The Challenges of Dating as a Woman With Hemophilia

Originally published on Hemophilia News Today by BioNews, Inc.

I’ve been dating for nearly 40 years, and consider myself somewhat of an expert. Valentine’s Day feels like the perfect opportunity to impart my experience and wisdom. One thing is certain: Dating with hemophilia and von Willebrand disease is like a box of chocolates — you never know what experience you’ll get.

Aunt Flo

My monthly period, “Aunt Flo,” would appear at the worst times. If I was on a first date, Aunt Flo was sure to be there. I had no trackable cycle. I would bleed between periods, or periods would last 10 days.

As a result of the heavy bleeding, I was frequently anemic and often experienced cramps, pain, and fatigue. Treatments were limited at the time, but fortunately, women have better options today.

One example of Aunt Flo’s ruinous abilities: In my late 20s, I met a man I adored. We were great friends and had a wonderful time on our first date. Suddenly, my menstrual bleeding became a “Shark Week” event. I had to end the date early, without explanation. I’m sure he thought that meant I wasn’t into him, but that was far from the truth. Embarrassed, I couldn’t bring myself to explain to him what was happening. We remain good friends.

Tainted blood

Hemophilia was associated with AIDS during my prime dating years. My dates rarely made it to the boyfriend stage during that time. I was afraid of my HIV test coming back positive or unknowingly passing along a fatal disease to someone else. I still harbor this fear.

Imagine this as my Match profile in the 1990s: “I am a SWF with two potentially inheritable bleeding disorders. I may have HIV/AIDS and hepatitis from contaminated blood products and I can’t bear your child. In a bad year, I may need hundreds of thousands of dollars’ worth of clotting factors, which will involve needles. Let’s have lunch!”

What to reveal and when

I always had difficulty deciding if and when to disclose my bleeding disorders to boyfriends. I didn’t do it often. I would speak in vague terms, such as, “I am a bleeder.” The only exception was my full disclosure to a medical doctor whom I dated for over 10 years. Even today, only my closest friends and family know about my bleeding disorders.

Dating injuries

Besides the heavy menstrual bleeding, strange events would occur on dates. I would wake up to a pillowcase streaked with blood. Sometimes the blood came from my nose, and at least once it came from my ear.

There were times in my life when a touch with medium pressure, like a firm handshake, would cause bruising. More than one boyfriend would look at his handprints emblazoned in bruises on my body and worry people would think I was being abused.

A bleed in my breast once caused a rapidly growing angry lump, mimicking an aggressive form of breast cancer. The painful lump required emergency surgery. My boyfriend at the time felt terrible, thinking he’d caused it. The surgeon asked if I’d suffered a trauma to the area, but I hadn’t. It was a spontaneous bleed.

Good news

I’ve had several long-term relationships, but never married. Dating has been challenging for me, but I am happy.

Dating and relationships have gotten easier with age. I can’t have children, eliminating that tricky conversation. A uterine ablation ended Aunt Flo and my fertility when I was in my 30s. I tend to attract men who don’t have or never want children. It’s an interesting niche.

I know my body and limitations, and thankfully treatment has come a long way in the past few decades. The elimination of Aunt Flo significantly improved my quality of life.

As a newly single person, instead of showing gratitude to one person in my life this Valentine’s Day, I’m celebrating five young men who have made my life better: my nephews. I recently sent them each Girl Scout Cookies because there’s no better way to say “I love you” than with a box of Thin Mints. Unlike a box of chocolates, at least you know what’s inside.