What’s a Spoonie? I hear you ask.
A spoonie is someone living with a chronic illness and that can be physical or mental. It isn’t mutually exclusive to one or the other. It’s a term that was coined by Christine Miserandino’s and her Spoon Theory story.
I’ve been really struggling with my Fibromyalgia lately and felt pretty under the weather. I don’t know if it’s the heat or if there’s something else going on, but all I seem to manage is to finish my shifts at work and then I have to go to sleep. There is little in between. It takes every fibre of my being to get a simple task done. Cleaning up the kitchen or running the hoover round the house takes mammoth mental preparation and will-power, and then decimates me for the rest of the day. It hasn’t been fun that’s for sure.
The trigger for this post was this – my brother is often tired and mentioned that he needed a nap one day. He doesn’t (as far as I know) have a medical reason for this, but he is constantly on the go or doing something or having to be somewhere. And I know what it’s like to feel like you’re running on empty. So I empathized with him one weekend and my Mum said: “I don’t get you kids, you’re always bloody sleeping”.
Okay, I get this a lot, even from the other half at times. I look healthy, seem normal and it’s easy to forget I have this bloody thing that a lot of people haven’t heard of or even think is real. The best way I have ever found to try and explain it to someone is ‘The Spoon Theory‘ by Christine Miserandino. It perfectly sums up the struggle, regardless of severity or condition, and I highly recommend you read. Especially if you know someone with chronic pain, fatigue, autoimmune issues or something of a similar nature.
Anyway, there are things that people say to me and really shouldn’t. Of course, I’m too polite to correct them, or I won’t have the energy to get into it. So I’ll put it out here because chances are it’s also applicable to many MANY others.
“You’re not sick, you’re just tired/lazy/an introvert”
Yup. Heard that before and on more than one occasion. It made the blood in my body boil. I would really like to know what qualifies you to come to that conclusion and make that statement over my GP. And I also didn’t realise you were a fly on the wall in my daily life? And yes, I am an introvert, but that doesn’t make my diagnosis/condition any less a reality. I mean, really?
I may be a few things (flakey, co-dependant at times and gullible spring to mind) but lazy is absolutely not one of them. And I swear if I hear that ever again, I cannot be held responsible for my actions that follow. Because it’s one of the few things in life that make me see red.
“You always have a headache”
Yes. Yes, I have. Thank you for pointing that out to me. Headaches are my main and possibly my most debilitating symptom. I have had one (mild to severe, to a migraine) pretty much every single day for the last 13yrs. They sap the energy from me, I have to plan around them and they ruin practically everything.
I didn’t drink for the best part of 6yrs because I was absolutely terrified of a hangover. If my headaches left me bed bound, what the hell would that do to me? So I never went out, or I made excuses. I also isolate myself from doing things that might have actually be fun. Because of the fear that if one was to spring up, I wouldn’t be able to get home or do the things I have in place to stop/treat them. I’ve missed out on a lot because of them and that’s time I won’t get back.
“If you’d exercise more or lose weight you’d feel better”
For a start, my medication is what has caused my weight gain and that won’t go away unless the drugs do. And that’s not an option. I’ve tried.
I’m yet to find an exercise regime I can stick to because most mundane things exacerbate my pain, fatigue and I can’t do it. So I give up, get sad and beat myself up about it.
I went to a yoga class with my sister for around 6 weeks once a week some time ago. I loved it, but I almost passed out every single lesson. That’s just from f*cking Yoga. Yoga!
Most days all I can muster is a 25-minute walk with the dog and I’m so proud of myself when I can do that. I do what I can manage and I really try my hardest. Despite what you may think.
“I know how you feel; I get tired and achy too”
If you’re so tired that you are on the verge of physical, mental and emotional collapse. Then yes, you may know how it feels. If you have a pain that means you can’t sit still or get comfortable in any position and makes doing anything virtual impossible – then again, yes, you may know how that feels.
But lets put it this way, you wouldn’t say to someone with one leg “oh, I sprained my ankle and couldn’t walk for a week, so I know how it feels”. Or to someone with severe Bi-Polar “I have my up and down days too”. You’re just asking for a slap.
They may be extreme examples, but the principle is the same. And I’m not trying to shoot down anyone’s own struggles or the fact they’re trying to empathise. But you don’t live that like that and even with good intentions, you are trivializing something you really don’t understand. Whereas to say “I sometimes get so tired I have to lay down something, so I can’t imagine what that’s like every day” is far more appropriate.
“You don’t look sick”
What a lovely backhanded compliment, thank you! Seriously – what does this even mean? Just because I can/will do my hair and put makeup on means I can’t possibly be unwell? Or because I have something you can’t see means I SHOULD be fine? What does sick look like… I’d love to know.
My husband was walking around with Stage 4 cancer for 2.5yrs and you’d of never known unless he told you. And yes, he got this as well. All you can think to say back is “thank you?”.
“Must be nice having an excuse to nap”
I’ve had this one a lot actually. I know a lot of the time it’s meant in jest and not to be taken too seriously. Believe me, I can take a joke. But as much as I do love my sleep, do you really think I enjoy spending 60-70% of my day unconscious? I feel like I miss out on so much, could be doing something so much better with my time than sleeping. It really gets me down and can have a knock-on effect on my mental health and mood.
Honourable mentions from the Twitterverse:
“Calm down/stop being a drama queen”
“You’re just overreacting”
“You don’t look like you have…/you look so normal…”
“Just think positive”
“You’ve got nothing to be down about”
This was much more of a rant than I expected it to be, so clearly it’s been bothering more than I originally thought. But let me share a piece of advice to you – if you ever go to say any of the above, please don’t. Take it from me that they are not helpful, they are not supportive and they will probably cost you a friend.
Until next time ♡