Personal experiences with lupus

Have you had a bad experience with lupus but emerged stronger from it?

Are you currently struggling with the effects of lupus or medication side effects and have precious words of advice for family members and other lupus patients?

We want to hear your story!

Send us your story via email to [email protected]. Do include 1 or 2 high resolution photos of yourself as well.

The best stories will be featured in our next Lupus Link newsletters.

Your journey might just be what someone else needs to encourage him/her to fight this battle!


Patient’s perspective

Having been menaced by Lupus for the past three years, it is with great regrets that I have to admit until recently, I have not learnt to cope with the psychological stress associated with this chronic illness. It is not until now that ironically, when I’m in a relapse again that I truly realize the importance of learning to care for and love myself.

My greatest fear about the complications of Lupus – kidney involvement finally became a reality to me. Those signs and symptoms: swelling, water- retention and breathlessness started appearing just  as  I   was  preparing for my exams two months ago. So, imagine the physical discomfort, emotional unease and psychological distress that I went through. And need I mention how ‘tragic’ my performance for the exams were?

It is only now that I finally realize my mistake. My parents’ repeated warnings, ” Don’t stress yourself” had fallen on my deafened ears. I only kept defending myself, ” Don’t worry, I feel normal, I know myself. But upon reflection, how wrong all these words turned out to be!

When my condition was stabilized and under control, except for the occasional morning aches here and there, I thought I was well and ‘normal’ again and should therefore, lead a ‘normal’ lifestyle again. So, foolishly, I try to gain back ‘lost’ time in the academic race, This task was made more urgent as I, green with envy, had to stand aside to watch my friends obtain their first degrees. For the first time in my life, I was outpaced in the paper-chase. I thought I needed to speed things up a little and at the same time, perform even better than before to boost my own ego, my confidence.


But the fact is, no matter how ‘normal’ I feel or how ‘normal’ I want to feel, there’s only one truth – the cells in my body are just not normal! It is only now that I truly understand how crucial it is to accept this cruel truth and to learn to live with it”…harmoniously. Hence learning to ‘care’ for and love this new ‘me’ is the first step towards accepting my illness.

Sun Tze’s “Art of War” is useful here, This ancient Chinese military strategist advocated the importance of knowing yourself and your enemy before going into the battlefield, Since Lupus is an auto- immune disease, your own cells fighting against your very own cells resembling an internal rebellion, isn’t your enemy your own body? So, learn to understand the limits of your new physical condition, how much physical and psychological stress your new body can withstand.

The ancient Chinese philosopher, Confucius offers good advice too. Whatever we do and think, we should always strike a balance, not too much nor too little, So for our case, why not treat yourself as a delicate indoor plant which means special care, attention and treatment. To strike this balance it should not be showered with too much sunlight nor too much water. Everything must be moderate.

Or perhaps, we can learn from the “mimosa” plant. Learn to reject disturbance (undue stress) and open up its leaves only when the danger has gone off. The “morning glory” can he pretty inspiring too. Learn to except naturally and flexibly and you’ll still find your way up to the sun every morning.

It is not helpful to keep asking such “unanswerable questions like – What have I done to deserve this? Why me of all people? Why am I so unlucky? Why? Why?

Instead, we should learn to accept and live with the truth. Try to know your limits at each stage of your illness, take good care of yourself love it and treasure it. After all, there are many things happening beyond our control but at least, we are still masters of our own bodies, the ‘new-me’.

Penned by “Little Mimosa