The Sleepless Spoonie

If youre struggling with believing youre “not really disabled enough” or “not sick enough” to use your mobility aids, or take those new meds, or use the handicap bathroom or parking spot, i promise you, you are. Dont feel shame for being disabled and using what we have to live.

If youre struggling with worrying about “who will ever love me when i have all these issues” and “i feel like my disability makes me unlovable” i promise you it doesnt and those who reject your disability do not define love and do not define you and what its like to love you, i promise you will be okay, you will find the one, you will be happy even if that one ends up being yourself. You deserve to be loved with your disability, you deserve to feel like a person and not a burden. Your disability is not a burden and neither are you.

If youre struggling with your body image because the world has told us disabled bodies arent beautiful, or will never be ideal or lovable, please take the time to look at yourself, your body is beautiful and disability does not change that. And the world doesnt get a say on your beauty or disability, disability is not ugly, it is human, and you are so beautifully human.

If youre struggling with being invisibly ill and worried you “dont look disabled” remember that the only way to look disabled is to be disabled and you are disabled

If youre struggling with the fesr that you might be making all of this up or youre doing it for attention or youre lying, please remind yourself of all the pain you went through and that these words are not true, they are just something that is said often because the world believes disability doesnt exist. But it does, you are sick, you are telling the truth, youre not doing this for attention or to lie, you are disabled and that is okay. This will be okay.

1. Drink water. It’ll make you feel better and cool you down. Chronically ill? More like chronically chill. (Sorry)

2. Read a book or listen to an audiobook. Audiobooks are great because you won’t strain your eyes and you can curl in a ball and wait for your symptoms to pass!

3. Write about how you’re feeling. It can help you express things that you’ve kept bottled up. Make it poetic, make it sarcastic, make it as bitter as the diary of an angsty teenage rebel. Knock yourself out (wait don’t fainting for fun is bad)

4. Listen to your favorite music. It doesn’t have to be “uplifting” to make you feel better. If you want to listen to sad music, do it! Whatever will distract you from the pain/overheating/nausea keeping you up at this hour.

5. Learn something new. I love learning languages and would recommend them at night because A) nobody can judge your pronunciation because they’re all asleep right now B) You will be semi-productive and C) You can mutter things in a language nobody will understand. Nothing makes you seem more educated than complaining about your chronic pain in Japanese/Icelandic/Spanish. (Wow look at them they have time to learn a language they’re the coolest)

1. Drink water. It’ll make you feel better and cool you down. Chronically ill? More like chronically chill. (Sorry)

2. Read a book or listen to an audiobook. Audiobooks are great because you won’t strain your eyes and you can curl in a ball and wait for your symptoms to pass!

3. Write about how you’re feeling. It can help you express things that you’ve kept bottled up. Make it poetic, make it sarcastic, make it as bitter as the diary of an angsty teenage rebel. Knock yourself out (wait don’t fainting for fun is bad)

4. Listen to your favorite music. It doesn’t have to be “uplifting” to make you feel better. If you want to listen to sad music, do it! Whatever will distract you from the pain/overheating/nausea keeping you up at this hour.

5. Learn something new. I love learning languages and would recommend them at night because A) nobody can judge your pronunciation because they’re all asleep right now B) You will be semi-productive and C) You can mutter things in a language nobody will understand. Nothing makes you seem more educated than complaining about your chronic pain in Japanese/Icelandic/Spanish. (Wow look at them they have time to learn a language they’re the coolest)

There are never ending questions you ask yourself while dating with a chronic illness. I’ve found myself googling “When do I tell the person i’m dating i’m sick?”, asking myself questions such as “when do I disclose these things?”, “Will they cope?”, “What if I get hurt?”. Love is hard, regardless of whether you are healthy or not. But here are some of the types of people through dating while being sick: 

The people who pity you.  The one who looks at you with pity in their eyes when they see you at your lowest moment. There is nothing I want more than to be an equal in my relationships. Being constantly babied and treated like a lesser human being is not a turn on.Trying to not define yourself by your illnesses is not helped by someone who only sees sickness when they look at you. 

The experts. The one who says things like “My Aunt cut out gluten, sugar and carbs from her diet and she’s totally fine now” or “I’ve heard about this super rare condition that I think you have” They are convinced that maybe it’s just your low iron no matter how much you tell them your iron levels are actually the best they’ve been in years. They will try to teach you things that you already know about the illnesses that you’ve lived with for years. Don’t get me wrong, it is so lovely when someone takes a genuine interest and takes the time to look into what you have to understand it more. But don’t act like you know my body better than I do. 

The people who just can’t handle it. These are the most common people I’ve come across. Some people realise they can’t handle it when you first tell them what you have to deal with, some take weeks/months to realise. The people who run a mile the second you say you feel like you’re about to vomit or think of you as a burden because of your illnesses. I wish that no one came across these people, as they leave you feeling like you will never find happiness. These people are shit. 

The people who ignore it:  These are the ones who avoid all conversation around your illnesses. Rarely ask you how you’re feeling, never ask how doctors appointments went and generally freeze when speaking about anything health related. 

The people who just get it right: Now these are the rarest of the lot. Finding someone that realises that your illnesses are just part of you and love them all the same is extremely lucky. These people know what to say, they never say “Hope you feel better soon!” or “Are you better yet?”. They will sit on the bathroom floor with you or hold you hand as your cry your eyes out. They will be there for the good days, where you have the energy to go out and explore and for the dark days when all you can do is lay in a hospital bed. These are the ones who make you feel good enough, make you feel like you are worth more. 

I just broke up with my allergist, and the reception lady seemed really surprised. But I have the same rules for doctors as I do for dates which is that I need:

1. To feel respected 2. To feel like they are listening 3. For them to be polite

That’s my minimum of what I need in any sort of relationship, and this doctor was 0 for 3, so I dumped her.

•They have an eye deformation they do not wish to show

•They have snow vision and literally cannot see in bright light conditions

•They are blind or partially blind

•They get migraines and could throw up or pass out from the fluorescent lights

These come from personal experience. They are things people say to chronically ill people that are either an attempt to make them feel better, solve their problem, or just to be rude. Feel free to add your own:

“Your life is an inspiration to me!”

“I couldn’t live a day as you”

“Yeah, I feel tired too sometimes”

“I know you’re in pain, but you need to tough it out”

“Things could be worse”

“You don’t look sick”

“You need to be more active/go to the gym”

“You’re just out of shape. Exercise will help”

“Stop using your illness as an excuse”

“You’re dwelling too much on the pain”

“You just have anxiety”

“Get outside”