Ever thought about launching your own charity? Natasha Lipman, founder of Project Chronic is doing just that. Frustrated by a lack of support, funding cuts and misinformation, Natasha decided to do something about it. We interviewed Natasha to find out what role blogging played in setting up her charity, and how she is turning her chronic illness into motivation to help and inspire others.
Can you share a little bit about yourself and your own personal health journey?
Sure! I’m 27, and I’m a chronic illness blogger, part-time Masters of Law student, a social entrepreneur at the IPF, soon to be charity boss at Project Chronic and collector of various slightly obnoxious do-gooder titles (I’m a Global Changemaker, a Virgin Media Pioneer and a Rhize Emerging Catalyst) from North West London. My background is in international relations and entrepreneurship.
I’ve suffered from Ehlers-Danlos Syndrome pretty much my whole life, but I wasn’t diagnosed until I was 21. I was always unwell but we didn’t know why, and we kind of just dealt with everything as an acute experience! Then a few years ago I was out in my wheelchair with my mum in the Fenwicks cafe, eating a jacket potato (and I remember this really specifically) and I nearly passed out. That was the start of PoTS affecting me very significantly. I was in and out of hospital non-stop, trying new meds, seeing more professors (I think I was seeing around nine at one point). I had really severe reactions to pretty much everything that I was given and that triggered a really severe histamine intolerance (they’re all related to EDS anyway) and then I was also diagnosed last year with ME/CFS. It has been a super fun time. You can read about it in a lot more detail on my blog!
“I’m particularly concerned about a lot of people on social media promising cures… It’s dangerous for vulnerable, sick young people. “
I experimented a lot with diet and lifestyle over the last few years, and while I believe that diet plays a huge role in how I feel, it’s not a silver bullet. I’m particularly concerned about a lot of people on social media promising cures and the amount of pseudo scientific misinformation out there. It’s dangerous for vulnerable, sick young people. I kind of just want to keep yelling ‘correlation does not equal causation’ until I’m hoarse!
I got into blogging and instagramming when I got more unwell a few years ago, and it has been really great connecting with so many amazing people. In fact, I got to work with Fab on Health Bloggers when it was just a baby! That opened up a huge community to me, made me confident enough to be honest and public about my challenges and (I hope) able to offer inspiration to others who are experiencing similar things.
“You never know where starting a blog can take you. It has opened up so many opportunities to me, and I don’t think I would have had the network to launch this charity without it.”
We’re so thrilled to be a part of your journey! You are in the process of setting up a charity called ‘Project Chronic’.What was the motivation for launching the charity?
I have a lot of people in my life (and also that have followed my blog and my Instagram) who also suffer from chronic illness. We often talk about how much we want to do things but because of our health we can’t. The problem is, if there was the right kind of support out there, we probably would be able to do more than we currently do.
It’s actually something I’ve been thinking about for a while. Whenever I would get a new diagnosis I would join the relevant Facebook group and end up getting really depressed. There was always a really negative tone and a lot of older people whose lives had been ruined because of their health. Don’t get me wrong, I totally empathise, but as someone young who wanted help figuring out how to get on with my life, it really didn’t help me.
The last straw was during the last Budget in the UK. There has been cut after cut to support for disabled people in this country, and for those of us with invisible illnesses it’s hard enough to get the support to start with, let alone our safety nets being cut because the government seems to think that taking money away from disabled people will encourage us to work! Help me find a job that I can do – then I’ll get back to work.
“I think everything just all kind of hit me – there’s so little tangible support – that I had to do something about it.”
I think it’s also really important to note that there are some really awesome schemes out there, but a lot of them are for people with more ‘traditionally understood’ disabilities. While this is wonderful – I couldn’t do a 3 month special scheme. So there needs to be more flexibility and understanding about what we actually mean when we talk about disabilities that are invisible.
What are the main aims of the charity?
Essentially, we want to help young people with chronic, invisible illnesses find a way to live their lives and achieve the things they want to achieve. We want to level the playing field and offer advice, support and really tangible opportunities. We essentially want to be the place you come to after you’ve got your diagnosis, read all about your condition on the relevant charity site, and then need a little bit of support figuring out what to do next!
Who will the charity predominantly offer support to?
We’re going to focus on helping young people (aged 16-35) with chronic (long-term) invisible illnesses.
So, what is an ‘invisible illness’?
An ‘invisible’ illness or disability is just what it sounds like – an illness or disability that can’t be seen. Our traditional understanding of disability is very much focused on someone looking “different”, and disability is something that we believe should be very tangible. However, for those of us with invisible illnesses, we can be really, really unwell, but from the outside we look entirely “normal”. This can add a whole other level of challenges because not only do we struggle to get the help and support we need, we’re doubted in the first place.
“For those of us with invisible illnesses, we can be really, really unwell, but from the outside we look entirely ‘normal’.”
For example, last night I was at Camden tube station. I was about ready to pass out and I could barely put any weight through my legs. To get into the station, you have to go up a bunch of stairs. So I went to the guy at the exit bit (no stairs) and said “Hi, I’m disabled, I really can’t handle the stairs, is there any way I can come in here”. He was so rude and dismissive to me, not believing me and being really aggressive in asking for proof (which, luckily, I have), but it was really humiliating and upsetting.
How will the charity offer support to chronic illness sufferers?
There’s going to be a bunch of stuff! Firstly, we’re going to offer some really helpful fact sheets (which we’re writing with some expert partners) on all different aspects of life with chronic illness, we’re setting up both online and offline support groups (really positive ones!!), and most importantly, we’re working to offer mentorship, scholarships and opportunities to help people find ways to work that don’t make them sick (or at least can work around them!).
What are the main factors to consider when launching your own charity?
As obvious as this sounds, I think it’s really important to know who you want to help and why. There’s no point repeating efforts of something that’s already out there. I have a very specific vision in my mind and this means that anything I do can drive that. I’d also recommend making sure that a charity is the right method to achieve what you want to achieve – would it be better suited as a social enterprise or a business?
“As obvious as this sounds, I think it’s really important to know who you want to help and why. There’s no point repeating efforts of something that’s already out there.”
There’s also a whole bunch of legal stuff you need to sort out – so it’s worth finding support for that. I know that I’m most passionate about the big picture and getting the actual ‘purpose’ stuff done – whereas looking at legal documents and doing grant proposals etc is what I enjoy the least. Make sure you can find people to help out where you may be lacking.
Oh, and have an idea of your funding strategy. That’s kind of important, too!
What obstacles have you faced so far in the launching process?
For me, the biggest struggle is finding the energy to get everything done that I need to! It’s very difficult, especially because a big part of launching anything really successful usually requires a huge amount of networking. It’s just not something that I have the energy for anymore (and also big groups of people now make me anxious – this is a new development!) I’m trying to balance my health with what I want to build and make sure that what we end up offering is as tangible and helpful to people as possible.
How can people get involved with Project Chronic?
If anyone knows anyone that would like to donate, that would be amazing! Otherwise for now, you can join us on Instagram, as we have a really awesome community on there already ,and definitely check out our other social media pages. If you have any cool ideas or potential partnerships, please do get in touch with me at firstname.lastname@example.org. Otherwise, hold tight, and we’ll tell you more information soon!
What is the next step for you? and does the charity have a launch date?
I’m not putting a huge amount of pressure on myself to get something ready by a specific date. I’m working really hard with help from the awesome Charley to start building things up, going to meetings when I can and building all of this in the right way. I’ve got some really exciting partnerships lined up, and some really amazing things that I can’t wait to share in the future.
I’d really recommend following us on social media and signing up to our mailing list for more information. We’re planning on launching a crowdfunding campaign to cover startup costs in the next few months – so that’s definitely something to look out for!