My Leadership Journey (complete with chronic illness hurdles)



Pillow Fighters ClubIn November last year, I had the honour of being invited to speak at the Common Purpose Frontrunner for Disabled Students course – a 3 day leadership course. It was really special to be back, because I actually took the course myself in 2012 AND this was my first opportunity to meet some Pillow Fighters in real life!

I was invited to speak at a session titled ‘I Made A Difference’, where people come in to share personal stories of leading in different situations, highlighting what made me want to change things and step up as a leader, and how I have gone about making things happen. I thought I was part of a panel debate session, but it turned out it was just me for 45 mins!

I opened with the following prepared speech, and then went to a Q&A. It was such fun and I left on such a high. Loads of people came up to me afterwards, and it was really inspiring how many people connected to different parts of my story.


I’m Lizzy, I’m 25, and I’m also a Common Purpose Frontrunner for disabled students alumni from Glasgow January 2012.

Common Purpose Frontrunner for disabled students

I’ve always considered myself to be a natural leader. Throughout my life I’ve always wanted to take on leadership roles and get stuff done. I’m also extremely competitive, and I think the two were inextricably intertwined.

So there I was, 16, doing very well at school, working my way up the ranks in GirlGuiding, competing at a national level in athletics, and generally on track to be awesome and successful at anything I turned my hand to in life. All the potential in the world.

Then I got ill. 7th March 2006. Chronic headache and fatigue. Out of school for most of the year. Only took 1 AS Level. Long story short, I had Chronic Fatigue Syndrome, but wasn’t diagnosed until much later, athletics stopped, Guiding stopped, took a gap year and somehow managed to get to Uni through utter determination that my life would go ahead as planned.

I thrived at Uni. Yes, I still wasn’t 100%, and yes I still had headaches nearly all the time, but I thrived. In my first year I mustered up the courage to run to be Women’s Officer in my Students’ Union (unusual for 1st years to run). I won by quite a margin. Did that for a year. Hated. Couldn’t delegate to save my life, and was basically just quite miserable. Then I ran for LGBT Officer uncontested the following year and go that.

250754_10150194201653549_1918278_nIt was as LGBT Officer that I really honed my leadership skills. I took over a society stuck in a rut, with fairly low attendance, a committee of 15 who hated me because we were in rival gay friendship groups and who’d mostly just run for the lols, and then me in my final year of Uni and doing several other roles in the Uni and Students’ Union. But something magical happened. Through gentle encouragement and teamwork the committee and I completely turned around the LGBT Society and went on to win National NUS LGBT Society of the Year. Ya’know when you’re just in your element and exactly where you’re meant to be? That was my third year at uni as LGBT Officer.

But all good things must end. Ran in the by-election to be on SU Exec. Somehow won despite being the complete opposite of the people who usually win. Now I found myself in a team (not as leader), full of people who thought completely differently to me. It was a hard year. My health deteriorated and I developed fibromyalgia. I became extremely depressed (not that I realised at the time). I was ridiculously burnt out from student politics. And my shiny successful superwoman persona started to show cracks and crumble around me.

Started a masters, switched masters, dropped out of masters because I was too ill and depressed to process complex theological ideas. I was a complete shell of the person I used to be. I’d lost all my confidence, drifted from most of my friends, and honestly couldn’t grasp/comprehend that there was a purpose to my life. It was my rock bottom. I went on to ESA (disability benefits) with no plan for what I was going to do next.

instagrampicsMid 2013 I posted some photos online of my new microwavable slippers and a t-shirt that said “sleep is my therapy”. People LOVED them, especially those in the chronic illness/spoonie community. It was a lightbulb moment for me. Create a business specifically for young people with chronic illness selling cute/fun, but practical products. So much of the healthcare/chronic illness industry is targeted at older people and very while/clinical. About 8 months later The Pillow Fort opened. It’s grown A LOT since then, specifically after a group course I took in February 2014 that really clarified that the message I wanted to spread was that positivity in chronic illness is so important. I’d been in all the communities that just wallowed… and after the initial “oh! They understand me!” excitement wore off, I just felt worse. So The Pillow Fort grew from an online shop, to include a digital magazine (for and by positive young people with chronic illness) and a thriving facebook community (with the only rule being positivity only). The facebook community in particular, called the Pillow Fighters Club (and I know we’ve got a few Pillow Fighters here today!), has been incredible.

horizontallogowithbg600pxSo, what started out as a business idea, born out of a frustration for what currently existed for young people with a chronic illness, has become a movement far bigger than I could have ever imagined. And I guess that makes me its leader?

But what I’m doing right now is a million miles from my Students Union Officer position leadership roles. But I’ve grown to realise it’s an equally valid form of leadership.

I no longer have a committee, but I do have a team of volunteers who help me moderate the community and write reviews of books that people send me.

I wasn’t elected to this position, and no-one gave me permission to do it, but every time someone emails me to thank me for creating The Pillow Fort and tell me about the positive impact it’s having on their life, complete strangers I might add, I know I have the support of other people. Other people share in my vision and my message, just not through formal structures anymore.

I’ve also been asked to talk about the barriers and challenges I’ve faced as a leader. It’s all the usual fear stuff for me:

  • Who am I to do this?
  • I don’t really have a plan
  • I’ve never done anything like this before
  • What if I let my audience down and don’t deliver
  • What if I’ve created something too big?

But what I’ve learnt is that there is no-one else who can do what I do, the way I do it. If I don’t do The Pillow Fort and if I don’t share what I’ve learnt from my unique life experiences, it won’t happen at all. I believe it is my responsibility to make positive changes in the world in the way that only I can.

It’s hard sometimes. I don’t always “feel like” working on The Pillow Fort, but then a tweet or email will come in from someone who’s taken the time in their day to thank me for what I’m doing, and I’m just like “Woah. This isn’t about me, this is so much bigger than that, and it’s terrifying, but I owe it to these people to keep going.”

That said, my best leadership advice:

  • You’ve got to be in it to win it and those who don’t ask, don’t get. (Today is a classic example of that, I only emailed if there was any way I could take part in this course a few weeks ago).
  • Authenticity about who you are, and honesty in that pretty much trumps everything else.
  • Just start. Just start right now. You don’t need it to be perfect, and you don’t need to have it all figured out.
  • Set clear boundaries for yourself so that you don’t burn out, but be flexible as new opportunities arise.
  • Seek advice from the people who’ve already been there, or from people you’re leading/hoping to lead. Friends and family mean well, but often don’t have the right knowledge/experience to give you good advice.
  • The magic happens outside your comfort zone. I always used to know this, and live by this, but then I somehow forgot, and my life crashed in around me. I’m sure many of you are outside your comfort zone on this course, but stick with it.
  • Support and encourage those around you. Leadership is rarely ever about you and what you think or want. It’s about the hopes, dreams, visions and aspirations of those around you.

So, even though I’ve always considered myself to be a natural leader, and many of you may not have, my greatest leadership role (starting up and growing The Pillow Fort) was never about me as a leader. I didn’t bring my natural leadership skills to it. I brought my passion for my message, and everything else grew from there. So I really do think anyone can be a leader, it just takes the right circumstances and situations and for you to step up to do what only you can do.