Living with a condition today is very different from when I was first diagnosed. It’s much easier to find documentation, research and advice on any number of strange health problems. Spelling Teitze’s Syndrome correctly is something of a demand for me now, let alone the 14-year-old who was originally diagnosed with it. Searching online in the pre-Wikipedia days for some explanation about what was happening to me was incredibly frustrating. I ended up reading up on the Tetsi fly and feeling remarkably alone.
Since then there has been an explosion on online content that offers support for people like me as well as honest advice and practical accounts of what living with a chronic condition is like. Every now and then I scan the web for any new support sites and that’s how I happened upon The Pillow Fort. A magazine for those suffering from chronic conditions, The Pillow Fort encompasses the idea that life is not over once you’re diagnosed with a condition. I was lucky enough to be given a few copies of their magazine to read through and I was pleased to find a range of informative and often quirky articles that ignored the doom-and-gloom of living with a health condition and instead offered practical advice. The magazines encompassed a huge range of conditions, many of which I would say are far worse than what I experience (because I simply can’t resist comparing conditions, however unhelpful that is). What I felt upon reading them was that I am not alone and when you’re dealing with something that is so outside of most people’s experiences, that’s the greatest comfort.
Learning to Explain Spoon Theory
Perhaps an interesting way that communities help with health issues is that we learn the best ways to communicate what we’re going through, instead of attempting through trial and error. My invisible but always present condition was a real challenge to explain when in my adolescence and this inability to communicate often resulted in accusations that I was making it up. When I was reading through the magazines and looking on the website I became aware of “spoon theory”, a method of explaining the constant compromises required to live with an ongoing condition. The article it’s based on can be found here but I’ll summaraise it very briefly.
- Imagine that you have a set of spoons and each spoon represents an exertion of some form.
- Depending on the condition, this exertion might be something big or it might be something as simple as getting dressed.
- You only have so many spoons for the day and once you run out then you’ll risk needing to borrow spoons from the next day, leaving you with less spoons to work with tomorrow.
This simple method perfectly explains the double-thinking required for many who live with a condition. And the internal bartering that I find myself doing surprisingly often. For me, I suppose wearing a bra is one spoon, wearing a sports bra for an hour is another spoon, going outside in the cold is one spoon, it goes on and on. I recently had to drop out of CrossFit classes because my body responded to the exercise with wall-to-wall dizziness. Nothing to be done. Move on and find something else that doesn’t use up so much of of my reserves. And I’m in a position where I can sometimes offset the spoons I’ve lost, if I’m fast enough (heat application is the best cure) but, again, that simply isn’t that case for most people living with a chronic condition.
And it’s not just the magazine that supports people with these health problems, as there’s also a blog on the website that offers regular advice, as well a shop that promotes cute products designed especially for those living whilst counting their spoons.
Pillow Fort Interview
I posited a few questions to Lizzy, the creator of The Pillow Fort and she was lovely enough to respond, explaining how The Pillow Fort is created and the importance it has:
Was there ever a specific “lightbulb” moment in the creation of the Pillow Fort?
The idea originally came after I posted a photo online of my new PJ top that said ‘sleep is my therapy’, and then a few weeks later another of my new microwavable slippers. The chronic illness community absolutely loved them and wanted to know where I bought them. The idea for The Pillow Fort was born because I realised that there wasn’t really a place to buy cute/fun things for younger people with chronic illness. It then grew out into a bigger idea, but that was the initial light bulb moment!
Who helps you create the issues of the magazine?
Well all the fabulous content comes from The Pillow Fort audience. Some people contribute every issue, others on a more one-off basis. I have people who help me proofread and edit all the articles. I put it all together and then send it off to designer (Bec Feldman) who sends it back looking amazing a few weeks later. And finally I get a few people to read through it and double check it’s perfect before I publish it.
Do you have a favourite issue of the Pillow Fort?
Not yet as I’m still emotionally invested in all of them! The first issue (New Beginnings) will always have a very special place in my heart though as it was incredible to see an idea I’d had come to life. I gathered together some of my favourite pieces into a free sampler so people can check it out before buying.
Is there any one element of what the Pillow Fort offers that you think really resounds with your readers?
The Pillow Fort is unique in its focus on genuine and authentic positivity. The Pillow Fort seems to really resonate with people who want to get out of that place of going over and over the negatives of life with chronic illness (either their own lives or other people’s) and try a different approach. I also think the fact there’s something for everyone in the world of The Pillow Fort means people can pick and choose what they engage with. We sell physical products, a digital magazine, have a thriving community, an active blog, and much more. Also, as far as I know, The Pillow Fort Magazine is the only magazine out there for and by youngish people with chronic illness.
The Pillow Fort is a lovely community that offers support and understanding for young people who may feel that they have no where to discuss their health issues. I keep thinking back on the relief I experienced reading the creative problem solving and sheer grit of some of the writers for the magazine. Normal media doesn’t intend to offend with it’s assumption that everyone participating is in full health, but it certainly is a breath of fresh air to read a magazine that tells the story of lives led without that luxury.
You can subscribe to The Pillow Fort Magazine here, or give their latest edition a try! If you have any young friends or children with a health condition then this could be an excellent gift, which comes out every two months on the 14th.
Kayleigh Herbertson
Kayleigh is a 20 something year old woman who is currently living with a chronic pain condition, a skin condition and a mental health condition. Juggling these three can be something of a challenge but she's always ready to take things on head first!
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