I want to start this post by saying my general experience with this online community has been wonderful, and I'm so grateful for it. This community has brought me almost nothing but comfort over the years and I've met some of my favourite people through it. However that doesn't mean everything is entirely positive all of the time, and I wanted to give my honest take on what being a part of it is like.
If you're unfamiliar with the term "spoonie" then let me explain. It stems from the disability metaphor known as the Spoon Theory, created by Christine Miserandino. If you've not read this already I would highly recommend it, it can be found here. Miserandino's theory uses spoons as a visual representation of someones energy supply for the day - the more energy you have the more spoons you have. These spoons are taken away from you throughout the day depending on how much mental or physical energy you spend on different tasks.
The theory aims to explain the mental calculations a chronically ill person will make many times a day to determine whether or not a task is safe to complete. For example, if I have a shower, will I have enough energy to make breakfast? If I drive to college will I have enough energy to do any work once there? Will I be able to safely drive home? If I engage in conversation over dinner will I still have enough energy to continuously lift my fork to my mouth? It goes on and on.
Miserandino suffers from Lupus herself, but the wonderful thing about the Spoon Theory is that it's applicable to many different health issues. Because of this, people around the world suffering from different conditions find they can relate to it - and in turn, each other. An online community was born, made up of all these people that can relate to this way of life. Because that's what chronic illness is, it changes the entire way you live your life.
Chronic illness is more than just symptoms. This is why this theory works, because it doesn't relate to one symptom in particular. I've bonded with people online that have entirely different chronic illnesses to me. We have different primary symptoms, our bodies function differently, but our way of life is the same. The internal struggles are the same. The fear and frustration is the same. This is what we bond over.
I would be lost without this community of people going through similar things to me. The friendships I have made are priceless. As much as you can have a supportive network of family and friends, if they're able-bodied they can only understand what this feels like to a certain degree. No matter how hard they try or how much they listen. It's like anything really, unless you've experienced it first hand you're one step removed. One of the pros of this online community is that almost everyone in it wholeheartedly understands. They've been there themselves, they know what it's like and they're feeling it too.
When you're going through something difficult and someone says they know what that feeling is like, it feels odd to say "I'm glad I'm not the only one". Because obviously I'm not glad that you've experienced the same pain I have, I wouldn't wish it on anyone. At the same time though, we all feel the need to be understood and it's comforting to know you're not the only one suffering in the way that you are.
Another pro of the community is it's online based, which means you have access to it from anywhere at any time. You have access to people around the world from the "comfort" of your own bed. You can scroll through stories similar to your own at 3am on the bathroom floor. There will be someone within this community that you can talk to literally any time. It's like holding hands through a phone screen, bathroom floor to bathroom floor. That is a wonderful thing.
Years ago I found this online community to be a rather competitive place, but I don't think that's really the case anymore. There used to be a lot more drama involved and emotions ran high. I understand where this mentality came from. Chronic illness steals many parts of your life from you, it can be isolating and you can feel lost at times. If you're spiralling like that some people are bound to take it out on others - intentionally or not.
There used to be more of a mindset online of "winning" at chronic illness. Who had clocked more days in hospital, who took the strongest meds, who's life was hardest. Again, I understand where that comes from, but let's be honest it doesn't do anyone any good. I understand wanting your struggle to be validated, but people were going about it wrong. I know there are some people that still feel like there is a competitive element to our community, and I'm sure that's true. I just happen to not personally see it unfolding as much anymore.
Another negative is the unsolicited advice. Now this one is an odd one because most of time people are meaning well I'm sure. I'm talking openly about my poor health online, I'm being honest about the hardships, and so people sometimes feel inclined to point out something I should try to help. I think this is maybe more prevalent with a condition like ME where there is currently no known cause, treatment or cure. It is seemingly left highly up to the individual to try to "cure themselves" until medical science catches up and has some sort of breakthrough.
Unsolicited advice is a difficult one because sometimes it's helpful and sometimes it's not. Generally speaking, if it's coming from someone in the same position as me I'll be more open to hearing them out. Particularly if it's part of a larger conversation and not just a singular message of advice. I'll also be more inclined to listen if the advice is about something "smaller" and not something monumental like curing my illnesses.
For example, if a friend of mine is telling me they're suffering from a chronic sore throat at the moment as an additional symptom, I might add into the conversation that I found a humidifier helpful for mine. I will then go on to continue to listen to them and offer up support in ways that don't involve advice. That's entirely different to me messaging a total stranger to tell them I have the magic cure for their chronic incurable condition. And that I know for a fact it will work for them even though I've never spoken to them before because my Auntie's friend's dog was cured in this exact way. Know what I mean?
The last thing I want to touch on is the complications of the online friendships. I care about my spoonie friends deeply, I want them to know I'm there for them and I want them to be able to rely on me. We all know what it's like to have friends leave or drift due to our chronic illness. And so we all try to almost fill each others gaps left by other people. We don't want anyone to be alone.
But the problem with that is that there's a lot of us, and we're struggling ourselves. It can become a little bit overwhelming when you're knackered and sore but you still want to check in on a lot of people every day or every other day. All of my spoonie friends are struggling every day. They're potentially scared, lonely, or frustrated. I want to be there for them. They want to be there for me too. But if you're dealing with a lot on your own plate, how can you adequately help others?
All we can do is try our best. I've personally found that being a part of this online community is 100% worth it, and the positives far outweigh the negatives. If you're looking to meet fellow spoonies online, I'd recommend Instagram as the main platform. Search through hashtags such as #spoonie, #chronicillness, #chronicpain and #chronicfatigue. I can almost guarantee you'll come across something that makes you laugh, something that makes you feel seen, and someone you want to get to know better.