People’s reactions make me shy away from discussing Gaucher disease

Most people would never notice anything different about me until they saw the Band-Aid on my hand. It leaves the door open to questions I do not, and often cannot, answer. These questions can leave me feeling exposed before I even have a chance to introduce myself.

This is often odd, because to me the Band-Aid represents something bigger than what the world sees. It represents my resilience and how I’ve made it to another week in a life that should’ve been cut short, and probably would’ve been if not for enzyme replacement therapy (ERT).

To me, it’s a reminder of how resilient I am and everything I’ve overcome. What I see when I look at that Band-Aid is every version of me that woke up already exhausted. I think about the little girl who sat in front of the TV for hours watching her favorite sports team while receiving an infusion and eating her favorite olives. But that isn’t what the world sees when they see the Band-Aid on my hand.

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Louder than words

There is a strange dichotomy that comes with living with a rare disease and requiring treatment. I wanted the infusion. In fact, I looked forward to it, because it gave me energy I often wouldn’t have otherwise. At the same time, I prayed that I’d never need it again.

Having to explain basic biology, let alone a rare disease, to someone has never been easy. When I was young, I didn’t understand the gravity of it. I couldn’t fully explain it. As a result, someone much older than me would often explain it to me. This left me in a strange limbo: I felt fine, but their behavior toward me signaled that they thought I wasn’t.

To this day, I still don’t tell people that I receive intravenous infusions. The Band-Aid often feels like a giant neon sign pointing at me, announcing to everyone that something about me is different.

Trying to explain what is happening to me is mentally taxing. There are days when I barely have the energy to manage my own emotions, let alone someone else’s.

One of the worst parts of living with a rare disease is attempting to explain the unknowns to people. It is as if a sudden jolt of reality hits them the second I explain what Gaucher disease is and their faces say something louder than words ever could.

I’ve seen it many times: Their eyes morph from curiosity to pity to terror, as if they’re thinking to themselves, “This girl is fragile, let me back up.” It’s like I’m suggesting that if they breathe too hard or sneeze, my bones will break. What typically follows is an immediate disengagement.

What makes these conversations so difficult is not the actual questions. I’ve found that most people mean well and are simply attempting to understand. What’s hard is the sudden realization on their faces when I can tell their perception of me has changed. Suddenly, I’m no longer just Victoria. I’m the girl with the rare disease.

I find myself having to explain something I never chose for myself while reassuring someone else that I’m OK. Often, I leave the conversation feeling mentally drained, not because of the questions themselves, but because I feel responsible for managing someone else’s reactions.

It’s the age-old dilemma: Do I try to explain why I need ERT, or just let it go? How do you explain something that you never chose for yourself? I’m still trying to figure that one out.

What I’ve learned is that no matter where I am or who I am with, most people who ask why I’m wearing a Band-Aid aren’t asking because they want to know. Curiosity simply got the better of them.

I may never know what it feels like not to have to get an infusion, to be lucky enough to be cured, and to no longer need to walk around with a Band-Aid on my hand. But if I do get cured, I hope someone will look at my scars and ask about them. I will tell them how I survived, and that will be my reward.

Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.

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