Until a few years ago, Jenny wore black tights throughout the summer to avoid comments and speculation about bruising caused by her bleeding disorder.
Diagnosed with type 2M von Willebrand disorder, also known as von Willebrand disease (VWD) at birth, Jenny’s dad, older brother and auntie also have the condition so within the family their bruising and other complications were seen as normal.
But outside the home Jenny, 28, felt ashamed and embarrassed about her bruising and went to great lengths to cover it up. Even today, she avoids swimming on bad days and considered giving up cycling – an activity she really enjoys – because of the bruising it causes to her legs.
I can feel very exposed when I have lots of bruises and worry that they will raise a ‘red flag’ that I’m being assaulted or self-harming, when all I’m doing are normal activities that anyone my age does without thinking.Jenny
Her self-consciousness began at primary school, Jenny believes. She’d had some serious bruising, including two black eyes, after a few accidents when she was nine and 10, and remembers a fellow pupil announcing one lunchtime: ‘My mummy says she’s getting beaten up’.
Jenny said: “That comment always stayed with me. My parents were a lot more upset than I was, but it did make me aware that people were speculating about me and there was a level of stigma.”
In her early 20s Jenny reached a turning point and decided not to let her bleeding disorder dictate how she lived. She said: “I didn’t want to be embarrassed any more. I tried to own it, I just wear what I want to wear as much as I can now.”
Another important step was being part of a psychological support trial, which unfortunately was discontinued. Jenny said it helped her unpick her feelings of shame, many of which stem from her childhood. She said: “I started to feel a lot more confident and realised I didn’t have to feel rubbish about my bleeding disorder. Having a bleeding disorder goes deeper than just physical symptoms and I think everyone would benefit from being able to talk about the psychological impact it has on their lives.”
Jenny is treated at a haemophilia centre in London and uses tranexamic acid preventatively and, for more serious bleeds, will receive factor treatment. She receives semi-regular iron infusions to help with her anaemia which is also caused by her VWD.
Jenny, who works as a researcher in the Westminster parliament, is keen to raise the profile of bleeding disorders and to see more people diagnosed. She said: “No one should be scared of getting themselves checked out – it can only be positive. You’ll get clarity and, if you do have a bleeding disorder, you’ll get the treatment you need to improve your life.”
The Haemophilia Society (THS) has developed a symptom checker aimed at women and girls with heavy periods who may have an undiagnosed bleeding disorder. Encourage your female friends to try the symptom checker today. Find out more about THS’s Talking Red campaign which raises awareness about women’s bleeding disorders.