I’m a self-proclaimed spoonie. It’s not a club I readily joined, it’s not something I would hope that anyone I love would join. It is however proving to be somewhat of a lifeline, this community that I have found. If you look on social media networks like Twitter and Instagram, the “#spoonie” can be seen all over the place, but it doesn’t really lend itself to an explanation. So what exactly is a spoonie, how do I fit in, and why are we so obsessed with all the spoons?
If you’ve not heard of the Spoon Theory before, let me introduce you to it. The Spoon Theory was first published by Christine Miserando on But You Don’t Look Sick. Written to explain in laymans terms the way that chronic illness and pain can affect how those who live with it live their lives, it has been a phenomenon in the chronic illness community. So many of the population who live with invisible illnesses which include fatigue in their symptoms are quite difficult to explain to those not in their shoes, and so this method has become a staple.
What’s an Invisible Illness?
Unlike things like a broken limb, or a physical disability requiring use of crutch/chair/other implements, invisible illnesses can be debilitating but appear completely normal on the outside. Common examples include Migraine, Cluster Headaches, Lupus, Fibromyalgia, Rheumatoid Arthritis, Crohn’s, Anxiety, Depression, Bipolar Disorder, Celiac Disease, Chronic Fatigue, Interstitial Cystitis, Spinal Stenosis, MS, Nerve Pain, Chronic Pain and various other Autoimmune Illnesses. Those who suffer with these illnesses may look completely normal and even function much of the time normally, but can be hit by debilitating spells which make it impossible to perform normal day to day tasks.
What’s This About Spoons?
Think of your days energy as being an amount of spoons. Each activity you do uses up a certain amount of spoons. It’s all about balancing what is absolutely necessary to be done and realising that once your energy is up, it’s up. Of course, you can borrow from tomorrow (as many of us wind up doing) but those don’t magically get replaced tomorrow, so often you can wind up able to do even less.
In short: we are limited in the stuff we can do, so it’s important to prioritise and keep a constant eye on our energy levels. Spoons aren’t just physical energy, but also emotional and mental energy.There’s no exact amount we’re given each day, it all depends on the circumstances in the days around it, the level of sleep we’ve gotten etc. It makes life very difficult to plan, and can make sticking to plans difficult, meaning people tend to think spoonies are flaky.
I said at the start of this post that it’s not a club I ever wanted to join, but I’ve definitely made myself comfortable in it now. But why? It’s important to have people around you who understand where you are in life. For me, being 25 and suffering with chronic pain and depression, finding people who get it can be difficult. It’s not that the people in my life aren’t empathetic, it’s just that it’s difficult to see exactly what’s going on. It’s also easy to brush it off. I’m well aware of how tiring listening to someone whinging about being in pain is so I try to minimise it as much as possible – whining isn’t going to change it after all. However, sometimes I just need to scream and shout and bitch about stupid little things which other people don’t see as a big deal but for those who get where I’m coming from, they’ll understand exactly why I feel the way I do. They also believe me when I say how I am.
Finding a tribe is an important thing regardless of your situation in life. I wrote previously about how I’d found my tribe for parenting online, and it’s the same for me with the chronic pain community. The Spoonie community is filled with honesty, with pick-me-ups, with things that make me laugh and cry and just are in the place I’m in right now. Things like memes describing life with chronic pain make me laugh on my down days. It’s proven educational – reading the experiences of others and connecting with them has led me down different routes and led to discussions of treatment options with my pain management team I’d never have come across otherwise. But mostly, it’s the support. Always there – it’s worldwide so there’s always someone online. Understanding the bad days and cheering the good. I’ve never met the majority of these people. That doesn’t matter. Not a jot. Knowing they are out there is enough.
Chronic Pain is something which affects me every single day. It’s something I’ve written a bit about, and plan to write a lot more about, because this is my little corner of the internet and I want to fill it with things important to me. It can be a lonely place, living in chronic pain. The Spoonie community breaks through that loneliness, and will be something I am forever thankful for. I hope you will never need to become a part of our club, but if you do, it’s a welcoming and understanding space.
Over on Facebook, I’ve set up a group for Chronic Pain/Illness Parents – just request to join and get talking to a community who understands what it’s like to have to balance family life with an ongoing condition. There are many more groups out there for other Chronic Pain/Illness Patients, some for individual conditions, others more wide spread. In general, I’ve found them to be wonderfully supportive and a real life line on difficult days.
Over on Instagram and Twitter I’ve found a number of different accounts and groupings focused on “Spoonie Life” – sharing memes, stories and advice. Sometimes you just need to vent about doctors not believing you, medication side effects worse than the illness or even just the fact that the world seems to be going on without you. If you search for the #spoonie you’re sure to find somewhere that understands.
I’d love to hear from others who may be part of the community, or those who feel like they may fit in but haven’t discovered it yet. Leave a comment below or drop me a line on Facebook or Twitter – I look forward to chatting to you.
For those looking for more information on all things Chronic Pain, Illness or Spoonie-Life related, Chronic Pain Ireland has some great resources over on their website. This resources list from Pain BC is also brilliant and well worth checking out.
BadMammy is on Facebook.
Prayers and smiles from an MS Spoonie that is glad to be connected to what you say. Thanks.
Thank you for this post. I have been in pain for about 20 years, had a gymnastics accident when I was 12. Since then it’s been pain every day, and SO MANY people don’t understand and think I’m just “always complaining” and “always making a big deal” out of it. “Oh there’s always something wrong with you…” Believe me, I don’t mention every single occurrence or I would be talking about it non-stop. I’m at the doctor’s all the time, and my colleagues think I’m “delicate” or “listen to my body too much”, that I’m not strong. It’s so annoying in the workplace and also with my parents/brother who think I’m a wuss. Luckily my husband understands!
For a few years I’ve also had pain in my hands and arms that is not related to the accident, and recently it got worse and my doctor thinks it’s Fibromyalgia. It’s not 100% sure yet but I can’t tell you how relieved I am to have a diagnosis and know that I’m not just a complainer!
I’m glad to hear that you found people who support you online and I hope I can also find my tribe 🙂
Comments are closed.