Life after lupus

Teens is supposedly a fun phase of life. Enjoying a greater degree of freedom, finally beginning to fathom the essence of education, partnered with an added sense of responsibility and often times, a rebellious attitude are the definitive characteristics of a teenager.

Being a teenager, what more do you have to worry about other than your grades anyway, right? Wrong. Life is not a level playing field and the circumstances presented to everyone are not the same.

Imagine being thrown into the face of such adversities that the only thing you desire during your teenage is to rest in peace. Now before you assume this is just another ordinary rant, let me assure you it is rather the gist of the life of someone who is chronically ailed.

During my carefree stage as a teenager, I survived dreadful nights suffocated by my own thoughts wondering if I would make it to see daylight, followed by tardy days that would make me want to crawl out of my own skin. This was when I was diagnosed with lupus.

Lupus, short for Systemic Lupus Erythematosus (SLE), is a rare, chronic, autoimmune disease that damages the body's immune system to the point that it starts attacking itself. Unfortunately, there is no cure for it yet, and as counterintuitive as it may sound, the only possible remedy is to suppress the body's defence mechanism and try to live with it.  

Late-teen is an important stage of life where major decisions need to be made sensibly. Evaluating your choice of educational doctrine, pondering over myriad options of subjects you may study and being able to finally apply to your desired university abroad – it sounds no less than a dream come true.

At this stage, being held back by a disease is not something anyone would want. Lupus has always been that impalpable force that has inexorably moulded all my major life decisions, from my choice of university to my selection of subjects. I was on the threshold of a bright future but was dealing with something far more precarious than I could handle, and yet had no time to sit and cry.          

Twenties is a confusing phase of life. Just when you think you have overcome the troublesome stage, you are riddled with a major reality check. After four years of robust education, you are left more confused than ever regarding your career options. Adding to that, you also find yourself in a race to secure a continuous and healthy flow of income.

Lupus is the cherry on top to this undesirable cake of uncertainty. The combination of the constant fatigue that accompanies me and the weakening of my system day-by-day makes accomplishing every task no less than a new challenge. Yet, being born in an era where the world is developing at a pace faster than we can possibly keep track of, I have to keep going.    

Life has not been the same for me ever since my diagnosis. It is a thrilling roller coaster ride where I can never tell what comes next. Six years down the line, it took me three years to understand what happened to me and a further three to accept the truth. It will take me a lifetime to adjust to this mess.

As I recollect these events and pen them down, in my mind, I also prepare myself to face yet another day, another battle. Fighting a disease that follows me like my own shadow that I cannot get rid of is the reason we are called lupus warriors. To every other person battling a chronic ailment, you are literally one in a million, and you are not alone.   

Photo: Collected