Recovering spoonies: lacking online representation

I have never really been one to use my blog for super deep retrospection or to advocate for anything in particular, yet this blogpost has been in the back of my mind for a while and well…. here it is.

Like most people I turn to social media for inspiration and motivation. This can be just daily motivation to keep me going through the day, or for inspiration with regards to wellness and leading a healthy life style. However, I have increasingly found myself dissapointed with the lack of representation for recovering spoonies like me. If you are not sure what a spoonie is, Wikipedia is your friend ;).

By far the majority of wellness and lifestyle influencers, vlogers and bloggers cater towards able people. They constantly repeat to you that for a healthy lifestyle you need to balance your food intake with exercise: it’s 80% food and 20% excercise. They stress that you need 8 full hours of sleep to be well rested to get the most out of your day. To stick to morning routines with yoga, medidation… all that jaz. They then post really delicous looking recipes that are “so easy to make”. And to encourage you to do all this, and to get to your own goals they post one picture after another that is a variation on the one below:

Well, imagine seeing this everyday whilst having a body that you will literally make you sick when you exercise to much. As someone who suffers from Chronique Fatigue Syndrome I literally risk getting into a crash when my heart rate is elevated for a prolonged amount of time, which makes exercising extremely tricky. And when I say a crash I don’t just mean I get tired. It can cause a range of symptoms, including physical pain (joint pain, full body pain and throat ache <– or a combination of all three), less control over my emotions (mood swings are a bitch), nausea and dizziness, other flu-like symtoms… Yeah it’s a real doozy.

Moreover, one of the issues with Chronique Fatigue Syndrome is that even if I sleep I do not rest. So even if I sleep 8 hours a night, I still wake up tired. This makes sticking to a mourning routine quite hard, even though I do force myself to do this for as much as I can. It’s a bit hit and miss, but I just take every day I do get up at 6 as a win.

Which brings me to the great weight-loss recipes… Yeah they are great. Just not if you aren’t allowed to eat half of the ingredients that they have in them (because of intollerences… trust me, most spoonies have a bunch) and are too complicated for you to make, cause newsfalsh you are tired or in pain, or both… all the time.

And then it is topped off with the constant reminder that you need to try harder, despite the fact that you getting out of bed and doing the things you need to do is already part of you trying really hard. Literally for spoonies, recovering or not, just doing the things they do costs a lot of effort and sometimes the staple “get healthy!” motivational quotes just make you feel like you aren’t cutting it. Like the hard work you do for just “showing-up” (whatever that may mean for you) isn’t enough.

Even the recovered spoonies who are trying to help you recover trough their own experiences fall into the trap outlined above. They post pictures of themselves working out in the gym and keep chanting this mantra of pushing yourself. I realise for them they of course also want to share their achievements and you know what? More power to them! But do not pretend like showing a picture of yourself in a gym is helping your fellow spoonies get where you are, because let’s be real: it isn’t that easy. It seems that they have forgotten how hard it was to get to that point and that wesometimes you just need to give ourselves some freaking grace and acknowledge how hard we work to do the things we do.

So I have instead been following influencers that advocate for disability and spooniness. And they are great. They have taught me how to check in with my body, to be more accepting of how I feel on bad days and to not constantly feel like I have to push myself. Especially an influencer on Instagram called Kat Inokai has helped me so much in embracing my spooniness. If you are spoonie reading this, make sure to check her out.

However, these people advocating for disability and spooniness are usually people who suffer severely from chronic illness(es). They have not yet gotten to a point in their recovery where they can focus on trying to start exercising again or losing any of the weight they may have gained. They are off far worse than I am.

They cannot yet share in the struggle to keep of keeping a balanced diet where it goes well for a couple of days, but then you get to the point where you are so tired that your body just tells you to eat… a lot. And because you are so tired you don’t have the energy to cook anything. So you grab something that isn’t great for you. And you know this, but at that point you just don’t have the energy to fight the cravings, or any willpower left to resist, because you needed all of that just to make it through the day.

They are unable to display the struggle of doing exercises that are low-impact and the feelings and thoughts that those trigger. Like: is this really all I can do now? Surely I can do more than this? But if I do, will I get a crash? How much exercise is safe for me to do right now? Should I do this every day, every other day? Once a week? All of this with no guidance, as frankly: no one is figured it out yet!

So again I find myself lacking representation. I find myself wondering why the “wellness” industry isn’t incorporating us in their narrative? There are so many of us, so why ignore us? Are we scary, because you don’t know how the advise you give us may affect us? Well, newsflash the advise you are just producing on “default” now sure ain’t doing much for us either.

And where are we ourselves? Where are the spoonies that are still in the midst of recovery? The, as I have begun to refer to myself, “high-functioning spoonies”? Are they just as lost as I am? Are they not showing themselves/ not advocating for our experience of spoonieness, because our lives are kind of boring? Do we feel like our lives aren’t interesting enough to be put on social media, because it is a repetition of the same thing over and over again, as we don’t have the energy to add anything new into the rotation? Is it because we are so desperately trying to hang on to be able to do the things we can, that we don’t have much energy for anything else, including advocating for ourselves?

I have reached a point where I am seriously considering becoming this advocate myself. Despite my life being boring and me perhaps not being the best example of a recovering spoonie. As I said, I am pretty high functioning, which may make it hard for others to relate to me. I have a fulltime job and am trying to finish a PhD: not the easiest to relate to. But then again, if there is one thing I have learned from CFS, it’s that everyone’s experience of it is different. Everyone is affected differently by it. So why would my experience of it be less valid? And maybe there are people who will find confort in me fighting to maintain my “boring” life, because they are doing the exact same? Maybe it will inspire others to share their story as well.

What do you think dear reader? Should I step up?