My hemophilia management involves rituals and chocolate

Several members of my family are diehard Purdue University basketball fans. This year was particularly exciting for them due to Purdue’s performance in the recent NCAA basketball tournament. During a gathering at their house on Easter Sunday, which included watching an important March Madness game, I gained insight into the significance of rituals in their game-watching experience.

For instance, my aunt prefers not to watch the game directly. Instead, she nervously paces while constantly checking the score on her phone. Meanwhile, my uncle insists on silence in the room during the game, allowing others to join him only if they comply with this rule. Additionally, everyone adheres to a strict dress code for each game that consists of a Purdue-emblazoned T-shirt for every game. They change into a different shirt only in the event of a loss to maintain a sense of consistency and luck.

The passion my family members have for Purdue basketball illuminates the power of rituals in enhancing their game-watching experience. This insight resonates with me as I reflect on the role of rituals in managing my own hemophilia and von Willebrand disease.

Living with a bleeding disorder requires strict adherence to treatment protocols to improve the body’s blood-clotting abilities. This includes the administration of costly clotting factor concentrates via infusions.

For me, these infusions are necessary after injuries or before and after medical or dental procedures. Administering the medication involves injecting it into a vein, a skill I’ve been trained to perform independently at home.

My infusion ritual

For me, the anticipation of each infusion triggers anxiety, due to the cost of the medication and the need for precise administration. To ease this apprehension, I’ve developed a ritual. It begins with a hot shower, followed by the use of an infusion mat adorned with horse pictures — a seemingly arbitrary choice that brings me comfort. Despite being right-handed, I inexplicably start by attempting to infuse my right hand first, holding the needle with my left hand.

During an infusion, I watch a YouTube video of someone self-administering clotting factor, which instills confidence in me and serves as a guide. Knowing that others share similar experiences helps alleviate feelings of isolation and abnormality.

While some people may choose to involve family members in their infusion rituals, I find solace in solitude. The presence of others tends to heighten my nervousness.

Once the infusion is complete, chocolate plays an important role in my post-treatment routine.

I’ve also established a separate ritual for trips to my hemophilia treatment center in Tampa, Florida. These excursions, which involve a stressful two-hour drive each way, include my ritual of indulging in activities not readily available at home, such as a shopping spree at Ikea or visiting a museum or art gallery.

In essence, these rituals are comforting and help me navigate the challenges of living with a chronic bleeding disorder.

Do you have a bleeding disorder ritual? I’d love to hear about it in the comments below.