L N Ng
A reprint made available from the Lupus Association of Singapore
Let me first of all, thank the Lupus Association of Singapore for the opportunity to voice out how young adult patients like me cope with SLE. I hope that through my presentation, doctors and care-givers will be able to gain an insight into the mentality of young patients: our worries and concern.
I have been suffering from SLE since 1992. For the last 5 years, I went through 3 cases of lupus flare. Sadly, it was only during the latest flare in 1995 which involved my kidneys that I was shaken up to the harsh reality that lupus will always be a part of me. What happened in 1995 was a painful but important survival lesson for me. Hence, when I was 'normal' and physically well, I disregarded all warnings to engage in stressful activities, Instead, I tried foolishly, to gain back 'lost' time in the academic race. How silly was I! Needless to say, lupus finally overcome me because exam stress activated the disease again.
Foundation : accept the reality of SLE
From then now, I realised the importance of accepting the chronic status of SLE, and from there, to learn to cope with it and its side-effects. Hence, the foundation for coping with SLE is to accept the possibility that lupus will stay with you for the rest of your life. Once, this foundation is well laid, coping with SLE will be less emotionally strenuous.
Basic strategy : know your enemy ie. yourself
Sun Tze's "Art of War" is useful here. This ancient military strategist advocated the importance knowing yourself and your enemy before going into the battlefield. Lupus is an auto-immune disease, your cells fighting against your very own cells. This actually resembles an internal rebellion. You are fighting against yourself! Hence, to 'conquer', or rather to live harmoniously (since it is going to stay with you for life) with lupus, I learnt to understand the limits of my new physical condition. For my case, it means knowing how much physical and psychological stress my new condition can withstand.
Catalysts identified and solutions formed
Upon much reflection, indeed, I realise that a major catalyst of me relapse had been examination stress. This was brought about by unrealistic academic expectations of myself. I was pushing myself too hard to boost my own ego and confidence which were earlier destroyed by lupus. The natural solution for me then, is to lower my own expectations and learn to perform within my new capabilities. I try very hard not to compare my 'new-self' to my old-self which was full of ambitions and expectations. Instead, I learn to be humble and be contented with the knowledge that whatever I had done, I had put in my best effort.
Physical strain also contributed to my relapses. This was inevitable linked to examinations. In the process of preparing for examinations, I neglected my sleep and health. But, now, I have identified a natural 'remedy' - warning system. This is manifested in joint pains; usually experienced in the mornings. these days, the moment I experience these symptoms, I will review my activities immediately and reduce them. I try to manage my time in such a way that activities are evenly distributed; and that I will have ample time in between to rest. They key word of advice here is 'moderate' - moderate amount of work, rest and sleep.
1. Physical pain - emotional support
This is, first and foremost, the greatest problem faced by all patients. When I first developed joint pains in 1992, it was so unbearable that suicidal thoughts came into my mind. Although there were painkillers, they do not alleviate the pain instantly. It was at crucial moment, when coping with SLE became a concerted effort.
Yes! My whole family joined in the fight against relieving the pain! My family's constant care and concern gave me the fighting spirit because I cannot disappoint my loved ones. Hence, their emotional support actually boosted my threshold of pain, I was compensated by the love and family warmth that surrounded me. The members of the Lupus Association of Singapore played a major role in education my parents and I about SLE. It was a great support group, especially its therapy sessions where you find that you are not alone in this agony. I was so inspired by other patients', experiences and became more optimistic than ever!
2. Facial changes - media of publicity
The most unpleasant side-effect of taking high dosages of prednisolone is the swelling of the face, commonly referred to as 'moon-face'. This is especially devastating for young adults since this is the time of our life in which we are most self-conscious of our image. I survived this traumatic period my reminding myself that this is only temporary; that my face will return to its normal shape once I am off prednisolone. This then encourages me to persevere and to continue to look after myself well so as to reduce the dosage. At the same time \, I decided to make use of my 'moon-face' to raise an awareness of this little known disease. This was in response to curious remarks made by relatives and friends. I would patiently explain to them the symptoms of SLE and the side effects of the drugs taken. Hence, I was glad that my face had not 'ballooned' in vain.
3. Educational disruption - health, a priority
Indeed, this was a major disruption to my life, ambition and supposedly path-out career. Due to SLE, I had to give up the chance of pursuing my first love-fine art studies. Instead, I had to content myself to getting an ordinary Economics degree locally. Of course, this was terribly frustrating and I went through several depressions. Luckily, my parents were always there to put my thoughts straight again; reminding me to take my time to study and to pursue fine art as a hobby instead. Hence, with SLE, changes had to be made whether I like it or not, priority is now given to health and not ambition.
4. Employment problems - discrimination ?
Disadvantages : i) SLE affected; my studies, my grades and indirectly, my employment opportunity, ii)SLE itself. My 'policy' : reveal rather than hide educate the HR managers during job interviews.
5. Spiritual guidance
My religious belief in love, joy and peace has helped me to live each day to the fullest. It has also guided me my direction in life. I have learnt to cherish this precious gift of life. Indeed, my strong faith has also given me the hope that one day, a cure for SLE will be found as anything is possible with God, but only in his time.
Disclaimer :
The Lupus Group of W.A. (Inc.) does not recommend or endorse any products, drugs, treatments, procedures, medical or health professional in this article. We suggest you discuss this information with your doctor or specialist.