Coping With Sle/Lupus - At Work

World Lupus Day was on 10th May. Wish i could go to KL and see the event. Perhaps another time. In this blog i just want to share my experience how do i cope with SLE or Lupus at work. It does affect my work. Anyway, never know if somebody who read this could learn something from it.

First, especially in the morning, joint pain, aching and fatigue are common with people who suffer from this disease. So i tend to be absence like i take sick leave or a leave from the office. Frequently. In one week i work only 2-3 days. It run for about 6 months. Hehehe. But sadly it cut my salary. Anyway, i don't have any urgent job to submit. Quite bored sometimes. By mouth i told my boss that i'm sick and have to be on steroid. At that time he given me an expression like 'are you really that sick coz you look fine'. He might think that the disease is nothing serious and only take for a while. I told him to look up in the internet further detail about the disease. At first out of all people i knew only 2 persons know about the disease. Well, me too dont know much at first. From the forum about sle and doctor organized by HUS Sarawak there were many brochures and i took a few for different languages. My sister gave one to our boss and some other staff. My sister work at the same office. Lesson 1:make an awareness for people around you so that people will understand.

Before the forum, my sister urge me to be on high spirit to fight the feeling of sickness. Ermm......i don't listen. Sometimes i wonder how strong my counsin is when she was on chemo for breast cancer and still go to the office. Of course she couldn't concentrate on her work during the healing period. Because of the frequent leaves, in January, my sister bla bla bla wanted me to come to the office and she would drive the car. Unfortunately on that day i was disable. My husband helped to shower me. My sister had to hold me up to walk up / down the stairs. Terrible. Lastly, i decided to take sick leave. Lesson 2: Listen to your body not other people or what other people think.

Again many sick leave. So my boss told my sister he wants a letter from the doctor saying that i'm always sick. At that time i have a copy of transferring letter from private hospital to government hospital. I wrote a letter to my boss negotiate about working hour. Normally, we start at 8 am - 5pm. So i request my working hour to be 8.30 am - 5.30am or other. Anyway, i'm the one who close the office. After one week, during lunch hour, he willing to talk. But at that time i was stable due to higher dose of medication given by doctor. Less fatigue and less joint pain. So i told him i'm now ok coz of that dose. So both of us forget about that matter. I can still continue about that matter but i decide not to. Lesson 3: write a letter to the employer and try to negotiate. If still can't think of other flexible job.