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A day in the life of a vWD woman: Ria’s story

Written by Daniel Barnes, April 17, 2017

A day in the life of a vWD woman: Ria’s story

The theme of this year’s World Haemophilia Day is women and girls and to bring attention to all our female members with a bleeding disorder, we invite you to read Ria’s frank and funny account of life as a woman with von Willebrand Disease – far more real than anything you’ll find in a medical textbook! We’re sure some of you will be nodding along in agreement at having similar experiences, and we encourage you to add them in the comments below.

It occurred to me recently how in all the information leaflets, websites, and medical textbooks describing the signs and symptoms of bleeding disorders in women, it lists “menorrhagia” (heavy menstrual bleeding), “easy bruising” and “frequent mucosal/ nosebleeds”, but never once have I read a real, true account of what this actually means.

So here is one, straight from the horse’s mouth so to speak.

First up: periods. Read it and weep/grab a bucket –if you’re male always remember this when addressing your girlfriend/mother/sister/supermarket lady. They have to deal with this on some level on a regular basis and despite the invention of ice cream, Netflix, and painkillers, it still sucks.

A day in the life of a von Willebrand Disease (VWD) woman at this wonderful time, in my experience, can be likened to the prom scene in Carrie (and can bring around a similar level of disdain for the education system in teenage years). In reality, it’s setting your phone alarm every hour during the night to ensure you haven’t bled through and not being able to fall back to sleep due to the nauseating pain in your abdomen. It’s hoping to not have to explain your constant trips to the bathroom during lectures/work/social gatherings. It’s missing school days because of the times you bled out during the classroom and despite having a wonderful best friend who lent you her coat to cover up with, everybody noticing. People’s reception to these issues vary, some being heart-warmingly gracious, kind and dignified; others not so much (a couple of cruel teaching staff spring to mind).

Next: easy bruising. The kind that may lead to social services involvement, much to my poor mother’s despair, because as a child I had the coordination of an inebriated jellyfish (still do) and felt the need to be a part of any contact sport I knew I should not be. This lead to a regular substantial amount of bruising that passers-by could only assume were caused purposefully and felt the need to help. Worse, it can lead people to assume your romantic relationship is one which involves domestic abuse.

Frequent mucosal/nosebleeds: Wahey; one of my favourites. The classic nosebleed. The waking up with blood all over your face and wondering what the hell happened to your lipstick. The “one cocktail down” nosebleed; when you’re one drink in, beautiful shoes on, an adorable man in your line of vision and it just has to happen at that point (an acknowledgement to a dear friends’ tissue issues). Another untimely example of vWD creeping up to say hello are the times where you just want to enjoy an apple (yes this is partially a lie, it’s more likely to be some form of sweet) and life won’t even grant you this. One minor slip and you’re in for a gum/tongue/lip bleed which is likely to go on for a number of hours during which if you do attempt to smile you look like a member of the cast of The Vampire Diaries (unfortunately I am referring to the vampire bit, post devouring human blood, not the ridiculously attractive nature of the cast).

Throughout these trials of varying degrees, I’ve come to value the power of humour and the realisation that we are all in fact human. Yes, a predisposition to abnormal bleeding and bruising may be a drag, but personally in some ways this allows me to view life from a greater perspective. As I grow older I value the days in which I feel well to a greater extent, and in some ways this in itself is a gift.

This was just a brief insight into “a day in the life of a vWD woman”; the good, the bad and the downright embarrassing. I’m sure between us all, there are many more amusing anecdotes, insights, and lessons to be shared.

Ri

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The full version of Ria’s story will feature in the Summer edition of HQ magazine.

Meanwhile, if you’re a woman or girl with a bleeding disorder, what do you say when you encounter someone who doesn’t understand? And what are your tips for managing your bleeding disorder? We’d love to hear from you so add your voice in the comments below.