ‘got me’! Not only did I feel accepted, understood and supported, I started gaining self confidence and performing even better at work. That was the turning point for me.
I realized that I could have made my situation worse had I not shared with my HR Manager and work colleagues. I realized not many people know about lupus or invisible chronic illnesses. I realized life would be much better if us lupus sufferers spoke about our condition – yes, there are many people who would not believe us because our illnesses are invisible but there are many more people who would become aware and sensitive to our condition and needs. WE NEED TO EDUCATE PEOPLE!
Hence, it is with this aim, I have started my video and blog posts – to create awareness on invisible illnesses. I will share my experience of battling with lupus for the last 13 years and how painstakingly one day at a time I have learnt to accept my lupus condition, the lifestyle and career changes I have made, how doctors had given me 12 hours time to pull through my lupus flareup, how I have taken proactive steps to manage my condition, and how I have changed my attitude for my own self empowerment.
Also, I would like you to understand that it is not easy to talk about my lupus experience as it is very personal and discomforting. I am not opening up with my lupus experience to gain sympathy or complain about my life – its actually the opposite. I am sharing my experience to make everyone aware of the difficulties people like me face in their daily lives. I am sharing my experience to empower people like me to live a more fulfilling life. I truly believe that people in general are good at heart and would make an effort to support us if only they are made aware of our invisible sufferings.
Therefore, please subscribe to my YouTube channel – Lupus Comforts for hear my lupus experiences.
You can find out more about lupus on https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789