This story was originally published in National Haemophilia, No 224 December 2023.
If you could go back in time, what would you say to your younger self?
Growing up with a bleeding disorder can be challenging.
We asked some of our community members with bleeding disorders what they would tell their younger self. They reflected on what was most important to them when they were young and had some thoughtful and encouraging messages from what they have learned as they became adults.
Cheryl
You can handle a bleeding disorder. Learn as much as you can. You are your own advocate, but don’t be afraid to ask for help when you need it. And pay that help forward when you are able to.
Tim
Be more open and trust that people aren’t going to judge you for your condition. Most importantly, be patient and kind to yourself and cut yourself some slack for the times when you have no control over bleeds or your condition.
Chris
Learn to look after yourself. I was always scared of going to hospital so I would hide being in pain and treat my bleed at home so mum and dad wouldn’t take me there. Inevitably, I ended up in hospital anyway because I hadn’t treated my bleed with a dose of factor from the onset.
Sharron
Don’t worry. The treatment options will be much better when you are older and there will be many more options.
Dale
Don’t skip treatments, always ask about new technologies.
Look after your joints because they only get worse the older you get.
Always keep an open mind with regards to treatments and others’ opinions.
Respect the older generation of bleeders, they limp so we can run.
Share your story; you’d be surprised who would benefit from hearing what you’ve been through.
Do what you can to give back to the community that’s advocated and looked after you.
READ MORE
Check out the personal stories from other young people with bleeding disorders on:
Factored In, the HFA youth website
The HFA YouTube channel
Thanks to Cheryl, Tim, Chris, Sharron and Dale for their contributions.
