Spoonie Terms 101

Becoming  a member of a spoonie, or chronic illness community , can be overwhelming with all the jargon and lingo. So I’ve created a document to help you navigate your way through it. There are helpful links, etc. This was originally written for the Spoonies Without Judgment  Facebook group, and feel free to join if you’re looking for a place to call home. I help admin there and we don’t bite. Well, not too hard. Hee.


Ableism: Stella Young said it best in her TedTalk. Basically, if it’s not something you would say to someone who is currently able bodied, don’t say it to someone with a disability. This blog post of mine sums up the problems with ableism and why it’s currently a problem. Not to toot my own horn, but I think it’s pretty stinking good!

Ablesplain: I’m just going to pull out a quote from this link because it says it far better than I could:

“In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.”

Aspie/Autie: Slang for an autistic person. Some people like these terms, some people don’t. Choose to use them if you want, choose not to use them if you want.

Brain fog: “Brain fog”, also know as “fibro fog”, “pain fog” or “med fog” is the feeling when pain or meds make it hard to think. It kind of feels like you’re swimming through pea soup or mashed potatoes. You forget things easy, mix up terms, say the wrong thing, etc.

Bump: Boosting a post up if it has no replies or not a definitive answer. This helps it to come back up.

CW/TW: Content warning or trigger warning. A trigger warning is something that could case acute distress such as types of abuse. A content warning is something that may trigger a phobia and is considered more of a “heads up” than an actual trigger.

Crip: Slang from cripple. Many have decided to reclaim it as their own word and to use it for themselves. The choice is yours to use it or not. Do not use it as an insult – such as “you’re such a crip!” in a cruel way. However, it is often used in a tongue-in-cheek way such as “crip perks”, etc.

Flare: A flare is an acute acting up of your chronic illness. So, if you see someone saying “I am having a fibro flare” today, it means their fibro is currently acting up.

Gimp: See “crip”. Just another word for the same thing.

Image description: An image description is telling someone what’s going on in the picture. This is used for low vision/blind people, screen readers, low bandwidth, etc. If you aren’t sure how to write one, read this. It’s also perfectly okay to ask for help!

Muggle: Muggle is just a term we use for non-spoonies. It’s usually used in a tongue-in-cheek way or in jest.

muggle sick: “normal people sick”. So, if you have a cold, you’re “muggle sick”.

Signal boost: A signal boost is posting something in a group or on your timeline that needs attention. For example, a couple years ago there was a recall of epi-pens (something used for people who have severe allergies). People would post them with the words “signal boost”, meaning it’s important and something should read and share, even if it doesn’t affect them directly. This is mostly done for allergy warnings, med or food recalls, or things that could threaten a life.

Spoon debt: Reaching into your spare “spoons”, or energy, to do something but it means you won’t have said energy or spoons tomorrow. It can be near impossible to catch back up.

Spoonie: Taken from the spoon theory A spoonie is merely someone who suffers from chronic illness.
Painsomina: Pain + insomnia. AKA a living hell. You can’t sleep because of pain, even though you’re SO freaking tired.


Something I have been told my entire life is “the only disability in life is a bad attitude”. Not in those exact words, though. “Smile! Your face will break!” “You’ve got to keep smiling.” “Keep your chin up!” “Don’t let it get you down!” “It’s just a bump in the road.” “It’s not that big a deal.” “Other people are more disabled than you.”  “She would want you to smile.” “She wouldn’t want you to be sad.”

You know what? Sometimes attitude doesn’t do a thing. I can have the best goddamn attitude I want, but Beth isn’t coming back from the dead. I dearly loved Beth and Beth dearly loved me. I am grieving. To tell someone who is grieving how they should feel, and even further – to use their departed loved one as a tool how to feel, is unintentionally cruel. We know they would want to see us happy. We know they loved us. We know all that. But knowing doesn’t take away the hurt.

Contrary to popular belief, I’m actually a happy-go-lucky, bubbly person despite being shy, autistic, struggling with anxiety, and having depression. I crack jokes at the worst times and I’m the person you will find cracking up for no reason at a funeral. I laugh to cope – I laugh instead of cry which has created some really awkward moments in my life. But I’m also cynical, sarcastic, and scared. But when you tell me my disability is my attitude, you’re implying that my attitude is the problem when you know nothing of my attitude.

You see, when you say “the only disability is a bad attitude”, you are essentially saying if I tried hard enough, I wouldn’t be disabled. That’s not true. I can try as hard as I want, but I will still have metal in my back. I can try as hard as I want and be as perky as ever, but it doesn’t change the fact my immune system is at war. I can happily bonk you on the head when I have a deliberating migraine, if you insist I keep up a good attitude though… but I don’t quite think that’s what you’re going for.

Shocking, each one of us disabled people has our own personality. I know, novel concept eh? But we’re all unique. We all use our attitudes in different ways. And if someone choose to be bitter toward having a disability – that’s okay. If someone chooses to be angry, that’s okay. It doesn’t make them better or worse than anyone else with a disability. It doesn’t mean they’re a “bad crip” or anything.

It seems that just because we have disabilities, we’re expected to be perky and happy for YOUR benefit. Because YOU don’t want to see us suffer. Because our loved ones who have gone before us wouldn’t want to see us suffer. You know what? Life fucking sucks at times. Life fucking isn’t fair. People die too young, people get illnesses ‘too young’, people are born with disability. Life happens.

I will choose to live with my disability with the attitude I see fit. Today, I may be advocate Nora. Tomorrow, I may be educating Nora. Next week, I may be bitter and cynical Nora and in a month, I may be bubbly and cheerful Nora. Just like an able-bodied person, I have feelings and emotions too. Just because parents of disabled children seem to think we should be happy and their children should be joyful, doesn’t mean we have.

Disability isn’t merely overcoming what our disability throws at us.


Why I Am Not Your Inspiration

Left and right, I see disabled people like me being called an inspiration. I see us put on a pedestal, for simply going about our day to day lives. I see us treated like we’re doing something amazing, for merely living! Gasp! How dare we actually, you know, do normal things!

I don’t want to be an inspiration.

Let me rephrase that.

If you’re inspired by me, be inspired because I’m compassionate, loyal, funny as hell, and an advocate.

Don’t be inspired because I’m disabled.

I am more than my disability. 

Behind the crutches, behind the walker, is a person just like you. I do the same things you do. So why am I an inspiration because of it?

There is nothing inspiring about living with a disability. To think as such as demeaning and belittling to us. To act as such is to treat us like we are less worthy, simply because we’re disabled.

We don’t exist to inspire you.

We exist to live our lives. We deserve dignity and respect.

Not bullshit, wishy-washy inspiration.

The Delicate Balance

Something many people don’t realize about chronic illness and/or disability is that it’s a full time job in and of itself. There is so much EFFORT you have to put into it and it’s about things you really would never think of until you’ve lived it. It’s a delicate balance – a terrifying walk across a tightrope trying to get everything to be just so.

For example, doctor’s appointments. Don’t dress too nicely, or you’re not that sick. Don’t dress too grubbily, or you’re merely depressed. Find the balance between comfortable and too nice, which is hard. Don’t put too much effort into it, but don’t be completely lazy. Don’t be too honest and open about your symptoms, or you’re drug and attention seeking. And don’t try to brush it off, or it isn’t that big a deal.

Choose what you’re doing today. Going to send out some emails? Make some phone calls? Do some paperwork? Clean the apartment? Visit friends? Cook supper? Chances are, you can’t do it all. You have to decide what needs to be done, and what can wait. And even if it all needs to be done, it often just isn’t possible.

Use your mobility aid and get stares, comments, and judgement. Don’t use your mobility aid and get stares, comments, and judgement. Take your medicine in public and hear the whispers and comments about the druggie. Don’t take your medicine in public and get hella sick.

Go to the ER and get treated like shit. Don’t go to the ER and get sicker and sicker, but you just can’t deal with the judgement. It isn’t so cut and dry when you’re chronically ill. It isn’t so simple when your life is doctors and illness.

You sit around playing video games, watching movies, and reading. You’re lazy. You’re not really sick. You go out and spend time with people. WOW NORA, STOP PUSHING YOURSELF. YOU REALLY NEED TO TAKE CARE OF YOURSELF.

You feel bad for not Doing The Thing with your friends. You feel bad for Doing The Thing because you feel like a party pooper and an inconvenience. Do I tell them about my allergies and places I cannot eat, and look like a pain in the ass, or do I keep quiet and just eat when I get home?  Do I take care of my mental health or my physical health, which sometimes overlaps and sometimes doesn’t?

Do I take the meds that make me feel better, even though I live with horrid side effects, or do I forgo the meds because the side effects are unbearable?

And the other aspect of the job is juggling all the things. Doctors. Therapists. PCAs. Homemakers. Nurses. Some come to your apartment, some don’t. You get judged because “someone with THAT many appointments shouldn’t have this much time to spend online”. (Clearly, you haven’t been in a doctor’s waiting room. You NEED something to do). You get judged if you pull back because people get worried.

Do I try to knock out the appointments at once, or break them up? Do I get up early to get in sooner and then be out of commission for days, or do I wait months for an appointment? Do I try to balance a job with all this, or am I forced to live a life under the federal poverty line? Do I try to go to school and get an education? But that opens a whole new can of worms with disability accommodations.

How do I find the balance? What if something happens and throws it off? Then what do I do?


I’m tired of talking about ableism

I’m tired of talking about ableism.

I’m tired of waking up and seeing stories in the news about people treating people with disabilities like people. I’m tired of seeing it treated like the exception and not the norm, and people deserve a motherfucking cookie for being a GOOD PERSON who is SO KIND to the disabled person when we’re just living our lives. McDonalds. Meyer’s. Everywhere you turn and it’s even worse this time of year, which seems to be “take pity on your resident crip.”

I’m tired of talking about ableism.

I’m tired of people telling me I don’t look sick. I’m tired of being told I’m too young to have these problems. I’m tired of juggling my life around a PCA, homemaker, various social workers and case managers, doctors appointments, home nurse visits, and more. I’m tired of waking up in pain and going to bed in pain. I’m tired of doctors not taking me seriously.

I’m tired of talking about ableism.

I’m tired of seeing bullshit like Kylie Jenner. I’m tired of people thinking of me as an inspiration just because I’m a gimp. I’m tired of taking medications day in and day out that I need to function. I’m tired of not being capable of using a stove on my own. I’m tired of being terrified that before age 30, I will be in assisted living.

I’m tired of talking about ableism.

I’m tired of the looks. The stares. The comments, both to my faec and behind my back. I’m tired of being doubted. I’m tired of being treated as a child. I’m tired of being forced to be neurotypical – maintain eye contact when I say. Don’t do your stim. Don’t think about that thing. Don’t do that thing, don’t do these thing, we don’t like it. You’re weird. You’re not good enough. You’re too good to be disabled. You pass as normal too well. You’re so embarrassing to be seen around.

I’m tired of talking about ableism.

I’m tired of being held up on a pedestal, as some poster child for my disabilities. Of being told I’m brave for merely living my life. Of people telling me they’d kill themselves if they had my disorders. Of people telling me I should kill myself, because my life isn’t worth living. Of being judged for doing what I do. Of never being a good enough crip.

I’m tired of talking about ableism.

I’m just tired in general. I sleep too much. I don’t sleep enough. I graze all day instead of eating regularly. I don’t eat at all. I don’t eat enough. I drink too much and get bloated. I don’t drink enough and wind up in the ER. I am juggled from specialist and specialist just trying to figure out what the fresh fuck is wrong with me.

But yet…

I can’t stop talking about ableism.

Not while we wake up to some so-called inspirational story about a person with disabilities. Not while we live in a world where people think it is okay to say things to a disabled friend that they would never utter to an able bodied friend. Not while stories catch on like wildfire around social media, not even thinking about the feelings of the DISABLED person. Oh no, we are focused on how KIND and GREAT the OTHER person was.

I can’t stop talking about ableism.

Not when we live in a world where people out people without their consent about their disabilities, and then expect back pats for being so kind to the disabled person. Not when we live in a world where it’s considered AMAZING to be nice to a disabled person, when it just should be human dignity. Not when it’s considered “cute” to have OCD quirks, autistic quirks, all these little quirks when they’re NOT quirks, dammit, they’re who I am and I can’t control it and to brush them off as quirks demeans me.

I can’t stop talking about ableism.

Not when people talk around me or about me, but not to me. Not when even disability conferences and college disability services cannot get their shit straight. Not when it’s considered amazing and inspirational I got so close to graduation but had to withdraw for medical reasons. Yes, I’ve made the most of shitty situations but we ALL do.

I am so fucking tired of talking about ableism, but unless I want things to get better and to finally get a rest from talking about it, I can’t stop talking about ableism.

My Illness Won’t Get The Best Of Me – Or Will It?

image is of a young looking white female presenting person. she is wearing a navy tank top, and a sparkly navy, medium blue, teal, and purple tutu. she is also wearing purple and green butterfly wings, and has on a pink and purple floral crown. i have no idea how you would describe my position - I leapt back because i forgot to hit the self timer so i was caught in action. almost flailing.

image is of a young looking white female presenting person. she is wearing a navy tank top, and a sparkly navy, medium blue, teal, and purple tutu. she is also wearing purple and green butterfly wings, and has on a pink and purple floral crown. i have no idea how you would describe my position – I leapt back because i forgot to hit the self timer so i was caught in action. almost flailing.

My illness will not get the best of me. Some days, it will beat me down. Some days, it will make it impossible to move. Some days, it will make me so sick I have to choose washing the dishes or taking a shower. As I fight along side whatever is making me chronically ill, it’s not going to get the best of me.

To say “the only disability in life is a bad idea” is absolute bullshit. Smiling at the lines of bottles of medications won’t make me need them anymore. Watching all the comedies I want and laughing until I cry won’t make me not be in pain anymore. And so, to say it won’t get the best of me is also kind of bullshit is a similar, although different, vein.

I often see people say “I’m not disabled, I’m differently-abled.” That’s a very problematic term, which you can read about here. I also choose to use identity first vs person first language, which you can read more about here. But here’s the thing: I am disabled. It’s as much of a pair of who I am as my hair being brunette or my skin being white. And to me, by saying things like this you are brushing off the struggles that disabled people face. The micro and macro aggressions we walk (or roll, or hobble) into every single day. It’s complicated and layered, but it has a lot to do with the whole sentiment of “just cheer up, buttercup, and your disability will go away”.

The thing is, my illness does get the best of me some days. Many days. Most days.  But it doesn’t mean that I cannot make the best out of what I’ve been given. I can still dress up in halloween costumes, like pictured. Too bad I’m not a pain med therapy. 😉

There are days when my illness sends me to the emergency room or gets me admitted to the hospital. There are days when my doctors throw their hands in the air and tell me, to my face, they don’t know what’s wrong with me. Why I’m losing weight. Why I’m puking. Why even heavy duty nausea meds don’t always cover it. Why I am so much pain day in and day out. As one of my doctors said recently “It’s 3 steps forward, and 2.5 back.”

Yes, my illness does get the best of me. It gets the worst of me, as well. It gets all parts of me. To say I won’t let it beat me is silly, because I’m not really beating myself. I am happy with who I am. I have accepted that being a disabled person (see? identity first) is a big part of who I am and what my life is like and you know what? That’s perfectly okay.

Mystery Illness 2015

So, on my private Facebook, I’ve been mentioning how I’m battling Mystery Illness 2015. Well, it’s been nearly a month and there’s still no signs of improvement.


Mystery Rash on the back of my neck, not improved with steroid cram.
Off and on cough.
Absurd amount of sleeping.

Yep, this is mystery illness 2015. Mono test? Negative. Strep? Negative. WBC high but we don’t know why.

Add into it, right now, my stomach is actin up. It was fine earlier but now, it’s not. And I can’t get into that doctor until December 8. Ugh.

And that’s your mystery illness 2015 update.

Ten Things Not To Say To Someone with a Disability

I can think of a lot more than ten, but, you know, we have to start somewhere. I could go on and on for ages about what not to say. Part of being a good, decent person is knowing when it’s okay to comment and when you need to keep your mouth shut. But never fear, Nora’s here to help you out! Aren’t you glad to have a handy dandy Nora to help you not be a total butthippo? 🙂

Image is of me back in 2010, pretending to fly. Let's pretend I'm a superhero, k?

Image is of me back in 2010, pretending to fly. Let’s pretend I’m a superhero, k?

So. Here we go! Drumroll, please.

  1. “Wow! I wish I could lose weight that easy.”
    • You know what? I wish I could keep weight on.
    • Do you know the cost it comes at? It comes at deciding what to eat at what will taste the best coming back up. It’s at the cost of running to the bathroom, because my bowel system is once again staging a mutiny.
    • You want the drug regimen that comes with it?
  2. “But you don’t look sick!”
    • “But you don’t look like an asshole!”
    • Seriously, if I looked as bad as I felt some most days, I’d scare small children.
    • Not looking sick is part of the problem. Doctors don’t take you seriously until you drop below a certain weight, you look a certain way, or you act in a certain way. And even then, it’s a frick-fracking crapshoot.
      Image is of me at Target, taking a selfie in the mirror. I am using yellow forearm crutches. I am wearing a teal dress with a grey sweater, and a rainbow chunky necklace. Not looking sick despite, well, being sick.

      Image is of me at Target, taking a selfie in the mirror. I am using yellow forearm crutches. I am wearing a teal dress with a grey sweater, and a rainbow chunky necklace. Not looking sick despite, well, being sick.


  3. “Wow! I wish I could sleep all day, too!”
    • You know what? I feel like I’m sleeping my life away.
    • Do you know how soul draining it is to have days where you walk to the bathroom to pee, then have to take a nap on the bathroom floor because you’re too bloody tired to walk back to your bedroom? Yeah, that happened.
    • It comes in extremes. I either sleep or I don’t.
  4. “You’re so lucky not to work!”
    • I would give ANYTHING to have a job. I have hopes and dreams too, you know. And they were crushed with my diagnosis list.
    • I am literally thousands of dollars in debt for a degree I’ll never, ever get.
    • It’s devastating to realize that your life really has no life outside of your apartment and doctor’s appointments. It’s horrifying to look through your medical documents and realize that you’ve been unemployable for almost your entire life, and it doesn’t look like that’ll ever change. And there’s nothing I can do to change that.
  5. “I could never give up gluten/whatever food you’re allergic to/caffeine/insert thing of your choice here.”
    • Well, what if it was your only option? What if every time you ate *thing*, you threw up? Yeah, you’d give it up pretty quickly too
    • Don’t you think I hate it, too?
    • Welp, it’s better giving it up than dying.
  6. “But all those meds you take. BIG PHARMA WANTS YOUR SOOOUL!” (I am totally imagining this in the voice from the Princess Bride. THE DREAD PIRATE ROBERTS IS HERE FOR YOUR SOOOOULS. Only, BIG PHARMA IS HERE FOR YOUR SOULS.” I’d meme it, but I’m too sick. 😛
    • Um, well, see previous point.
    • Big pharma kinda keeps me alive. I like living. And I should hope you like me living too.
    • Again, do you think I like it? It’s a part of my life.
  7. “You have *insert disorder here?* Wow. I’m sorry.”
    • I’m not sorry. Why should I be? It would be being sorry for who I am.
    • I’ve grieved it. I’ve had my time. And by saying you’re sorry (or worse, that you would kill yourself if you had my disorders) you are saying my life isn’t worth living. You  are saying my life isn’t valuable. And that’s the furthest thing from the truth.
    • Again, my life isn’t hopeless. I don’t exist merely for you to pity me.
  8. “What happened?”
    • Life. Life is what happened.
    • You aren’t entitled to my medical history just because you see me with a mobility aid, or having an off day.
    • It’s kind of like asking a women about her pregnancy. Just, don’t do it. It’s rude and disrespectful.
  9. “You’re so lucky to be able to play video games/watch TV/be online all day!”
    • You’re so lucky I don’t crutch whack you.
    • Some days, I am too sick to even do those things
    • Yeah, well, I wish I was able to go out and have more of a social life vs those things being my interaction. For someone with chronic illness, my phone is my best friend and sometimes the only social interaction I get.
  10. “Why are you using the mobile cart at Target?”
    • Um, because I can?
    • Pretty sure you wouldn’t rather me pass out on the floor, right?
    • Again, you aren’t entitled to an opinion or an answer about my body. I need it. The end.

So, again, there are a lot of things that could be said about and to people with disabilities. I just covered ten of then. What are some of the things people have said to you that you’d like to speak against?

I focus on the pain, the only thing that’s real

Image description: a cute little bee wearing a green hat, with the text "Your Illness does not make you a burden."  from the EMM, not Emma facebook page

Image description: a cute little bee wearing a green hat, with the text “Your Illness does not make you a burden.”

The one thing I wish I had know about chronic illness is how utterly hopeless it gets. I have never been a healthy person. I was born with a collapsed lung, so from day one, I was destined to a life of pain and disability. No one’s life comes with a manual or a handbook, but the one thing I wish I had known before watching things gradually getting worse was how hopeless things got. The one thing I wish I knew as I grew into, not grew out of, my disabilities is how incredibly bleak things get. There’s nothing in the world that can prepare you for this life. There’s nothing in the world that can get you ready for how dark things are. No one told me how horrible the depression was that went with chronic illness. No one told me how incredibly HARD it would be.

No one told me there would be days that I would want to die – not because I wanted to commit suicide, not because I had depression, but because it was the only end to the pain I could see. No one told me that there would be days where all my time would be spent crying, making phone calls, and sending emails – trying so desperately to get insurance to cover what I so horribly need. No one told me.

No one told me that I’d struggle with my faith. No one told me that I would see no hope. No light. No love. That I would feel so empty, so hopeless. There’s no words for the overwhelming emptiness and despair when you live in so much pain. When you throw every med at it, and you’re still not better. When a hope is dangled in front of you, like a carrot in front of a horse, but insurance cruelly yanks it away from you.

Image description: A puppy, with the text "You don't have to apologize for your illness. It's not your fault and you haven't done anything wrong."

Image description: A puppy, with the text “You don’t have to apologize for your illness. It’s not your fault and you haven’t done anything wrong.”

No one tells you that you feel at fault. That you feel you did something wrong to deserve this life. That you are a failure for dropping out of college due to medical reasons. No one tells you that some days, you wonder if you had made certain choices or done things differently, you won’t be this way.

No one tells you at first, it seems nice to sleep so much. But what people don’t realize is that it’s one extreme or the other. You sleep all the time, or you don’t sleep at all. They don’t realize that some days, you pee or shower. Literally. They don’t realize that sometimes, you get up the energy to walk to the bathroom, but then have to take a nap on the bathroom floor before you can shower. They don’t tell you that somedays, you walk back to your bedroom but you’re literally too tried to crawl back to bed, so you take a nap on the floor.

They don’t tell you that at first, it seems nice to have all the free time in the world. But you really don’t. Because some days, you’re too sick to move. Too sick to play a video game, too sick to watch a movie, too sick to even pick up your phone. Too sick to do the dishes, so you just throw them away rather then do them because you cannot cope or function.

They don’t tell you how you some days have to decide what food will taste the best coming back up. When you’re so hungry you’re crying, but so sick you can’t eat. There’s nothing that can prepare you for that. There’s nothing that can make you realize this is now your life. They don’t tell you some times you LITERALLY have to choose between one disease and the other to treat, because they don’t play nice together and the meds interact and could literally kill you before the disease does.

Above it all, no one tells you how lonely it is. How isolating. How it feels that no one understands. How it feels to be in so much pain that it hurts to even cry. To think. To be trapped inside your head, your body, your house. And that there is no cure.

But above it all, no one tells you that no cure does not mean there is no hope. No one tells you that because of this pain and suffering, you appreciate things that you never thought you would. Like actually putting on pants. Like actually sitting up. Like being able to sit outside barefoot, and feel the grass between your toes. They don’t tell you that you learn to live and adapt in ways you never thought possible. And that is a beautiful thing.

Note: The pictures came from the EMM, not Emma facebook page. Please click the photos to see her work! 🙂