and even harder with an inherited bleeding disorder.
Last weekend I did the round trip to Perth, Australia to attend a workshop on mentoring young people with a bleeding disorder. Last year, I got to be involved in a project run by Haemophilia Foundation Australia where a website for young people was created, and this year we’re taking the next step by setting up a national youth mentoring network.
The need for face-to-face catch ups was identified by a research report, but I can also attest to this from my own personal experience. Being a teenager is a pretty confusing time in the best of cases, but when you also end up with a bleeding disorder diagnosis (or you’re struggling to learn how to cope with your diagnosis on your own after years of heavy parental involvement) its even more confusing. Added to that is the fact that most young people with a bleeding disorder don’t know anyone else with their condition – the isolation is real, community based (instead of physical), and adds to the distance that can be placed between you and the people you go to school with. I spent almost 2 years suffering from wildly out of control menstrual bleeds, anaemia and a whole lot of general ill-health prior to my diagnosis and it definitely disconnects you from your peers. Aside from generally feeling sick, the fact that the worst of my bleeds were menstrual made it incredibly hard to talk about with anyone else. I had (and would be later proved to be not unreasonable) a fear that I’d be doubted, that I’d be told I was exaggerating, that it wasn’t really as bad as I thought. Or just straight disbelief.
For those diagnosed a bit earlier on in life (and this often is the case for the blokes with the more severe diagnosis), there is an additional struggle with their existing support structures. The poor parents of any child with a bleeding disorder deal with the first brunt I got myself – learning of the diagnosis (or knowing its a possibility prior to birth), learning how to navigate the medical system, even learning how to infuse and treat their kid themselves. This is all done for their child, and the learn to be thier protector, their decision maker because they understand the consequences much better than their child. But once a person starts in their teenage years, those higher think skills and risk taking desires start to fully develop, and the patient themselves both wants and needs to learn how to manage their health on their own terms – unfortunately, this can strongly conflict with the parent-carer who is holding on tight to ensuring their unwell child is kept safe.
And this is on top of all the other stuff you deal with growing up, like chosing a university, travelling interstate or overseas, starting a new job, making new friends, finding a partner – all of which has an additional complexity of the bleeding disorder. To tell or not to tell a new boss about your condition? Will needles be an issue on an international flight? How do I tell my new boyfriend/girlfriend?
The main aim of the mentoring network is to give young people (and our definition is quite broad – 13-30!) a peer support network of people they can talk to about problems, and learn from how someone else has handled the same thing. Its one thing for a doctor to tell you ‘the rules’, but its another thing to see or hear how another person who actually lives with your condition has dealt with it. Which I think everyone understands, it is after all, one of the prime motivators for anyone to have friends (“what, you’ve done that too? That’s so cool you get it!”). I certainly appreciate the support and community, despite only being connected for a bit less than 2 years. I’ve already met lots of people of all ages who have at least a reference point for my issues and its incredibly comforting being able to tell someone your problem and have them understand, or even just answer that most innocuous question “how are you today” honestly and not have them look at you like you’re a complete weirdo. On my way home on Sunday there were a bunch of us sitting in the airport all discussing our relationship with pain and pain releif, and despite the fact not one of them had my diagnosis or experienced it the same way I do, we all had a reference point and understood each other’s issues.
This is the type of experience we want to share through the youth mentoring network – the ability to associate, to have other people understand your issues, to help simply by understanding is the kind of support I don’t think I can ever put into words.
If you’re a young Australian with a bleeding disorder, I’d strongly recommend getting in contact with the national organisation who can put you in contact with the mentors in your state. Even if you’ve got all your bleeds under control, just sharing may prove to be a beneficial experience. And you may be able to inspire or help other young people live a more fulfilling life. I also look forward to seeing you in Melbourne. If you have any type of medical condition, I can’t emphasise how helpful it’s been for me to finally find others who understand from the inside, not just empathise. It’s something everyone could benefit from, and I hope all of you out there are taking steps to connect with your people.