Deciding when to tell people about my hemophillia
There's no one-size-fits-all formula, and I'm still figuring it out
Written by |
I once arrived late to an event and offered no explanation. I’d been standing at my door, ready to go, when I realized I needed to infuse factor VIII before I could proceed safely.
Because I have hemophilia, I infuse factor every 48 hours to prevent bleeding. I use additional doses before a more risky activity that could cause a bleed.
On that particular occasion, I was on my way 20 minutes later, hoping that no one would notice. When I arrive late to things, I don’t necessarily want to announce to everyone that I had to take time to inject factor into my vein first.
I think this might be what invisible disability looks like from the outside. Some people who know me have no idea what is happening beneath the surface. We often can’t see what others are carrying, and they can’t see what we are coping with. My grown kids often say I miss things that are right in front of my face. I think many of us do.
I share this story because I know what it is to have challenges that no one sees. Living with hemophilia means navigating a constant debate about what to share and when. It’s natural to worry about how people will react when they learn I have hemophilia. Will they be scared? Will they try to “protect” me when I don’t want them to? How can I ensure that I’ll be treated like everyone else?
I’ve learned that sharing a particular struggle with friends or colleagues can change things. When I disclose what I am carrying, sometimes people who care about me change the way they interact with me. This brings a compassion they didn’t know to offer before. Invisible challenges stay invisible until someone decides to make them visible.
To disclose or not to disclose?
Should I disclose my hemophilia so that people can offer compassion? Sometimes my hemophilia is obvious and screaming for people to see it. When I have an active bleed wrapped in a huge bandage, I am usually limping or using a mobility device like crutches. Yet the day-to-day effects of hemophilia tend to be more subtle. There are days when I am in considerable pain that is unseeable.
Some days, my eyes will barely stay open, and I’ll struggle with a nap jerk, also known as a hypnic jerk, while trying to get some work done. I may be fatigued from a long night of pain, or it may be due to iron issues. I’ve missed multiple gatherings recently because I needed to catch up on sleep. People might think I’m choosing to stay home, which can be frustrating. It truly isn’t a choice. I always prefer to be active and engaged, and to show up. But I wonder, will others see my mention of hemophilia as an explanation or an excuse?
Living with a partly visible disability is both freeing and limiting at the same time. Ultimately, I feel fortunate when I can hide my diagnosis and reveal it when I choose. Not everyone has that luxury. I continue having an internal debate and conversations with friends with bleeding disorders about sharing personal medical information.
To be fully transparent, I am still figuring this out. Every situation has a different set of rules to be navigated. One thing I’ve learned is that once health information is “out there,” you can’t take it back. I think it’s important to understand the potential positive and negative implications of revealing a hemophilia diagnosis and then decide accordingly. I personally err on the side of waiting to share if I have even the slightest doubt, but everyone is different.
As I ponder the timing of disclosure, I find myself more sensitive to others. We truly never know what is beyond the surface. So many people are fighting battles we can’t see or understand. Giving them grace and assuming positive intent can go a long way. We don’t necessarily need to ask for more details or explanations. When people extend this type of grace toward me, it’s both a relief and a gift.
People in my life have shared things they’d been struggling with for a long time, and I’ve been struck by how much I’ve missed. It reminded me that disclosure, when someone is ready, can open a door. It can create an opportunity for people to offer support in new ways.
If you have a bleeding disorder, do you hesitate to tell people about it? What helps you decide when to reveal your diagnosis? Please share your thoughts in the comments below.
Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
Leave a comment
Fill in the required fields to post. Your email address will not be published.