Ankylosing Spondylitis and Decision Making: Navigating Life's Challenges with a Chronic Illness
Olivia Yeo, 25, diagnosed with Ankylosing Spondylitis in 2021, shares her experiences with the autoimmune condition. It has affected decisions in her career, social life, and family planning. She has had to change her career to accommodate her condition and cannot walk long distances or carry heavy objects. She has learned to make decisions based on her health and manage the impact on others. Olivia is grateful for the support of her loved ones but still feels inferior and limited by her condition.
I wake up every day with my condition, Ankylosing Spondylitis (AS), on my mind. It is now 2023 and I was diagnosed only a couple of years ago at the age of 24. The stiffness and sharp pain in my lower back and buttocks were my main symptoms, along with random flare-ups in joints such as my wrist and MTP joint in my feet. The fatigue that accompanied my condition was also a constant battle.
Living with an autoimmune condition made me feel inferior and less deserving. I worried that people would think I was "mafan," or troublesome. I admired people who had no health conditions and could work, go to the gym, meet friends, or go shopping after work. I had to ration the 24 hours I had to manage my limited energy levels, reducing a lot of "living" time, such as meetups and hobbies, to get more "rest" time in bed or on the sofa. I would sleep on the sofa for up to 13 hours right after getting back from school or work.
AS brought many challenges to my life. Going out for walks and shopping was a challenge. I couldn't walk extensively, which meant even a normal window shopping trip around the mall became an obstacle course that healthy people enjoyed but that I found daunting. I have to take frequent breaks and find seats to cool my flared-up joints. Sleeping was also a struggle, especially when the pain in my sacroiliac joint was at its worst.
Simple tasks like helping my mother carry a queen-sized mattress have become impossible, and I had to call my elder siblings for help instead.
I had to change my career from civil engineering to something that allowed more movement, and I now work as a quantity surveyor on a construction site instead of a typical role like a site engineer that required extensive labour.
The period after my diagnosis was also challenging for my boyfriend, who worried about how my condition might affect him in the future. He almost wanted to break up, but eventually, he stayed with me through many episodes of flare-ups and sickness.
Due to the highly inheritable nature of my health conditions, I decided not to bear any biological children. Instead, my boyfriend and I discussed the possibility of fostering or adopting a child.
AS changed the way I made decisions. I had to find a workplace nearer to my house to reduce my commuting time. Otherwise, I would have to spend my commuting time standing up in buses and trains for long periods, which could trigger sharp pain in my inflamed joints.
I have been forced to adapt my life to cope with AS. I could no longer sit for too long, and my 8-hour desk job pushed me to do yoga and stretches during work hours. Without these exercises, the looming pain and stiffness would consume my energy and destroy my mood when I got home.
Being immunocompromised, I remind my friends and family consistently that I couldn't eat barbecue, moo kata, hotpot, or raw food. I sometimes feel like a burden to other people, and it was challenging to reduce the variety of food when choosing a restaurant.
Sometimes I choose to keep quiet and take the risk of getting on the bandwagon and going along with my friends or family, to the detriment of my health. But I am learning to speak up more and remind them of my condition.
Living with AS has been a challenging journey, but I have found ways to deal with these challenges and learned not to take good health for granted. It showed me that I do have support from people around me. I am grateful for my support network - my boyfriend, family, university friends and professors, and the company that employed me even after I declared my health conditions and requested accommodation.