Patients' Perspective

In 1981, when I was in my teens, I was very athletic, more active than most boys in my class. I played every kind of game. One day, during the Christmas holiday, I had a very badly sprained ankle and dislocation of a hip and I went to see a doctor. The doctor bandaged the injured leg but he didn’t seemed to make a big deal out of it and neither did I.

My condition got from bad to worse. My joints ached and lumps started to appear on my joints and I lost most of my energy. My neck began to be painful and at first I thought it was the position I slept in. The pain spread to my shoulders. The pain in my jaw became so intense that I was unable to chew, I could only tolerate drinking soup and beverages. My appetite had decreased and I lost about 5 kgs. By the time I saw the doctor I had new pain in one knee and the opposite hip. There were days when I noticed my wrists and hands becoming so stiff and painful and I had trouble using them. I had this bad experience every day, the affected joints will be red, swollen, hot, painful and very stiff usually in the morning, and gradually feeling much better during the day.

For several months, I didn’t talk to any one about my illness. The hopefulness and excitement for the future had gone out of me. I just could not concentrate on my studies anymore. I could not cope alone. I was feeling very sick, in a lot of pain and very depressed. I didn’t like my family and friends to see what I was going through, so I made an effort to pretend that everything was find but that didn’t fool anyone. I was obviously in terrible shape.

Even after I was diagnosed to have rheumatoid arthritis I didn’t quite believe the doctor because I thought arthritis affected only on the elderly. The doctor showed no concern and told me I would have to learn to live with the disease. He told me that he couldn’t hold out any hope for me for the future. He resented the questions I asked for information about the disease. Soon I felt betrayed and dislike visiting the clinic. Later, instead of getting any better I ended up bedridden for more than 2 years. I really didn’t care. My dad was usually the one making the decisions and all he got from me was tears. I didn’t have any hope and was always thinking of suicide. My mum was sympathetic and supportive. My dad was always seeking doctors and chinese physicians for advise and I had taken tons of medication and herbs. Delay in seeking the right teatment had worsened my condition.

Subsequently, for some reasons, I got better. The inflammation and pain just went away for a couple of years. But I was quite disabled. I was unable to walk or stand without the help of the walking stick for years. My joints were deformed and my mobility was restricted. I was walking with a terrible limp. Slowly I was physically and mentally prepared to face the surrounding. I was unable to squat or lift my legs more than 6 inches above the ground. Without my mum’s help I was unable to do simple daily routines like dressing, bathing, eating, getting into and out of a chair and bed. Slowly I realised that with an extended stick and assisted apparatus I would do a lot of things on my own. I had to get a seat cushion to increase its height and bought another mattress to raise the bed. As for bathing, the washroom was install with railings and a high chair ready for my use.

The disease went into remission until late 1994 I could feel this time the pains was more severe on my hip joints. There were some deformities and restriction in movement. I was tired easily and unable to walk more than an hour or two. Eventually, in early 1995 I was referred to Tan Tock Seng Hospital for treatment. I was told my disease had not been well controlled and both my hip joints were severely eroded. Then my doctor suggested I considered a total hip replacement surgery and referred me to an orthopaedic surgeon for further examination. I regret neglecting my rheumatoid arthritis far too long. I was very shocked and fearful that the disease will limit my life and dependent on others again. I was very scared of going through the operation not only once but twice within a year, a new situation in which I had limited knowledge. A joint replacement provides an increase range of movements without pain and may last about 15 years or so I was told.

Finally my right hip was operated in early April 1996 and was discharged after 9 days stay in hospital. Walking on clutches, careful not to put any body weight on the operated leg. After recuperating at home for 2 months I returned to work. My second operation on the left hip was operated a few months ago, now I using a walking stick to support my left leg whose hip and thigh muscles are very weak. Presently I am doing strengthening exercises daily. The two surgery it may bring relief but they do not cure my conditon.

I am here today, sharing my experience, enjoying life within my limitations and looking forward to what can be done rather than looking back. I am a more happy and active person. Sharing with others can be one of the best ways of learning how to cope and educate oneself. Now, I am voluntary helping in the Rheumatoid Arthritis Society (S) which was recently formed under the care of the Dept of Rheumatology & Immunology, Tan Tock Seng Hospital. This society is a non-profit voluntary support organisation for patients. Lastly I welcome each and everyone of you to join as member.

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