My name is Lidia Grande-Ruiz, I am 24 years old and I have moderate von Willebrand Disease Type 2M. I was diagnosed a month before my high school graduation, but I began to show symptoms in middle school. I was bleeding a lot, going through four pads every hour, so right away my mom made an appointment with my doctor. She told us that it was “perfectly normal, most girls experience that and it will go away on its own.” I also have Epilepsy and had dealt with many doctors telling me it was “nothing” before being diagnosed, so I was skeptical. But as the years went by, the heavy bleeding subsided and it seemed like she had been right. Unfortunately, peace does not last forever. In the final months of my junior year, I did not have my period for four months. When I got it, it was as bad as it had been in middle school along with the side effects of feeling tired, bruising easily, and loss of appetite. After blood transfusions, hospitalizations, numerous doctors appointments and blood tests, I was finally diagnosed with vWD in May 2012.
Being diagnosed was such a huge relief, but fear was at the back of my mind. From the beginning, I was always paranoid about what guy would like me with my condition and not see me as someone fragile who could bleed to death from a paper cut. My mom understood where I was coming from, and she told me that the right guy would understand and still care for me but at the same time let me be independent. I hoped she was right!
When I told my first boyfriend about it, he was curious. He had never heard of vWD and always saw me wearing my Medical ID bracelet. I informed him all about my bleeding disorder and debunked the myths surrounding vWD. I told him that there are days where I want to stay in bed because my joint pains get bad and at first he understood. But as time went by things got difficult. He would treat me like a “regular person,” which I appreciated but at the same time it got annoying because he would forget I have a bleeding disorder. I got tired of telling him over and over again that I am just tired and that it does not mean anything personal. Eventually we broke up because it was stressful and we both had a busy schedule.
When I told my current boyfriend about my bleeding disorder, he told me that he appreciates me opening up to him and that he still sees me as a strong woman. When I get joint pains so bad that I cannot get out of bed, he brings ice packs and massages my joints. I have always been ashamed to ask for help for anything or even take a rest day when my joint pain is unbearable, but being with my boyfriend I have learned to listen to my body more and ask for help. He has opened my eyes to the fact that we should never be ashamed to ask for what we need.
In unexpected ways, having von Willebrand has been the best thing that has happened to me. It has helped me find true friends who understand and look out for me. It has also allowed me to find a partner who is beyond amazing and has crumbled my fear of being rejected because of my bleeding disorder. My boyfriend is my best friend and I am beyond blessed to have him and my amazing friends in my life. I am currently working towards my Associate Degree in Film Production at Santa Monica College. I hope to one day use my major to shed light on bleeding disorders and become a advocate for this incredible community.