Amelia Chen, 39, was diagnosed with Behcet's Disease in 2020. She shares how the condition has impacted her daily life, particularly in relation to her interpersonal relationships. Behcet's Disease has affected her ability to communicate and posed challenges in disclosing her diagnosis to loved ones.
Living with Behcet's Disease has brought about a unique set of challenges, particularly in my relationships with others. Despite my daily struggles with oral ulcers and painful body lesions, I have found that the social aspect of my life has been impacted the most.
One of the biggest challenges I have faced is sharing my diagnosis with others. It's not just a matter of informing people about my condition but also dealing with their reactions. I have not been able to bring myself to tell my parents about the diagnosis, because I fear their criticism and lack of understanding of what an autoimmune disease is. When I was misdiagnosed with tonsillitis, they were defensive and did not believe it was anything more serious. Only my husband and close friends know that I live with this condition.
On a daily basis, I have to force myself to work and communicate as "properly" as possible, despite the fatigue and pain, especially on flare days that happen during my ovulation period. One of my previous supervisors even asked me if I ate something hot to have scalded myself, not realizing that it was a symptom of my condition. Some people even assume that the ulcers are due to poor oral hygiene.
My decision-making has been impacted by Behcet's Disease. I put much-needed socialisation on hold and don't commit to any gatherings or events. I also dress up to hide the body lesions. Dealing with these challenges has not been easy, but the "hiding" strategy has been effective so far.
Living with Behcet's Disease has made me feel that autoimmune diseases are akin to a cancer diagnosis. It is something that will plague me for the rest of my life, with more symptoms that could pop up and affect my life and lifestyle in ways I never imagined.
Fortunately, I am not alone in this battle. My husband has been my rock, providing unwavering support and understanding. I also had a close friend with an autoimmune disease who comforted me during the initial phase when I was diagnosed. Sadly, she passed away due to complications of COVID-19 last year.
What I have learned from living with an autoimmune condition is that it can be as debilitating as any other condition. It has taught me to be patient and understanding, not only with myself but also with those around me who may not fully understand what I'm going through. It has also taught me to cherish the people in my life who support and stand by me, through thick and thin.