Chronic illness

Lies Able-bodied People Believe

If this describes you read this.


Let’s talk about the myths that abled-bodied people ignorantly believe about disabled or chronically ill/ chronic pain suffering people. To make it easier to follow I’ll make it in list form.

1. “Because we are are disabled our minds don’t work correctly therefore we can’t be smart or defend ourselves and if we can, we aren’t disabled.” Okay first, there are mentally disabled people but that also doesn’t mean that they aren’t smart or that they can’t understand when you speak to them. Second, someone can be only physically disabled. That means that when you talk about that person whether they are mentally or physically disabled they can hear you and they are human just like you. Depending on the person, if they can say something, they will do something about your ignorance. And just because we can tell you to stop being an asshole doesn’t mean that all of a sudden we can walk or suddenly we are healed from our conditions. Think my friends, think.

Me, a disabled woman, traveling.


2. “Disabled/ chronically ill people can’t travel.” Travel is possible for us. It might be harder and we need accommodations but that doesn’t mean we can’t or shouldn’t! Our lives have been restricted enough so when you have a chance to live outside of your routine, you would take it. Especially if most of your life is going to be full of pain, sleeping, pills, doctors, needles, and surgery. Disabled people deserve a vacation too.

Me volunteering at Feed My Starving Children


3. “They like being sick because they like the attention.” I’m not saying that there might be some person out there like this, but I have never met someone who hasn’t been praying and crying because they can’t take this life anymore. People have committed suicide so that the pain would finally end. I don’t care if you think they are being over dramatic, they are fighting off their own body every second of everyday. Do not insult anyone going through chronic illness or disability by telling them that they enjoy feeling like they are being ripped to pieces every day because people to glance at them. Most of the time our attention is our caregivers dressing us or cleaning us or it’s people starring at us and judging us because we are parked in a disabled spot and we don’t have a wheelchair or because we have medical equipment sticking out of us and they think starring with a sick look on their face helps us with the fact that we have no choice in the matter.

Me enjoying a concert. Yes I am still disabled


4. “You are laughing and smiling so you must be fine.” Here’s something for ableists to remember, WE ARE NEVER FINE. We show you smiles and laughs because you don’t have the capacity to handle a mere description of how we feel. We never have a pain free minute. And sometime being distracted and laughing at something else helps us not focus on the fact that we are going to live like we just got hit by a train for the rest of our lives. If we lived 24/7 showing our emotions and truly feeling them, I think we would kill ourselves. 

5. “People with disabilities don’t work as well as able-bodied workers.” I’m just going to put this quote right here… “In several studies, including those previously mentioned, it was found that 91% of the workers with disabilities scored average or better when compared with the general workforce. Their attendance is also better.”

Just saying…

This is how I’m going to look at you if you speak for me.


6. “We have to talk for the disabled and chronically ill because they are just incapable.” Can I just say that when you speak for another person, you are telling them that they are not needed there and that they are useless. They know more about their lives than you do, so shut it and let them be a social being. When people start speaking for me, I make sure that they know that everything that they just said was not correct and/ or I tell them that my nervous system is broken not my mouth. We will stand up for ourselves.

I have only mascara on. You see how sexy beautiful I am. Yes I am still disabled.


7. “Disabled people are ugly and lazy.” Okay just like everyone else, beauty is in the eye of the beholder. Not everyone who is disabled looks the same. Not everyone who is disabled IS the same. We have faces just like everyone else and being disabled doesn’t effect our sexiness. We wear the same clothes, we wear makeup just like you, and we come in all different shapes and sizes JUST LIKE YOU. We just want to be treated normally and also have our disabilities and illnesses respected. Just because I feel too physically sick to wash the dishes doesn’t mean that I’m choosing to lay down and pass out. Laziness is a choice of not doing your responsibilities, when it’s not a choice you can’t label me as lazy. You can label me as not able, aka disabled… See how that works?

You know how long it took me to get my hair and makeup done? It was hard and stressful. Not lazy. Yes definitely still disabled and chronically ill.


I know that there is so so much more I could mention and rant about. If you have some that I didn’t mention or you want to rant off of one of these rants, comment your hearts out below. I love hearing about your opinions and stories. Don’t be afraid to ask questions either! I just got really tired of ignorant people this week and wanted to make some things very clear.

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Chronic illness, poetry, Uncategorized

Things That Pop Into My Mind


I like the smell of rain 

when it hits the pavement.

I don’t enjoy puddles 

because I always forget 

to buy shoes that are meant 

for jumping in them.

I have never envied others 

for having siblings because 

I knew if I had one,

they would be the better 

one.

I could stare out a window 

for hours, just spacing out 

at the nothingness.

Daydreaming while standing or 

sitting, creating worlds that

truthfully I never want

to become reality.

In middle school I was so 

bullied, that I changed my 

handwriting five times,

all as an attempt to get them

to like something about me.

I don’t know what my natural

writing looks like, since

when I don’t think about it,

it looks like five different fonts.

There is this reoccurring 

dream I have that I watch 

myself walk down stairs.

All in slow motion, then

suddenly,

I see a knife stab me in the 

chest.

It restarts, same snail speed.

Leaving me feeling anything but 

terrified.

What I do fear is fate.

Not mine but his and hers.

He’s gullible and enrolled in

the military.

She thinks life is like a

game of “follow the leader.”

Both big hearted, 

both scared of their past 

truths.

Afraid of being alone 

with themselves.

I know that I’m not 

going to ever work like 

my mother does from 9-5.

My body is broken and

there is no fixing it

with doctors, medicine,

herbal therapy, yoga, veganism,

vampirism, or detox program.

There are times when days 

go by and I realize that I haven’t 

eaten.

So no Shelly, I’m not thinking of 

children anytime soon.

I somehow have a zit on

my ear.

That won’t stop me from

picking at it like the rest.

I’m not afraid of confrontation,

in fact when it happens,

I get a thrill from fixing problems 

or even putting people 

in their place.

I want someone to hold me 

but I’m scared that when someone 

does they will find my intimacy 

repulsive.

This is my madness.

The FAQ sheet of yours 

truly.

Ramblings of a chronically ill,

pajama party loving,

chocolate eating,

wise-beyond-her-years,

20 year old woman.

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Chronic illness

Remember the Facts


It’s difficult to remember the fact that I am not like able-bodied people. That I, in fact, cannot carry a half empty suitcase or look for high heels to match my outfits. I have to remind myself that the taller I stand, the harder I fall. That my joints hurt when I stand in gym shoes for less then 5 minutes. I have to remember that I am not healthy and that my body is described as broken.  In my childlike mind I am acceptable, society is forgiving, and there is faith in humanity. 

That’s just it isn’t it, I’m not a child anymore and I have missing pieces. I’m like an Xbox with no memory, I can play the game but I can never remember my place. My mouth is a broken record with endless power supply. I will never take no for an answer. This is what makes me a deadly combination. My insides constantly need attention and resources to survive. My mind always has a plan to take advantage of its opportunities with no thought of who it’s taking advantage of. Give my mind the task of helping my body survive and hell would break loose.

I need to remember that people are not like me. They can look good every day. They can work and get paychecks. They can stay awake without fainting. They can wake up without nausea and pain. I forget that I can’t stand without dizziness. That I’ll never be able to run again. That I have to use a wheelchair when on vacation or going on long outings. That one day the wheelchair might be permanent. I forget that I can’t take care of my own life. That I may never be able to have the job of my dreams or go through college. I forget that I am disabled. The opposite of able. 

I need to remember how much of a responsibility I am. That I have to go ten times further then every one else, work ten times harder then everyone else. All to end up at the same finish line. I also need to realize that I was given super human amounts of tolerance, determination, and strength. That I can stand for 2 hours during a concert while my back spasms, my joints scrape together, and my sciatic nerve won’t stop screaming. That just meant that I would scream louder because I knew that I would remember that night. I knew I would never regret that night no matter how long I couldn’t walk afterward because for one night I lived through a future memory that wouldn’t be about me taking my medicine or having to cancel my plans so I could throw up at home. 

It’s difficult to remember the fact that I am not like able-bodied people because I am no less than them and I’m too busy enjoying the passion of the moments to notice our differences. So I guess they don’t really matter.

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poetry

Swipe Right


I aim to be a missed call

in 2017.

You know that my phone

is glued 

to these bloody palms.

I just didn’t swipe right.

Isn’t that what we desire?

Look at me,

see what I created for you to see,

love what I can never be, in a second,

and swipe right.

I won’t get close to anyone,

so let me get inside you,

just for tonight.

Swipe right.

Our hands are chapped from 

the friction.

It takes at the least 2 years

to know the complexity of 

ones existence,

but all you need to know about me

can fit on your phone screen.

Swipe right. 

Bloody hands from rubbed

raw finger tips.

How long can we lie?

Emotions are enevitable.

The faster you run,

the slower they slit your throat.

Humanity cannot change 

how it feels by manipulation.

There is no app for deleting 

the past.

You will sense every connection.

Swiping right 

cannot protect you.

One night will last with you

Forever. So be right.

If you believe that everlasting 

hides behind the act of

a swipe,

find it in yourself.

You think you can avoid 

loneliness by

using private parts 

and manipulation,

you fool.

Lies call you now.

They know that the phone 

is in your grasp.

The trap is set and 

all a bleeding thumb needs to do is

swipe right.

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Chronic illness

Terrified and Silent 

Have you ever been terrified of something or someone that wasn’t actually there? Have you ever been in a scary situation that was actually harmless but you created it in your head? I have been terrified of fellow classmates inside elevators. I have locked myself inside of my bathroom until my mom came home because I thought someone was in the house. I have woken up from panic because I thought I could sense someone was about to rape me. PTSD they labeled me. Prescribed medication to help me sleep. You see by the time stamp on this post that the meds are working well. 

Have you ever smelt alcohol on someone’s breath and you travel through time to when you were abused? Reliving it from beginning to end without any way of stopping it. Has anyone ever accidentally touched you in some way that makes you have a panic attack? I always found it interesting that when it happened I couldn’t scream and I could barely talk. But when I’m in a flash back my voice is fine. I find it interesting that even when I wake up at night, I never scream but I know I am in panic. Even now I am obedient,”Shh, go back to bed.” With one whisper replaying in my mind, I still don’t fight. 

I don’t need to fight anymore. I need to live.

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Uncategorized

What A Broken Love We Have

I find myself in the same situation so many times. Misunderstood by my dad and his side of the family. Then I am the enemy when I try to explain and my mother is to blame, since she is the only one who raised me. 

Sophomore year was emotional. Not only was I dealing with health issues but also my fathers drug abuse. After I had enough of my life being in danger in the car one too many times, I went to my grandmother. I told her how he was struggling with addiction and driving under the influence with me in the car. How we went into on coming traffic and how I had to steer for him on 30 min or more drives. She did nothing, the only words she said to me was,”You are lucky to have a father.” The phase that my dad would use to excuse his actions. 

My father and I drive home. I was lucky enough to have my permit at the time so I could drive him home. I had had enough so I uttered,”Dad, it’s me or the pills.” He   Looked over at me while I was driving anxiously and flatly said to me,”I am not throwing away my pills.” Heartbroken I replied,”Okay.”

After I got home, I told him to not bother speaking to me until he got clean. What I didn’t expect was that it would take him a year or the blame I got from my grandmother and my aunt. Knowing everything, I was to blame. I was wrong to stay away. Even though he did clean up and now we have a relationship again. I am still a terrible daughter and granddaughter. They still don’t like my mother even though they have never put effort into taking care of me. Even though they have never taken an interest in anything I have done or have helped with my medical care. We have asked for money and they bitterly obliged. 

They love me when I sit quietly. But I have illnesses that are constantly screaming. I will not be walked over because I was raised by “lower class.” I will not take anyone seriously when they try to give me “treatments” when they don’t care enough to ask about or research the illnesses that I have. I will not take your words when it has to be said through others because you won’t tell me yourself. We pride ourselves on being family but we don’t even love each other enough to care about each other. Let’s stop pretending that our family is doing well. I am willing to fix what we can but first we need to acknowledge the truth and be honest. 

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Uncategorized

I don’t understand others who do things that they are ashamed of. I don’t understand how someone could do something and feel so ashamed when I write about the situation. They don’t want what they do posted on the internet. They want it to stay in the dark so that it is still acceptable for them to act the way they do towards themselves and others. They don’t like that their actions can be read about by people. 

If you think that it is okay to hurt me, then I don’t see why you would regret doing it. If others know about what happened, it doesn’t change anything. Maybe the fact that you know you are doing something wrong is more prominent. If so why would you act that way in the first place? Do things that you think are acceptable to do in front of the world or in front of the people you look up to.

Know this, I write the truth about how I am feeling and the truth about what has happened to me. I will not stop doing this because you don’t want people to know your actions towards me. I will write about what I think should be shared. It is not about you and the things you have done. What I write is about how I feel in the situation and how I choose to deal with the situation. It’s so that people can see that they are not alone in in life and that others deal with crazy things too.

I never share names. That is my respect towards you. But what ever you do and what ever I do, will be written with no false or exaggerated information. I do this for a reason and nothing will change my mind.

Don’t Ask Me To Not Write About You.

Aside