Once again I feel like I need to apologise for my lack of posts on here. The last few months have been both very busy and very stressful – with the very busy leading to knock on flare ups that massively knock me out. I’ve not really had all that much that I’ve wanted to share – and I don’t really believe in blogging for the sake of blogging!
I thought I would take some time today (and totally not because I’m procrastinating) to share something with you that I’m really excited and passionate about, and hope that you will be too.
Having a chronic illness is hard, we all know that. Having a chronic illness when you’re young can bring along a whole heap of other challenges. If you’re sick at the time when you’re supposed to be gaining your life experience (and having a lot of fun!) figuring out how to live the life that you want can be really tough. That can lead to depression which can exacerbate everything else and it’s just a super fun cycle.
A lot of us find ways. We study. Sometimes. We work. Sometimes. And sometimes we just can’t do any of that. But sometimes we can. Having an evening out with friends (because staying in bed isolated is always fun!) can stop us doing anything else for a week. But we keep on trying.
Unfortunately, we live in a society that still questions those of us who don’t look sick. There aren’t structures in place to offer the support for us to find ways to work and study and exist that don’t make us even more unwell. So not only are we fighting a battle to exist in our bodies, we’re fighting a battle for validation and support from the world around us. Psh. Like we have the energy for that. Amiright?
I’ve written a number of times about how I feel like I’m not living up to my potential because of my health, and how I constantly have to make adjustments to everything I do in order to try and achieve the things I want to. I’m lucky (I guess?) that I’m one of those people who would rather try something and have to stop than not try at all. Unfortunately, as I found out a number of times, this can often lead to a whole lot of disappointment when I invariably have to stop. In fact, I just found out that I passed the first module of my LLM with a merit – and it’s the first thing that I haven’t had to quit in five years, so yay me.
Unfortunately, I’ve finally come to the realisation that I can’t work in a “real” job. I can’t go and study anywhere offline. I need to be in full and total control of my schedule. That makes it hard. I’m lucky that in my early 20’s I was able to push through my ill health (boo for getting worse) and get experience that allows me to do some work from home. But it’s still not that simple. I push myself through working the odd day (and it nearly kills me) in the “real world” just for some extra money, and everything else I do in no way provides a stable enough income that I would have if I was able to work.
I’m a naturally very entrepreneurial person – I’ve got a tonne of projects that I do that I’m passionate about – but it’s got to the point where I need to start turning them into something more serious. I’m particularly excited to finally turn the IPF into a social enterprise (we’re hosting an event at the Shard tomorrow – so sign up to attend our EU youth debate if you’re interested!) but I wouldn’t have been able to do anything without the amazing work and support of our new co-director, Priyanka, who I am eternally grateful for running with a vision I had several years ago and keeping it alive when I was too sick to think about it.
But the thing I’m most excited about? Project Chronic.
It’s something I’ve been thinking about for a really long time, but after the last budget (and realising that the government wants to keep cutting support to disabled people) I finally decided to bite the bullet and go for it. The support that I need in my life isn’t there (and for a lot of my friends who have similar conditions), so fuck it. I’m going to create it.
Project Chronic is going to be the first charity in the UK that specifically supports young people (16-35) with chronic, invisible illnesses. There are two main reasons why I’ve chosen this age group:
1) I believe that the challenges that you face when you’re young are different from when you’re older, and having a group of people that have shared experiences can be of real value (I just know from my personal experience of being in groups with older people often made me depressed about my future)
2) Pan-disability charities are great, but when you have a chronic, invisible and fluctuating illness, your needs are very different from the “traditional” understanding of disability.
The whole aim of Project Chronic is to help and support people in figuring out how they can get on with their lives and achieve all the things they want to. Because, y’know, we have shit to do! And we’re sick of our bodies getting in the way.
I’ve got so many ideas, and I’m really excited to have just got the lovely Charley on board to help build this (#sickgirlsunite) and we are currently working out how we’re going forward with a ridiculous amount of awesome stuff for when we properly launch. And we can’t wait to share it all with you. Also, shout out to my little bro for his help too!
Think of it as the place you come to after you’ve had your diagnosis and have learned all you can about your condition and need to figure out what to do next.
There will be vital resources and really in-depth (pretty) fact sheets about a wide range of topics from the people who really know their stuff. These include: finding ways to work when you’re sick, studying, explaining your illnesses to family and friends, and much more. And, because no two experiences are alike, we’re also going to share tonnes of personal experiences on every topic we cover from all different people (side note: those of you who have emailed me about your university experiences – thank you – I’m still catching up with my emails!)
But that’s just the basic online stuff. There’s also going to be personal mentorship, networks, and a support community so we can all get together and support each other. I really want it to be a productive and positive place – yes, chronic illness is hard, but I’m so sick of the depressing and self-perpetuating groups that I see all over the internet. There’s a way of talking about your struggles (and yes, of course, it’s valid and important to talk about them) without it taking over. How can we be ambitious and fabulous and sassy (even if we’re stuck in bed) and create and contribute?
The thing I’m most excited about is working with organisations to create opportunities to help people learn skills and find ways to work in non-traditional ways. Groups and networks are great, but what I really want is to help people get access to tangible things that can make a difference to their lives.
So yeah! Basically, we’re hoping to create something that changes the status quo for young people with chronic illness. I feel like we’re losing a whole generation because of the lack of opportunities and support. And that makes me angry. So it’s time we did something about it. I also think that by having a “pan-youth invisible illness” organisation we can bring our voices together to try and affect change. Thank goodness for the internet, eh?
So, here are a few things: make sure to sign up to our mailing list to be the first to know when we launch. Share this post with anyone you think would be interested, follow us on Twitter, Instagram & Facebook and please do leave any thoughts in the comments below of the kind of support that would be beneficial to you.
Also, if you (or know people!) who run awesome projects and organisations that we should be in touch with, please do get in touch at firstname.lastname@example.org.