Be kind to yourself
Thu 21 Jun 2012
I was diagnosed with VWD when I was 16 years old. I went to get checked out after having almost two years of violently heavy, erratic and unpredictable periods. My mum had suffered the same from her teens. It was a relief to know why I lost so much blood (not to mention the frequent bruising, never ending cuts and scratches, nose bleeds etc), why I was so tired and felt unwell all the time. It was also comforting to be told that there were a range of treatment options for my symptoms.
At the time, only four other people knew; a friend, my mother, my brother and a teacher at school who we had been keeping up to date with all my absences and medical problems. My brother wasn’t too interested but my mum, friend and teacher were all supportive and helped me get through school with all of my absences and leave due to doctors’ appointments.
In hindsight, I wish I hadn’t been so hard on myself. It took a few years for it to finally click that I didn’t have normal periods, and that it was ok to ask for extensions at school, to take time off, and to take care of myself. I sometimes still have to say to myself “its ok, you need time to rest so your body can recover”. If I could talk to my 15 year old self, I’d let her know that asking for help is ok, and to trust what your body is telling you.
Now I’m a bit older, I’m looking forward to the future challenges of being a female with a bleeding disorder. I’m going to have to deal with coming off the pill to get pregnant, everything from those scary periods, to nose bleeds and bruising, not to mention the potential issues with delivering a child. And then the cycle will start again – as I have type 1 VWD, I have a one in two chance of passing the disorder onto any of my children. In a way, I’m excited by the prospect of getting to help a child through the challenges a bleeding disorder can bring.
If you are a girl who has just been diagnosed with VWD, or any other bleeding disorder my advice is firstly be kind to yourself. You are your own best friend, so don’t beat yourself up for needing extra care, support or rest. Get to know your doctors (you’ll have a GP, and will need a referral to a haemotologist, and a gynaecologist if you don’t have one). They will provide extra knowledge and support and will be on your side if you can tell them not just the medical information, but how you’re feeling, what you need to function in your world from your medication, and your opinion about the treatment they’re recommending. And lastly, join your local Haemophilia Foundation. Your local branch should be able to connect you with other people who can provide you with the support and friendship only other people in the same situation can understand.