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My Story

Looking And Feeling Good In Spite Of Lupus  
by Irene Lim, President, Lupus Association (Singapore) HGM 2013 / 21st ICG
Year 2000 was a watershed year for me.  I was diagnosed with SLE that year. Ironically, I started the year resolving to work harder and to earn more money.  Unfortunately, increased workload translated into increased stress.  I began to suffer severe migraines almost daily

My Story - Looking And Feeling Good In Spite Of Lupus

by Ms Irene Lim, President, Lupus Association (Singapore)

Year 2000 was a watershed year for me.  I was diagnosed with SLE that year. Ironically, I started the year resolving to work harder and to earn more money.  Unfortunately, increased workload translated into increased stress.  I began to suffer severe migraines almost daily.

Migraines were not new to me then.  I had had numerous episodes of migraine attacks since I was in my twenties.  They got worse after I gave birth to my children.  My husband worked long hours so I had to bear most of the parenting and child-caring duties.  What’s worse was that both my children had childhood asthma and were sick often.  Caring for them and working took its toll on me. Apart from persistent migraines, I often had chest tightness, breathlessness, prolonged coughs, joint pains, body aches and bad sleep.  The many symptoms worried me.   My eldest sister had lupus and she passed away from the complications of SLE in 1992.  However, my visits to GPs always invariably yielded the same diagnosis of anxiety and stress.  Even when they were told of my family history, the GPs did not test me for Lupus. I guess they might have been looking for the infamous ‘Butterfly Rash’ often found on the faces of Lupus patients.  I did not have any rashes on my face.  I was usually prescribed relaxants and sleeping pills.

One sleepless night in early December 2000, in the midst of a most intense and severe migraine (painkillers no longer provided the needed relief), it  suddenly dawned on me that if I didn’t have my health checked to find out what was causing the migraines, I might not be around to see my children grow up.  The very next day, I went to a doctor at a clinic near my house.  Blood and urine tests were done together with a CAT scan of my head.  The relief I felt when the CAT scan turned up nothing was short-lived. Two days later, I received a call from the doctor.  She recommended that I see a rheumatologist.  I knew instantly what that meant..I have Lupus. By then, the migraines were getting worse, I was getting weaker, my joints were hurting and my whole body ached.  After a battery of tests to confirm the condition, I was warded in the hospital and the rheumatologist started me on aggressive treatments immediately.  I was found to be leaking protein in my urine. A kidney biopsy showed that lupus had attacked my kidneys and they were in a severe condition.

Lupus or SLE, short for Systemic Lupus Erythematosus is an auto-immune disease that affects mainly women of child-bearing age.  In a normal person, the immune system protects the body.  However, in a Lupus patient, the immune system becomes over-active and attacks the body's own tissues and organs causing pain, inflammation and damage. Lupus is a chronic condition with no known cure. 75% of Lupus patients suffer kidney involvement with some patients requiring dialysis and some may even die if the disease is not well controlled.

The diagnosis felt like a ‘death sentence’ to me.  I was reminded of my late sister, the pains she suffered, the rapid pace in which her condition deteriorated through the years and how she finally succumbed to the disease.  Almost all her major organs were affected.  She had lasted and suffered 10 years after she was diagnosed.  It occurred to me then that my lupus condition had gone undiagnosed for many years.  I was terrified and feared that I had little time left.  Life began to feel too precious and the world became too beautiful to leave behind. I could not bear the thought of leaving my loved ones. I did not want to die young. Although the rheumatologist assured me that lupus treatments and medicines have improved and that lupus patients can lead quite normal lives and live normal life-spans (a significant improvement from a life-span of 5 years in the 1960s), I still sank into despair and became depressed.  Hormonal change due to the strong treatments could have exacerbated the depression as well.  However, when I saw how saddened and distressed my husband, children and other family members were by my condition, I was motivated to be strong for them.  By no means did I want to aggravate their pain further. I reminded myself daily to remain positive. Hence, my ‘grieving period’ was a short one.  The love, care and support from my family made me most determined to get well.

When I felt better after about half a year, I started exercising, swimming and doing yoga.  An important thing I did was to contact the Lupus Association (Singapore), a patient-led patient support group for Lupus sufferers. Through the association, I got to know many other patients. The support network that the volunteers at the association extended was tremendous.  In addition, the association hold regular talks on Lupus-related topics and prints newsletters & information booklets to update members on new medicines and latest treatments. It felt empowering being an 'educated' patient.  Through mingling with other sufferers of the same condition, I learnt to live with my illness.  Being in the association helped me in my recovery and, hence, I decided to serve as a volunteer in it to help others. Though Lupus Association (Singapore) is based solely on donations, it has a Medical Welfare Subsidy Scheme to help needy members who need the newer and more expensive treatments where conventional treatments fail to control the disease.  With greater awareness of the illness and the existence of the association, I hope more people/corporations will come forward to help the association further its work and goals.