Spoonies are courageous people who create virtual community in the face of incurable chronic illness. Many of us identify with the disabled community, but we face rather unique experiences being chronically ill. Our online spaces are a safe haven in a world where not only our illnesses are invisible, but we can be too.
So, before we go any further, let’s address the big question: what’s with the spoons? Spoon Theory was created in 2003 by writer Christine Miserandino who suffers from Lupus and Fibromyalgia. She came up with the idea at dinner with a healthy friend who wanted to know what it was like to be poorly all the time. She grabbed a handful of spoons and passed them to her friend, explaining that these were her spoons for the day and everything she did would cost her a spoon. Most healthy people have unlimited spoons each day. Miserandino shared the tale on her blog and from there The Spoon Theory was born, leading us chronically ill folk to call ourselves ‘spoonies’. Now if you do anything else today (after reading this post of course), I urge you to spend a spoon reading Miserandino’s beautifully eloquent and full version of the story.
The origins of the online chronic illness community were in fact much earlier than the creation of The Spoon Theory. I have been chatting to Tom Kindlon who has suffered from M.E since 1989, and was diagnosed in 1994. He has been an active member of the chronic illness community since 1995 when he joined an online forum to chat with people in similar situations, and more recently through social media. He told me that his ‘energy-limiting chronic illness means’ he’s ‘never actually attended an in-person support group in all those years’ and so it has been ‘great to have access to all the online discussions.’ The importance of our community really hit home when I learnt about Tom’s experience – twenty-seven years of isolation eased. He explained ‘most of my contact with the outside world is online. The internet has been a godsend in enabling me to connect with others’ ‘in a way that doesn’t drain my energy stores too much.’ We may have progressed with the times from text-only forums to social media, but the spoonie community has very much remained a constant.
I am a very proud spoonie, but admittedly I still resent the fact that my M.E completely controls my life. I first went seeking other spoonies when I was finally diagnosed, after years of being dismissed, disbelieved and gas lit by medical professionals. One week before diagnosis, I was very poorly and desperate for answers, as I watched my life slip through my fingers at an alarming rate. I was told by a doctor to consider getting out for a run and to call back in six weeks if I got worse. A run?! Six weeks?! Worse?! I felt like I was losing all sanity at this point; I could barely leave my bed, yet doctors were still telling me I was okay, I just needed to exercise more? At this point, I was at the end of my tether and dreaded to think what worse looked like, but M.E has sure taken me there.
Now I spend most of my time housebound, living back with my parents for support, I struggle to work, and I am a dancer who can no longer dance. My friends and family struggle to understand what it is like, and many find it easier to not interact with me at all. When I am well enough to socialise, I can’t always join in conversations or do the things I used to. When I turn the TV on, I don’t see anyone like me, I rarely read about anyone like me, and I don’t know many people like me IRL. Yet, many have it much worse… Being chronically ill truly can be one of the loneliest existences.
The online spoonie community is the light in the darkness. It is a space that I can access. A space where I feel safe. This is a feeling that resonates throughout the community: Nia echoed that ‘the chronic illness community means solidarity. It means solidarity in a world that’s so often misunderstanding, non-inclusive, difficult and judgemental’. When I first found spoonies on Instagram I was a total catfish for a while, too scared to join in. Fast-forward six months and I am now an active member of the community on several platforms – credit to the welcoming nature of spoonies. These online spaces connect people from all backgrounds, united by long-term illness. As Nia rightfully said, it’s ‘a place to have your voice be heard and validated’ ‘by a collective who are kind, willing to learn and open-minded’. Spoonies are definitely the most accepting people I know, and intersectionality is key here.
Sainab is a friend I have met through the online community on Instagram; she reached out to me in my time of need, and I will be forever grateful. She articulated her thoughts on the spoonie community so wonderfully: ‘the online chronic illness community exudes hope for me. When I felt most alone and misunderstood, the friends I have made here uplifted me and have given me an endless portal of resources.’ This gratitude we feel is widespread: Nia told me ‘I’m so proud to be a part of it and grateful every day for it. It saved me and countless others.’ I feel I have been saved multiple times in just a few months. Pippa is a blogger living with M.E and feels she ‘would have been lost without the chronic illness community.’
Even now with a diagnosis, I am forever having to justify myself to people because my illness and pain is invisible. Ardra suffers with MS and refers to a classic line in her blog: ‘but you don’t look sick?’ She really speaks for all of us when she says ‘the whole thing feels like a sneaky accusation of phony fakery. Of laziness.’ To all my healthy readers, please know that you will only ever see a spoonie when they are well enough to be seen. Ellie is a digital creator who also suffers from M.E, and she quite rightly explained: ‘people are very quick to judge others for how they cope in a situation they’ve never been in – we need more compassion.’ Spoonies may be limited in energy, but we are overflowing with compassion.
Our online community is a place I can exist as myself. I am completely accepted and understood, no questions asked, or assumptions made. Non-surprisingly I am not the only one who feels this way! Mark lives with M.E and experiences the ‘great relief’ that comes with ‘engaging with people who are going through the exact same situations as ourselves’. Spoonie and Mum Andrea agreed, that she feels ‘understood and supported’ by the chronic illness community. When I spoke to Ellie, she explained ‘connecting online means we don’t have to do it alone’ and ‘we deserve to know we aren’t alone.’ Jenni is also a digital creator who suffers from EDS, POTS +. She feels ‘the support system that the online community provides’ is ‘invaluable.’ I couldn’t have put it better myself.
Many of us connect through shared medical traumas and frustrations, something that can be incredibly healing. When speaking with Mark, it was clear he values having ‘shared experience with navigating the healthcare system and treating symptoms’. As Jenni told me, it ‘is so important as people with chronic illnesses are so often let down by medical systems’ ‘so having others who truly understand is an integral lifeline.’ However, this is not the fundamental aspect of our community, as Pippa said, ‘it’s not just about the medical aspects and information-sharing – it’s being part of a place where you know you are believed, valued, and belong.’ Nia highlighted that we are not ‘waving banners saying “we hate doctors and everyone who’s healthy sucks”’, ‘it’s a gentleness that says I see you, I feel what you’re going through, I wish you didn’t have to, and I want to metaphorically stand by you as we get through this stuff and fight for better.’
A very interesting point came up when I spoke to Ellie and is that ‘having people that understand you is something that we take for granted.’ I know it is something I was taking for granted pre-chronic illness. I have a lot of time for reflection nowadays and have realised I was previously only grateful for the ‘bigger’ things in life. In doing this, I overlooked the important moments and in fact took a vast amount for granted. Let’s be honest, we all do it… But being grateful for the life we have right now is so important to being a better ally and acknowledging our privileges. When I was listening to Brené Brown recently, something she highlighted has stuck with me and I hope speaks for other spoonies – if you are grateful for the life you have, then we know you understand what we have lost.
Another thing that can be easy to take for granted is representation, especially in mainstream media. Representation is vital, and honestly, it can be easy not to give it a second thought when you are in a privileged position. This is yet another reason why the online spoonie community is a beautiful place; we create our own representation. I love being able to see such inspirational people with chronic illnesses whenever I go on social media.
Some particularly inspirational spoonies choose to spend some of their energy showing the harsh reality of their chronic illness, the raw parts that people don’t see. I admire them for that because it takes the utmost courage. These posts aren’t solely for chronically ill people to relate to, but they are seeking the attention of healthy people. We are desperate to be seen, heard, and believed. We need awareness and the funding that goes along with it. Most of our illnesses are seriously misunderstood, misdiagnosed, and incurable due to the lack of funding for research. Ironically, most people fighting for us are those of us with limited spoons to fight with. We rarely get the attention we need.
How to be an ally-
I can almost hear you shouting at the screen…How can I help? How can I be an ally? How can I #StandWithSpoonies?
The answer has a similar basis to how to be anyone’s ally, and some points are particularly important in being an ally to disabled people.
1 – Listen and believe us
2 – Stay curious
There are countless resources online; take advantage of these and educate yourself. We will never know everything about anything, there is always more to learn so keeping an open mind is essential.
3 – Amplify our voices
Share our posts online and help us fight for justice when we are discriminated against. Call out any ableist language you hear whether that be on or offline. We often have a lot of internalised ableism – can’t be helped when we grow up amongst so much of it. But I encourage you to take responsibility and challenge your internalised prejudices.
4 – Always consider accessibility
Both on and offline. Whether this is in the workplace, in social situations or simply out and about. I think this website is a great place to start in understanding accessibility requirements.
5 – Help hire more spoonies in accessible ways
Employers can get in touch with a charity called Astriid which matches talented spoonies to inclusive employers. An employee at Astriid told me: ‘We have a massive talent pool of individuals seeking work so we can help to diversify their workforce, and we also offer talks, training, research, and consultancy.’ You can contact them here.
6 – Follow more chronically ill creators
I have compiled a handy list for you so no excuses now:
Ardra Shephard – aka Tripping on Air
Finn – aka Finn the InFinncible
Jameisha Prescod – aka You Look Okay To Me
Jenneh Rishe – aka Life Above Illness
Nia – aka The Chronic Notebook
Thank you for reading!! Please do comment or message me on socials (links at bottom) with any suggestions, comments, or questions. Remember, sharing is caring – if you liked what you read please do share it on social media and with friends.
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