When women with bleeding disorders show up for each other
We've learned about our bodies because we had to
When fellow columnist G Shellye Horowitz asked me to travel to Houston to support her through surgery for superior mesenteric artery syndrome, I didn’t hesitate. I knew I needed to be there.
She told me I was the perfect choice because I understand hemophilia, its treatment, and patient advocacy. I was deeply honored. However, the truth is that I was the perfect choice for another reason entirely.
My abdominal résumé includes four surgeries and more small bowel obstructions than I care to count. This history has taught me what it means to consent to surgery while quietly calculating risk: the anxiety that creeps in before anesthesia, the disorientation of waking up afterward, and the careful wait to see how your body will respond this time.
I’ve also experienced complications most patients are warned about in theory but never expect to live through: pulmonary embolisms, nasogastric tubes, oxygen support, total parenteral nutrition, hematomas and seromas, hernias, surgical drains, sepsis, and a wound vac. I’ve learned, sometimes the hard way, that surgery doesn’t end when the incision is closed. Recovery can be unpredictable, especially for those of us whose bodies don’t follow the usual rules.
Those experiences shaped how I showed up for Shellye — not as someone who needed explanations, but as someone fluent in the unspoken language of postoperative care: vomiting that signals more than discomfort, pain patterns that shift in telling ways, the critical importance of postoperative walking, and why diet progression can’t be rushed. I recognize when it’s time to ask questions that don’t always make clinicians comfortable.
For women with bleeding disorders, that kind of vigilance isn’t optional. It’s survival.
Beyond the chart
Women with hemophilia are often described as rare, mild, or complicated. What we actually are is experienced. Many of us have spent a lifetime navigating medical systems that weren’t designed with us in mind. We’ve learned about our bodies because we had to. We’ve tracked symptoms, questioned assumptions, and learned to advocate even when doing so gets us labeled as “difficult.”
That lived experience doesn’t show up neatly in a chart. It isn’t captured in a single lab value. But it matters — especially during surgery, when decisions are made quickly, and consequences can last far longer than the hospital stay.
Being with Shellye in Houston reminded me that advocacy doesn’t always look like public speaking, policy work, or awareness campaigns. Sometimes it looks like sitting at a friend’s bedside, paying close attention, and making sure concerns aren’t brushed aside.
It also reminded me how powerful it is when women with bleeding disorders support one another. There’s a level of understanding that doesn’t require explanation — a shared knowledge of risk, resilience, and what it takes to get through complex medical situations intact.
Shellye’s strength as an advocate is well known. What many people don’t see is how much trust it takes to let someone else step in during moments of vulnerability. I was honored to be there, not because I had the right credentials, but because I understood what was at stake.
Sometimes, being the right person simply means saying yes without hesitation, because you’ve been there before and know exactly how much it matters.
I’m back home now. Shellye and her daughter are in Houston for the remainder of her recovery, which so far has been mostly uneventful. My role has shifted, but my support has not.
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.
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