When I was 20 years old, I was woken up by a sharp pain radiating down my entire left leg. The next morning, I could not move my left foot. I was sent to A&E, and was diagnosed with vasculitis, a rare autoimmune disease that involves inflammation of the blood vessels. My life changed with that diagnosis. I was told that there is no cure, and that I will probably be on lifelong medications.
In the first few years, the symptoms were considered mild, where I had red spots on both my legs during flares. This occurred whenever I stood or walked for a longer period of time. However, not long after, ulcers started occurring on both of my feet during flares. This resulted in hospitalization, and at least a month or two being home bound. They were extremely painful, and sometimes I could not sleep, even with painkillers. The nerve pain is excruciating.
The lifelong prednisolone (steroids) that I was on had caused early osteoporosis. This diagnosis only struck me when I suffered a hip bone fracture during a freak accident while traveling in Japan. I went through an emergency surgery overseas and learned how to walk again in a foreign hospital. Now I’m on low dosage oral chemotherapy drugs which has induced early menopause. I cannot stand and walk for long distances, as this will lead to inflammation, and then the painful ulcers. Sometimes I’m afraid to get judged when I sit on the ‘Reserved’ seat on the MRT due to the fact that I look young and relatively healthy.
This is a devastating disease that extremely few people know about. Its invisibility has caused much frustration, limitations and at the same time, has also brought out the best in me. I have learned not to take life for granted, and live life purposefully and meaningfully. My disease has taught me to take calculated risks and go beyond my comfort zone. I am also heavily involved in volunteering work and formed my own ground up volunteering group, Be Kind SG, to increase volunteerism and reach out to vulnerable communities that people do not have much understanding of.
Do you know that there are more than 100 different kinds of autoimmune diseases? Some may have milder symptoms, but there are many that have serious effects on the body. It sometimes takes years to have a proper diagnosis, which leads to treatment. And even then, it is a long and tough journey ahead for the person. The journey is sometimes very lonely, as its invisibility leads to people, sometimes even loved ones, not understanding how the disease affects the person physically and emotionally.
I have formed a closed and only support group in Singapore for people suffering from the different autoimmune diseases. It is my greatest wish that more people know of these diseases and to be supportive if you know someone with such a disease.