My family often tells me that they had to go through a roller coaster ride before they discovered what was affecting my health. I saw many doctors, including rheumatologists and neurologists, but to no avail. After years of searching, we were finally referred to a seasoned haematologist who diagnosed me at the age of 3 with Haemophilia B (severe).
As a kid, I was quite ignorant to the fact that I had haemophilia. Without me knowing, I had changed my family’s lives, financially as well as emotionally. I was referred to as the “golden child” as I was always sheltered from harm’s way. Eventually over time, I had to face the truth and accept my condition, and come to terms that my life would be different.
I often had to absent myself from school and it was difficult to catch up on schoolwork. Additionally, it was hard fitting in because I had physical limitations. Due to a complication with haemophilia later on, I was diagnosed with complex partial seizures – a form of epilepsy.
In managing haemophilia, I have to undergo blood transfusions to make up for a missing factor in my blood, which helps it to clot. In case of a bleed, I have learnt to use the P.R.I.C.E method: Prevention, Rest, Ice, Compression and Elevation. For me, prevention is most important. To reduce the chances of having a bleed, I follow a strict weightlifting regime and swim as regularly as possible to stay fit.
Having gone through hospital confinements that lasted for months has shaped me into a more open, introspective and reflective person. Meeting new people during my stay helped me become more open and willing to share about my condition. Moreover, bonding sessions with loved ones and friends allowed me to slowly learn to accept myself as much as they accept me.
I recently resigned from my first job due to complications with epilepsy. On the bright side, this change has opened me up to a world of possibilities that have allowed me to explore my passions again and improve my overall wellbeing. Some of these passions include playing the piano, swimming, cooking and weightlifting. I have also used this time to connect with friends and loved ones who are willing to lend their support and listening ear, or join me as a workout buddy. Occasionally, I suffer from an internal bleed that would disrupt my lifestyle and leave me confined to my bed. I try to stay positive and consider it rest, or a reminder that I need to adjust my lifestyle even more.
For caregivers and loved ones, it is important to guide, support and understand the patient, especially if they are young and still processing their condition. For patients who have yet to accept their condition, just know that everything takes time, and the only thing stopping us from goodness is ourselves. We are all pilgrims each with our own journeys, and we will never know what lies ahead of us. However, we should not give up on the hope of the destination, that which is truly good, and that which is a blessing.