Living with the wolf

The inspiration to write this article came from ‘The patient's journey: systemic lupus erythematosus’.1 Many of us dealing with chronic diseases often forget the role of the patient as he/she struggles through periods of darkness and light, anger and depression, pain and exhilaration. With support of family, friends, employers and clinicians, living with the wolf is not all doom and gloom. I was diagnosed with a condition known as ‘systematic lupus erythematosus’ (SLE) 15 years ago. Lupus in Latin means wolf and the condition brings to mind the bites of this animal. A disease of a thousand faces, the symptoms are manifold. It can present itself in many different ways such as prolonged fever, joint pains, facial rash, excessive hair loss, mouth ulcers, low blood cell counts, kidney disease and neurological symptoms such as stroke, fits and psychosis. Every lupus patient has different symptoms that can range from mild to severe and may come and go over time. In medical terms, we classify periods of illness as ‘flare’ and period of wellness as ‘remission’. In hindsight, I suspect my lupus manifested itself way before the characteristic red skin rash – the so-called butterfly or malar rash that appears across the nose and cheeks. Because this sickness develops slowly and evolves gradually over time, it took almost a month after my return from holidaying in the Canadian Rockies that I was diagnosed with SLE. Like looking at a polaroid picture that is only a quarter or half developed, no doctor at the early stage of the disease was able to explain my persistent fever, not till I started accumulating enough evidence, such as painful and swollen joints, loss of hair, mouth ulcers and the classic butterfly rash that confirmed the diagnosis. Lupus a decade ago was still relatively unknown. I recalled upon diagnosis feeling afraid, mystified, helpless and threatened. As if adding insult to injury, it was misinterpreted as a form of AIDS (acquired immune deficiency syndrome). While in AIDS the immune system is under-active and deficient, lupus is the reverse, in which for unknown reasons, the immune system is hyperactive and attacks normal tissues. These attacks result in inflammation and bring about symptoms. In layman terms, one can think of the body's immune system as a security system which contains several different types of cells, some of which function like security guards and are constantly on patrol looking for foreign intruders. When they spot one, they take action to eliminate the intruders. But for some reason or other in lupus, the security guards lose their ability to tell the difference between a foreign intruder and a person's normal tissues and cells and so mistake them as foreign and start eliminating them. No two people with lupus are alike since the disease varies in intensity and degree from one individual to another. There are some who have mild disease, some moderate and some so severe that it is life-threatening, though most SLE patients can generally expect a normal lifespan. Unfortunately, I belong to the last category. Overwhelmed by samonella infection, I underwent heart surgery to resect an aneurysm of the right coronary artery in 1995. A relapse in 2005 crippled both my kidneys when I suddenly developed shortness of breath resulting from excessive fluids in the lungs. Due to the prolonged side-effects of steroid therapy, I had both hips joints replaced. Last on the list is glaucoma surgery on both eyes. If there is one impression that I have formed throughout the 15 years of living with the wolf, it is that this disease challenges my mental, physical, emotional and spiritual energies to the limit. I was only 22 in 1991 and at the prime of my life when I was diagnosed with SLE. After graduating from University and just having secured a job in a reputable company, I was like all my peers eager to experience the best and brightest qualities that life has to offer, when I was suddenly faced with the perplexities of this puzzling and devastating disease. Once in control of my life, I then found myself out of equilibrium. Taming a wolf entails tremendous sacrifices and patience. Accepting the cruel truth is the first step. No matter how ‘normal’ I want to feel, the fact is that I am no longer ‘normal’. I soon overcame the psychological stress associated with this chronic illness after learning that lupus patients can afterall still maintain a high quality of life. Recalling the Chinese strategist Sun Tzu, and his Art of War, who advocated the importance of knowing yourself and the enemy before going into the battlefield, the key to managing my illness is thus to understand the disease and its impact. Throughout my lupus years, I have never under-estimated the importance of effective stress management since stress alone can trigger an outbreak or a flare. Modifying home and work schedules and restructuring of priorities together with strict adherence to medication are vital strategies when fighting the menace of the wolf. However, having said the above, whenever my condition stabilized and was under control, the exhilarating thought of being ‘normal’ again will lead me to want to live a normal lifestyle and to gain back lost time. I would foolishly engage in many activities that I had previously put on hold despite repeated warnings from parents and friends which for most of the time, fell on deaf ears. I regret to admit to-date, I still have a lot to learn in caring for and loving myself, which when I do, it's always through the hard path. Despite my illness, I continue to work full time. Every day is different though. There are times I don't feel good but I still struggled on, maintain a good work ethic and fun-loving outlook. Like many others who have lupus, I learnt how to manage the changes caused by lupus to my own appearance. A positive outlook in still wanting to look my best despite feeling awful helps in rebuilding my self-esteem and confidence. The side-effect from high-dose steroid medication somehow caused ‘irreversible’ damage to my beauty and sex appeal. Tragic though it may seem, I was much consoled that my moon-shaped face and weight gain are only temporary. A picture of my old self thus became a source of inspiration and hope that one day, I will look my normal self again. My family has always been by my side throughout this rollercoaster ride. It has been difficult for my parents especially when I was the only child in the family. There is this sense of guilt that I have let them down, though it's no fault of mine. All recognition must be given to them for their time, love, effort and sacrifices. Close to my heart are long-remembered smiles and tears, hurt and hopes which we shared together when lupus took me to the extreme. Next on my list are my medical specialists – rheumatologist, cardiologist, cardiothoracic surgeon, infectious disease specialist, gastroenterologist, eye specialist, renal specialist, orthopaedic surgeon who meticulously administered to me over these years. The good doctor-patient relationship which I shared with these people is always appreciated and unforgotten. Since lupus can affect multiple organ systems, it is an expensive disease to manage as treatment requires the participation of many medical specialists, specialized tests and procedures, not forgetting expenses incurred in hospitalization during times of severe flare. I fully appreciate the understanding and financial support of my company. Also my superiors, colleagues and friends who do not discriminate me due to my illness and who have helped me through in times of poor health. I also want to pay tribute to the Singapore Lupus Association which through their network of patients, families, medical and nursing professionals, researchers and other private organizations have supported me in times of need. The association has done an excellent job to increase public awareness of the disease through public education, talks, exhibitions and printing of pamphlets. Finally and the most important of all, the Holy One above where everything got started in Him and finds its purpose in Him. My second lease of life is a blessing given by God. Though the wolf song of every SLE patient differs, our experiences and thoughts are similar. God gave me this for a purpose. I am ready to deal with it. I just hope that all lupus patients can instil this drive and determination in them to live life to the fullest. Strange as it may seem, lupus has changed my outlook on family and relationships. It has taught me the importance of living with a positive attitude. Every stage of my journey with the wolf is a self-discovery in itself. Though dreams may be shattered, all is not lost. Accept the present as temporary and move on with faith and hope that through patience and perseverance, gradual improvement in health is achievable. My lupus is now in remission. I am happy with what I am and have now – my family, dog, friends and I treasure every moment of life. For better or worse, I am now on dialysis due to kidney failure. Still optimistic, I do not know what lies ahead but this is another journey which the story is yet to unfold.

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